What I miss before ALS:

What I miss before ALS:

I miss my independence. I miss having the ability to jump in the car and go. I could just go visit someone, get something to eat, hit up the mall. Even if I didn’t want to go anywhere, which wasn't uncommon, the fact remained that I could. It was an option and in my control.

I miss talking on the phone. Now my family may try calling bullshit on this because I’ve never liked phone conversations. Only out of necessity. I usually kept my ringer off. I’m a text person, and thankfully you can get most things accomplished by text or email. This is far from the worse thing I miss, but I realize now just how often I did use the phone. Things like calling to cancel or make an appointment. They just don’t understand me. Now my husband makes calls for me. I appreciate it so much, but it makes me feel useless, helpless… searching for the right descriptive word. It can also be just plain embarrassing. I mean who has their husband calling to schedule their annual pap-smear appointment. That’s not particular to me, just a random example, trying to get to the point, the feeling of it. Some of my family does OK on the phone with me but I’m hearing, what, more and more often.

I miss having a conversation.This may seem redundant but it’s different from the phone. Usually one on one, and in a quite place is OK, I can be understood. Even then it doesn’t take long before I have to use more effort speaking, then I get short of breath and it’s harder to get my words out. I never was one that felt the need to dominate a conversation, but I do like to contribute at will. A lot of times I feel like my voice is only clear and loud enough to send a subliminal message to others. I can’t tell you how many times I’ve said something, nobody acknowledges, then someone says exactly what I just said. I want to scream, excuse me, I just fucking said that. I will say, even though hearing a lot of Whats can get frustrating, I’d rather know someone didn’t understand than to just go along as if they did. I can usually tell and it feels demeaning. I also admit I would probably do the same in their position.

There is no handbook on how to act or react when an able adult starts losing abilities. I’m not mad at the people. I’m angry as hell at ALS.

All of what I miss before ALS that I’ve mentioned does have to do with independence. That’s what ALS does. It takes everything from you. People I’ve met very recently I feel don’t get to see the real me. I want to say I am still that person, but in some ways I’m not. Something has changed a little in me. I am still in here though. I have a husband that knows me very well. This is hard on him too, I also know him vey well. There’s no hiding our feelings from each other much, we know.

I have family that is there for us and when we’re ready, they will step up more. I’ve kind of held the people I love the most at arms distance. I’m not ready to say, “I need your help.” I can still do a lot of things on my own. I’m keeping watch on Tony too because when it’s too much for him, it will be time to ask. Don’t get me wrong,  family has already stepped in for us in their individual ways. We’re so thankful to have them.

I’m sure a lot of people with ALS understand this perfectly. Others, maybe not so much if they’re the type who have no problem excepting help. I’m the stubborn person singing, I’m not ask anybody for anything if I can’t get it on my own. That is changing, and without my consent. 

I hope someone related to this blog post, or it helped in understanding what ALS is doing to a loved one. I still have a long way to go and a lot of learning to do myself.

Until next time, take care,

April

Topic Detour

There’s been a topic detour… It’s Saturday evening and I got comfortable after the long process of showering. Right before I started typing I had a severe mid/upper back cramp. Not my back injury pain. This was all ALS. First I felt like I couldn’t breath in air easily. That’s not uncommon so I put on my easy nasal mask and pushed the button to turn on my ventilator. Usually I can get control and start breathing easy with the ventilator within a few breaths, but not this time. Even though my vent numbers showed I was taking in air it didn’t feel like it, so I was gasping, and started going back and forth breathing through my mouth (which this mask doesn’t cover) and nose. This through me all off and I felt  like I was hyperventilating. tingly feeling in fingers. My back muscles were still cramped and tight making any movement hard. I couldn’t even use my strongest muscles to help stay in any position. So I just let my body slide down in the bed. Tony was sitting next to me, asking what’s wrong. But talking wasn’t easy. in  my breathy voice I got it across to him that I needed him to sit in my transfer chair and hold the weight of my head. He figured it out, stayed with me as I’m making small weird movements with my weak arms. I wouldn’t say completely uncontrollable movements but, I didn’t feel like not letting them do what they wanted was an option if that makes sense. Probably not to many people. Finally as he held the weight of my head my back started to release from it’s spastic state. So this is what my blog post turned into tonight. I’ve been having a lot of spasticity lately but this was severe. A similar back thing has happened in the night before. sometimes wrapping around to the front. This happens when I end up completely flat on my back, and especially if I’m not using my ventilator. I wake from a sleep and can’t take a breath in because the movement hurts my back that bad. I have to try and wake Tony with my hand and that’s not easy because that takes these muscles. He has become a light sleeper and has figured out a way to move me when this happens because every way hurts. The best thing has been for him to slide his hand under my back muscle then slow and easy help me sit up and get on vent. This is so scary to me. I’m afraid it’s my actual breathing muscles/diaphragm being affected. I’m just gonna stop about it now. I hate you ALS!

Tomorrow I’m going to eat with family. This will be the first time going in this house in a wheelchair. the only other house or place at all I’ve been to in a wheelchair is my Mother’s home and out to a restaurant. Both are wheelchair accessible. My Mother has a ramp because she takes care of her sister who’s in a wheelchair. Since the point of not being able to use my rollator, I just stay in the car when we leave for a house viewing. I’m nervous about tomorrow. Ther’s five or six stairs either way you go to get in this house. I thought of not going, but Mom insists. I just feel uncomfortable. There will be non-direct family there and I feel like special accommodations will be made for me. I mean like eating in a different area than I usually do. What if I need to piss? I know I’ll be surrounded by people who care about me and strangely that makes it seem all worse. I don’t want them feeling uncomfortable. Things just seem to have sped up on me. I went months getting around with my rollator, and maybe somebody walking up and down stairs with me for extra support. This is a huge change, and I’m scared.

I think dehydration played a part in what happened a bit ago. I used to drink 7 bottled waters a day. I went down to five after my activity level dropped. For over a week now I haven’t made one bottle most days. One, I’m starting to have difficulty getting it down. Seems to want to stay in throat, and I don’t want to choke. Two, it means less trips the the restroom. I’m setting my goal back to 3 bottles a day. Bottles, shit I’m regressing to an infant. No it’s not time for that now!

Look, I don’t even know if I’ve made sense, and tonight I don’t care. This post was all for me.

Until next time, I wish everyone well

April

please visit my website: The ALS Express

Journey to the car.

Hello again, I hope you’ve enjoyed your day.

I did get the bones of my site completed yesterday but I still have a lot of things to add that will stay.I’ll also be adding things that will need regular upkeep. It is certainly keeping my mind preoccupied even though it can be frustrating. I’m still learning and there’s a lot to learn. Since I’m truly bedridden at this time it’s a very good thing. As much as I want and need to move out of this house, I’m glad there has been no showings yesterday or today. I wouldn’t have made my personal deadline last night if we would have had to leave.

My husband is strong and works out 4 to 5 days a week but it’s not easy carrying me out of the room down the hall to go down 7 stairs, curve right around and go down 7 more. Then into the garage and in the low car. The last couple of times we did finally realize it’s easier to get me in the manual wheelchair at the garage door, then pull me backwards into garage. It’s actually a steep drop. I lived here 10 years and never thought of it. I just stepped right up or down. After that, getting me in the car is a challenge. It’s a tight squeeze to pull the chair up to the open car door and get me in. a couple of times I went for it and land on the car frame instead of seat. It’s just way too awkward for him to fully place me in the seat. That last thing we need is for him to hurt his back. We haven’t got the wheelchair to seat transfer down yet either. the angle of the chair gets in the way.

This is my fault and I’m ashamed to say why but I will. He could pull the car out of the garage and then get the chair angled so much easier for use of the transfer board. The reason we don’t is because I’m embarrassed for the neighbors to see me. I’m angry at myself for that. It’s not them seeing me in a wheelchair. We’ve taken walks, or as we say, walk and rolled, (silly i know) around the neighborhood in my power wheelchair. It’s the fear of me falling on the ground while trying to transfer, and Tony trying to help my non-cooperative body in the seat that gets to me. So that’s my leaving the house story.

If nothing pressing comes to mind before my next post I might share with you how I get from the bed to the shower, toilet or vanity sink. I’m sure you can’t wait for that read.

Anyway, I’m gonna do a couple other things to the site, then wrap it up for the night. Tony stopped by redbox on the way home from the gym and picked up a movie named I think, The Skew, or something like that. I’ve never heard of it. I just know it’s a horror movie and hope it’s a good watch. I’ll let ya know.

That’s it for now, take care.

Please visit my site: The ALS Express

I can’t believe it, my first blog post!

I can’t believe it, my first blog post!

I’ve been waiting for this. It’s like the building excitement of meeting someone you admire and you’re so excited, then you’re in a room with them, you’re still excited but don’t really know how to act.  Also, I underestimated the complexities of building a website.  I’ve spent the last several days beckoning my  husband to my bed (my home) through the baby monitor in his office, or my voice amplifier.  Sometimes both, which can be frustrating while on a business call. That only happened once.  I try to wait until after business hours. Even though he doesn’t have standard business hours. Somebody calling him at 8:00PM should expect more background noise in my opinion.

My third issue is I’ve been feeling sick all this week.  Dizzying ears stopped up feeling cramps and extreme fatigue.  In true April fashion I’m complaining right out of the gate, and not even about ALS.  Go figure,  I’m just writing what is circling my brain, as is, just as I said I would.  Back to my husband. He has come to me every time and I asked and  would not be typing this if not for his help.  Thank you, Tony.  You get my first shout out. I love you!  The other thing is I almost don’t, I said almost don’t feel like writing today after weeks of looking forward to it. It’s mainly because my hands hurt from typing so much.  That homepage may not seem like much, but that was work. My diagnosis process took a lot of time typing, causing my hands and arms to cramp and even my back to flare up because of position.  Not to mention it was emotionally difficult reliving it all.

So here I am on deadline day.  Thrilled but in a completely sleep deprived state of exhaustion.  My actual website is pretty much complete except I will be adding lots more information for my comrades and their caregivers. Considering this last week, it’s monumental what I’ve accomplished and trust me I don’t praise myself often.  I am proud of myself. Also, I’ve spent the last few weeks on Twitter trying to make sense in 140 characters.  That’s not easy for me.   As you can see, I type what and how I’m thinking, and in the words I would speak it. I’ve always been anal about proper grammar and spelling.  I’m going to try and loosen up about that within reason.  Of course I only spot the mistakes after sending it out anyway.

My blog is just me talking, something I miss because my voice has become so quiet and my words are slurred because of tongue atrophy. So it’s like talking again for me.  When talking I’m not thinking or saying, upper case here or semicolon there.  I’m just talking.  Of course I want to have a good reading structure that’s easy to understand, and after reading a few blog posts hopefully my personality will come through in a way that you get how and where my intonations are, where there is dry humor or when I’m being serious or a bit sarcastic.

please visit my website, The ALS Express

Benign Fasciculation Syndrome

I decided to go with a post about Benign Fasciculation Syndrome (BFS) and what I've recently learned about it. So here we go... I have a feeling that most people with ALS have dealt with someone wanting opinions or advice about their muscles twitching. I see BFS come up in searches for about anything ALS related, and I have received a couple of messages from people concerned about their muscle twitches. I’ve seen a look of fear wash over peoples’ faces after mentioning muscle twitches as a symptom of my ALS.  I tell them muscle twitches are very common and it’s extremely rare for it to result in an ALS diagnosis. Most let it go there even though I have a feeling they run home and consult Dr. Google.

I became pretty frustrated not too long ago with a lady at Abby’s behavior class. I was trying to pay attention to what the instructor was doing. This lady walked over to me to ask what my condition was, being complete strangers made that the first rude question, but I politely told her. I am waiting to meet that person who truly already knows what it is. She goes on to ask how I was diagnosed and what my symptoms were. I had her at muscle twitches. She would not let up telling me about her muscles and asking my opinion and advice. She kept trying to make her muscle twitches fit my death sentence as she had been trotting around with two dogs on a leash in the next class separated by a small fence. So she’s standing there going on about her fears of having ALS, looking like the picture of health and I’m sitting there with something obviously wrong. I finally told her I needed to pay attention to what my dog was learning. I think I said it nicely. Once home I realized I was in my transfer chair borrowed from the ALS association that has an ALS sticker on a bottom bar of the chair. I think she knew I had ALS before ever approaching me. It did me no good but, I let it ruin my mood that evening.

I’ve since tried to be careful when using the words “muscle twitches.” I’ve felt twitches for years off and on, and if I’m going to be honest as I said I would be, I would have likely gone home and looked it up with a little fear too after meeting and hearing that from someone with ALS. I can say with certainty I wouldn’t keep on questioning the dying person and expressing my fears that I may have ALS too. That is very rude and if anybody is reading this and experiencing muscle twitches please, don’t put a person diagnosed with ALS through that.

If you have concerns, only a doctor can give you the answers. If your PCP sees reason for concern they will refer you to the right specialist. If not, you know your own body and can insist on seeing a specialist and go through all of the expensive testing. It’s only worth all that if you’ll believe the doctors and the test results if you’re told you’re fine. I’m not meaning to insinuate all people want something to be wrong.  It’s when you become obsessed and don’t believe what highly trained professionals are telling you that you most likely are dealing with a form of anxiety that is causing you to experience this fear.

After doing some looking up of my own lately I have learned there are people that have normal  twitches who have let anxiety set in, but I also learned that Benign fasciculation syndrome is very real and can come with some real side effects, in some cases forcing lifestyle changes. I didn’t know this until recently, and it gave me a new perspective on people dealing with this real condition and how it can be pretty scary until it’s definitively diagnosed. The path to diagnosis is very similar to ALS. It’s made by excluding all other possible causes. If you are diagnosed with BFS, peace of mind should come with learning it’s not going to kill you but, I do see how it can be a  frustrating experience when nobody is taking you serious. The word benign gives the impression everything is fine, and syndrome doesn't help either.

While it’s great news to learn you’ll live, it’s not comforting to know you’ll likely have cramping and fatigue which doesn’t feel benign. I imagine it’s not comforting going through that and only hearing how lucky you are. The fact remains it is great news you don’t have ALS.  It’s time to stop thinking about ALS and focus on ways to deal with and reduce the effects BFS has on you. Hopefully you can tune out the people in your life who make negative comments about your condition not being serious and focus on making the best of your situation and feel the relief of it not being a terminal condition instead of staying stuck in the anger of feeling misunderstood. ALS and BSF have been connected in a negative way between the feelings on both ends. I have certainly had my moments of thinking you should just shut up already because you will continue to walk, talk, eat, breath, live. We won’t.

This post is my way of saying to BFS sufferers that I understand a little more of where you’re frustration is coming from and the fear you experience. My wish is that you discuss your concerns about it with your doctor, not someone who is dealing with the terminal illness you fear. I don't mind at all a question asked to me if it's respected when I answer but, I can’t diagnose you or calm your fears. If you can’t afford to go to a doctor, please realize that if you do have ALS with that much muscle twitching, it will be recognized, and there is help available. It can and will reveal its ugly head in several ways most commonly by clinical weakness which must not be confused with perceived weakness. 

I don’t usually use Wikipedia as a reference but I believe it is described well and correct here about the difference between true and perceived weakness.

The difference: True weakness vs. perceived weakness

• True weakness (or neuromuscular) describes a condition where the force exerted by the muscles is less than would be expected, for example muscular dystrophy.

• Perceived weakness (or non-neuromuscular) describes a condition where a person feels more effort than normal is required to exert a given amount of force but actual muscle strength is normal, for example chronic fatigue syndrome.

My example of perceived weakness: A flight of stairs you commonly take seems more difficult and is making you more tire than usual. That is perceived weakness.

My example of true weakness: You start tripping on a flight of stairs you commonly take, you think you're lifting your foot high enough to clear the next step but you don't. That is true clinical weakness.

This is a video I came across. I think it describes true BFS well. I have no opinion about the the spices or nutritional supplements he speaks of.



I hopes this clears up some miconceptions about BFS.

Until next time, take care,

April

 

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Two Days... Two Sons... Two Good-byes

Hello all. I just want to write a quick post to tell you the next two days are filled with good-byes. Tyler will be heading out in the morning, then Steven will be heading out Wednesday. Between dealing with those and a couple of other things I'm working out, I may not have time to blog, but I will if at all possible. I'm not sure about what yet, but I have some ideas floating in this head of mine. Also, thank you for the many birthday wishes I received.

There is something else I want to mention. A few people have asked about how it's going with the van modification. I didn't want to make a whole post on it, but it turns out the van just isn't going to work for us. Even though I have a relatively short chair the floor will have to be dropped 10 inches along with a couple other modifications. Tony took the van to one place and called another and they both won't do the needed modifications on a van older than 2009.

Of course Tasha wasn't considering any of this when she purchased it, and it takes nothing away from the generosity of handing  the keys over out of love. The van is still in great driving condition and will be used by her family. It's not a loss and we still thank you, Tasha and Billy, for the generosity.

That does put us back into the search, or most importantly the house selling so we can purchase one. It's easy to get impatient but we do expect to be selling soon.

This was just a quick update I wanted to share. I will have a new ALS post soon.

Until then, take care,

April

 

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My Birthday Weekend

Hello to everyone. I've spent the last few days with family. It has been exhilarating and exhausting. The exhaustion is strange because I haven't done any more physically than usual. I used to be the one running up and down the stairs and getting things prepared and nothing could stop me. Tony takes care of all that now and it makes me feel useless. That is the only negative of this weekend, just not being able to do anything but be here.

I spent my birthday, Friday with Amanda and Brayden. She made me a special cake. I call it an icing cake because it's a lot more icing than cake. I have a weak spot for icing. My Dad came, my Stepmother Gracie cooked for me earlier in the week for my birthday. Great food, cake and all. This is how I'm keeping my weight on. It's strange being told by your Doctor to keep weight on, but I have decided to get used to it. Everyone knows what I can eat easily and make sure I have plenty. When I don't have my food specially prepared, I'm on the Brayden diet. My Grandson and I eat the same things.

I really shouldn't use the word, negative, because it's been a great few days. My son, Tyler, came to town and surprised me for my birthday Friday evening. It's been great to spend time with him in person. It was a little scary at first because this is the first time he's seen me with the ventilator or in a wheelchair full time. We had a much needed in person talk. We talked about the fears and pain and shed a few tears. He has put on a strong face for me since. There is no changing the situation right now, so we've certainly not limited ourselves to talking about ALS. No way ALS is going to spoil my precious short time with him. We won't have that. Today he spent the afternoon with his sister, Amanda, and her family. He got to see his sister, Tasha, a few minutes as she stopped by with Amber on her way to work. Amber stayed and visited a while, In case you don't remember she is the Granddaughter I inherited when Tasha married Billy. She's a very sweet young lady and busy new mom to her son, Grayson.

But between Friday and tonight (Sunday) I've had a lot of visitors and a lot of love. Mom visited Saturday here instead of our usual Saturdays out. I was too exhausted. Mom and my sister, Julie, already celebrated my birthday earlier in the month. Julie and I both have April birthdays. Tyler will be here one more day. Weather allowing, we're going for a stroll around the neighborhood. It will be nice leaving these walls.

Wednesday Our son, Steven will be leaving town for ETSU School of Pharmacy. Some special hellos and non-permanent good-byes this week.

I have a couple of ideas for my next post, but remember I'm open to topic suggestions. It's best to leave them under the blog drop down menu "leave me a message" or on the private contact page.

I want to say hello to all my followers and welcome the new ones that have added to my inspiration to keep blogging. Thank you all.

Until next time, take care,

April

 

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Permobil C300 Corpus 3G Power Wheelchair

There are many factors that go into choosing the right Power wheelchair for you. I’m going to focus on how I chose mine, a Permobil C300 Corpus 3G. Soon before I actually got the ball rolling with the process of insurance approval and all the hoops you have to jump (or fall) through, I did my research. It wasn't easy; there are a lot more options than I expected. After being overwhelmed with information, I searched for the most common power wheelchairs used by pALS. I don’t remember where I read it but it was Pride and Permobil. I ended up choosing to go with Permobil. Some deciding factors in choosing  Permobil was that it has the highest seat elevation at eight inches, and most important is that Permobil has Corpus 3G seating which offers great back support that can be customized to your specific needs. That part was a no-brainer with my back issues. Also, I know a lady with a Permobil. It looked comfortable, she said she practically lived in it and loved it. She and her husband showed me and Tony how she drives up the ramp and into her van using the EZ Lock system which I was interested in. It’s much easier and less time consuming than the 4 point locking system I had read about. She just rolled up the ramp and turned into where the passenger seat would be and a docking pin mounted under the chair locks into a docking base mounted to the floor. You hear it lock in and you’re finished. Here is a link to learn about it. http://www.ezlock.net/

So now I had the brand narrowed down but it didn’t stop there. The added features seemed endless, and did I want front, mid or rear wheel drive? I wanted a chair with a tight turning radius because I knew we would be moving to a much smaller place when we sold our house. I also wanted a chair that is good for outdoors so I could go for walks with Tony and go to the dog park.

These factors helped narrow it down to their M300 or their C300. Both models have the Corpus 3G seating system.  

The M300 is a mid wheel drive with the best turning radius of only 20”. That seemed great considering the majority of the chair use would be at home, especially as I progressed, and would be navigating tight spaces.

The C300 is a front wheel drive and considered better for outdoors. That alone made me want it because I so wanted to feel secure driving outside. I had to force myself to keep thinking ahead. There was a chance outdoors wouldn’t be as important by the time the chair arrived. That’s how cruel ALS is.

Before I get into other features, I’ll tell you what brought me to the final decision between these two models. After much searching and reading it came down to two factors. First I learned there was only a slight difference in the turning radius between them. They’re both great chairs but I learned with the M300 people were dealing with the large 8” front casters coming into contact with the mid wheel unless you have the leg rests as far in as possible. I didn’t want to have to make any adjustment to move the chair in any way so finally the choice was made. The Permobil C300 Corpus 3G would be my chair.  

Now it was time to focus on the features I would need. I think the most important feature is the seat elevation. While you can still lift your arms It is great to be able to lift up and reach things you need. It’s extremely important for any caregiver. It will save their back by being able to keep good form while caring for you. They can put you at the right level for them to accommodate their height enabling them to keep good form. It also makes transfers much easier because you can raise or lower the chair height to whatever you’re transferring to, be it from a reclining position in chair transferring onto a bed, or from a sitting position onto any height toilet. If Medicare is the only insurance you have then you need to be prepared that it won’t be a covered feature. Most local dealers offer to add this feature costing between $1,500 and $2,000. Most will also offer a payment plan. I know that is a lot of money to many people especially with all the other extra expenses adding up, but If at all possible to get this, you and anyone who cares for you will be thankful. You can go to alsguardianangels.com and fill out a grant request. They may be able to fully or partially pay for it depending on available funds.  

Another great feature is the attendant control. It is mounted on the back of the chair and your caregiver can drive for you.  This is a great feature early and especially later in progression. It is an electric control mounted on the back of your chair that can be kept down and out of sight when not needed. It gives your caregiver full ability to drive for you. You’ll want this to be someone you trust and they should practice a little without you in the chair to get used to operating it.

I also highly recommend the ROHO seat cushion. I can get lost in the specifics but mine is a four chamber air filled system that is extremely comfortable and adjustable.  It greatly reduces the chances of pressure sores, I don’t want to start talking over my head so I’ll just say definitely check into it and I personally recommend it over a gel cushion. Learn about ROHO wheelchair seat cushions at- therohogroup.com/products

I also have an easy adjustable and removable tray. It’s great for tablets and laptops and also for eating. I wouldn't say it’s a must because you can roll under tables and bedside trays, and many people get creative and make their own custom tray. You can adjust the one I have to be flat or tilted. It’s a very nice feature.

The last I can think of is a simple cup holder. Something I didn't think much of originally but if you stay in your chair a lot and are still able to drink, you most likely keep a drink with you to sip on. It’s also great for keeping up with your mobile phone if you can still use one. So this very simple feature is actually pretty important.

When you get your chair it comes with a tool bag full of what you’ll need to make any adjustments like the angle of your armrest or headrest height. It’s a nice thing to have on hand.

Another nice little gesture from Permobil is when you get your chair, a postage paid mailing card will come with it, you write the chair’s serial number on it, put it in the mail and they’ll send you a $50.00 Best Buy gift card.

I’m in no way trying to sell you on the Permobil brand or the model I chose. I’m just sharing my story of how I ended up with the chair I have. I’m very happy with it. The majority of its use has been outside. I did drive it around downstairs quite a bit in the beginning to help Abby get used to walking by it inside. Running over her is a huge fear of mine. One of the instructors at her behavior class pointed out to me she is at eye level with the wheels and watches them closely. I still use the command “watch wheels” if I can’t see her or we start moving to be safe as possible.

This was my Power wheelchair experience. The last thing I want to stress is to not put it off. ALS is very sneaky and it can be a lengthy process from the first appointment to receiving the chair. It can take several months, and that’s if everything goes smoothly. I hope this is helpful to someone.

April

 

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Let’s Talk About Sex... with ALS

Where to start…  First of all this isn’t just about the act of sex.  It’s about intimacy in a relationship when something like ALS enters unwelcomed. I can see how one might think the sex aspect only applies to young or new relationships. That’s not the case.  Yes our sexual activity has changed over the years. We haven’t been doing what we did, or as often as the first several years together for a while now; however we have never let the flame go out. We’ve always had fun and made fun. We’ve been able to laugh together about our aging bodies, and still love them.

I’m not saying I wasn’t dreading getting older, but I never wanted the lights turned off before undressing. I never felt ashamed of my aging face and body with Tony and vise versa. Now I will admit to giving in to the public standard of wanting to look 22 forever.  I used prescription creams, had facials promising young glowing skin that will peel away years. I kept my body up with yoga to keep a toned attractive body. The time I most let my body go was in my 20s and even into my 30s with a little extra weight. I had much more important things to contend with than my looks, but even a little fat looks OK when you’re young. I really started getting it all together in my thirties with eating healthy and working out.

Our plan was when I turned 40 we were going to have some fun, really live and enjoy life. Our youngest turned 18 when I was still 36.Our kids would be young adults, but self sufficient for the most part. It would finally be time for us to do our thing after our lives revolved around them for so many years. It was exciting to look forward to.

Starting at about 38 we were preparing for our time ahead when I hit the big 40. I even started checking into maybe a dab of Botox here and a tad of filler there. I hadn’t fully made up my mind, but I was checking reputations of all the great deals I’d seen advertised everywhere.  I wouldn’t choose just anyone. We’ve all heard the horror stories and seen the people who can’t smile or give you any indication of how they feel because their face is frozen. I’ll take a line on my forehead over that any day. I wanted and more importantly needed my facial expressions. If I was going to do this, it had to be with someone who knew what they were doing and understood the meaning of, just a little. The only other thing I was considering if money allowed was having my breasts lifted and reduced. Actually this was almost a medical necessity, large breasts are heavy and all the years of toting them around took its toll, and the bra indentions on my top shoulders weren’t sexy or comfortable. It would be so freeing to have smaller breasts that stay up where they belong on their own.  We were thinking, talking and excited about the new adventures, the fun we were going to have. There was a bump in the road a few months before with my back injury. I was working hard to get and keep it under control and at the time I fully expected it would happen. That’s not what made our plans come to a complete halt forever.

It was a month, almost to the day before my 40^th birthday that completely ended all of our plans, all of them, not just the fun life for us. We had plans for grandchildren adventures too. Everything ended or changed March 28, 2012, the day I learned I have ALS. Here I am practically trapped in my bedroom typing this with only days before I turn 41. This was not part of the plan!

Tony never cared whether I had any injections or breast augmentation. He has always loved me and been attracted to me just as I am, and faithful too, beat that! This means so much to me now that my body has changed so drastically. What’s new is that I have changed. For the first time, I don’t like him seeing me naked. No matter how much he tells me I look just as beautiful to him. I never thought I would feel this way with him. There were times when I put on a few pounds and didn’t feel the best about my body, but I still felt sexy with him. I could still walk sexy and talk sexy.

I think I’ve said in another post, ALS changes absolutely everything. I can’t disguise or direct attention away from anything about my body now. I can’t suck anything in or talk, walk, sit or lay my body in any position that resembles sexy, and I certainly can’t talk sexy. I just feel ugly from head to toe now. Our long burning flame is just a light breath away from going out. We’ve been talking and are determined to not let that happen. It’s not easy though.

My looks and confidence aside, there are other obstacles. I have much less control over movement. I am much less of an active participant because of weakness so it is awkward for us both. It’s also not sexy to need to stop and put on a ventilator mask, even though I’m lucky to have one of the quietest vents, the sound of mechanical ventilation is a mood killer. It is for us. So it has become something we avoid.

There is another huge factor that shouldn’t be left out. Tony puts so much energy into taking care of my needs and worrying about my safety that it’s easy to stay in that mindset. It’s not easy being my caregiver then switching to my lover. He’s scared and grieving just like me. Neither one of us have sex on the mind very often.  I think I’ve given away enough personal details, I’ll just leave it with I can’t do about 80% of what I used to do, We’re both grieving and constantly preparing for the next new hit from ALS. That’s not a recipe for an evening of making love.

I have peace in knowing Tony is here because he loves me no matter what. We did go a long time not talking about this. A big mistake, difficult or easy topic, communication is a must. Talking has eased both of our minds. We have both shared our feelings about this change while being honest.  We went from avoiding the topic to thinking of ways to be intimate without fear. Remember, intimacy doesn’t mean a sex act must be involved.

I spend a little time running my fingers through his hair while he drifts off to sleep. A few minutes here and there of me leaning on him while sitting and letting him hold me securely in his arms. These things are powerful. It renews our desire to fight this fight together, it reminds us both of the bond we share that can so easily get lost in the mess that is ALS, It also reminds and allows us to express the love we share and sometimes shed heart healing tears together. There will come a day when I can no longer run my fingers through his hair. We’ll have to find another way without losing ourselves. Like everything else in a relationship, it will take effort and communication from both of us.

We’ve been through a lot together and kept our love intact. Our love will make it through ALS too. It won’t play out like a fairytale but life is not a fairytale.

Until next time, take care,

April[subscribe2]

 

 

 

 

 

 

 

ALS... A Communication Loss

Hello to all… I didn’t get a post in over the weekend because I also have a project I’ve been trying to give some attention to. I started it a few months after diagnosis. Believe it or not, I get a lot done from my bed doubling as an office, especially with Tony around to help.  Without him a lot of things wouldn't get accomplished. I will be cremated, I hope after donation of brain and spinal cord tissue for ALS research, something else I need to get squared away. There will be no funeral home for me. Instead, there will be “April’s Show.” Maybe I’ll  blog more about it sometime but I can’t give away too much. It’s all for my family and most of them read my blog. 

Right now I have something on my mind that really hit me hard soon after diagnosis. Since then I go through times of it hurting and hitting me hard, like today. I really need my hands, my fingers to work. We all do of course but my son, Tyler, is deaf. We communicate by sign language. He is currently living out of state and we communicate by text mostly. I’m well known for my long text messages, I still send him long ones but it takes me longer. When I try to think of different ways to communicate with him later in progression, it always comes back to no, that won’t work.

Right now I can’t speak my texts because nothing I say is understood. So I swype, then go back and fix the many mistakes, I used to swype with rarely a mistake but it’s getting harder. I start getting shaky from weakness caused by holding my phone in my left hand, my good side. My fingers start getting shaky on my right from swyping. I used to use only index finger, now I alternate. The same thing with typing my blog, usually by the time I’m finished, my fingers are cramped and weak. It’s something I enjoy and feel it’s actually therapeutic for me. I really want to keep this up.  So I will.

My sign language used to flow easy. More and more, my fingers just don’t move like they used to. I guess you could say I sign with a very strong slur, and just like talking the longer I sign, the worse I slur.

I’ve decided the only way we’ll really be able to communicate when together is when I start using eye gaze technology.  He’ll have to look on the screen to see what I’m saying. Then he can sign to me. It’s just been on my mind a lot lately. This fucked up disease. I hate you, ALS. It also took my facial expressions so early. Expressions mean a lot in the deaf community.  Face expression is like tone of voice. A simple expression can turn a statement into a question, or what can be taken as anger shown as joking. Expression is important in any communication just much more so when communicating with a deaf person.

It breaks my heart but not my will! It brings back memories of when I first learned he was profoundly deaf. Before the news fully hit me, all I could think of was how I would communicate with him. I went out and bought a sign language book, Signing Exact English (SEE) and got busy learning. In the early days people would tell me I should be learning American Sign Language (ASL). That made no sense to me at the time. My son would sign English. Now, my son does primarily sign ASL, but I really don’t regret it. I really stopped regretting it when he gave me his approval, and in certain ways it actually helped him. Now I’m more of a pidgin signer which kind of bridges the two, but I still lean more toward the SEE side. Just like writing, I tend to want to sign the exact words I’m saying. We understand each other, it works well for us and that’s all that’s ever really mattered.

No matter what, communicating, especially a heart to heart discussion is something you always want the ability to do with your child. We’ve always signed away to each other.  I’m so angry that I’ve lost that already. I can still form signs, but nothing like before. Definitely not what’s needed for the easy flow of a conversation.  It’s a loss for both of us. I think I’m feeling like any parent would in any situation that poses a threat. It’s one thing to fuck with me but please just leave my child alone!

Now I realize my daughter, Amanda along wish Tasha and Steven are being affected and having something taken, me, bit by bit too. This just seems like something specific directed at Tyler. I need to start checking into the best eye gaze speech systems like Dynavox or Tobii. Even though my voice is leaving me, I really haven’t done much research about which will be best for me, or even exactly how they work. I have done quite a bit of voice banking. I’m assuming they show the words you’re creating on screen. If not, there’s another, no that won’t work. I’ll never give up. I want to be able to fully communicate with my son. Someone can always sign to Tyler what I say when I’m using a speech device, but some conversations are private. We’ve never had to have an interpreter before and I always want it to stay that way. Just like so long ago, when I knew I would figure out how to communicate with my son, I will with ALS too.

I feel a little better, stronger writing these thoughts out. I hope it makes sense.

Until next time, take care,

April

 

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A Gift of Independence

Hello to all....  I was working on a different post but it will have to wait for another day. I'm too overwhelmed to think of anything else. My Stepdaughter, Tasha, came to visit this evening. She, her husband Billy and the three boys Jesse, Ethan and Uriah came in two vehicles and left in one. They gave us their van!  They decided with the older kids on their own they can manage without it now.

I believe I've mentioned in prior posts that I have my power wheelchair. It has been sitting in an empty den 14 stairs away from me. We have our house on the market and planned to buy a van when we sell. It's been very difficult for my husband to get me in and out whenever we leave. I've been concerned about him hurting his back carrying me up and down stairs. He will still have to get me up and down stairs but he won't have to get wheelchair in and out of trunk and all the transferring.

We still have to get it modified, but it is in sight. Soon I can roll out of my house and into a van, then roll out of the van inside any store.

How do you thank your child for giving you their vehicle? All of our kids are young adults. A time when, as parents you want to help them out. It's very humbling to accept something like this. Thank you Tasha and Billy. The boys were all very sweet but comical about it, letting me know they don't have a van anymore. The oldest, Jesse showed me how he closes the back door hatch. Ethan asked an innocent but good question about how I will drive the van while I'm in a wheelchair. I let him know Grandpa has me covered there. They've had the van a few years and the boys obviously like it. I feel it was a gift from them too. They know I need it, and were willing and happy for me. If not, Tasha must have really threatened or bribed them well. No, they wouldn't have made it through the visit without it coming out. We all know how honest kids are. Thank you Jesse, Ethan and little Uriah.

My whole family has been here for me and helped in any way they can from getting the house prepared to sell, like my brother-in-law and nephew professionally cleaning carpets. Our kids Steven and Amanda painting while both having a lot going on, Amanda just giving birth and giving me pedicures, Steven working and studying for PCAT. (he passed) I've received supportive text messages from Tyler who is living in another State. My Mother doing all kinds of thing that she shouln't do with her bad neck. My sister Julie has been there any time I've called out for her. She is also helping a lot in raising awareness about ALS. I received two pairs of new shoes in the mail from my cousin, Trudy, who lives out of state after she read of my feet being freed. I can keep going. For any family I've left out, please don't think I have forgotten, it's all so appreciated by both Tony and me. I've always been an, If I can't do it myself, I won't ask, type of person. Now I'm flooded with family offering to help in any way. Even my extended family Patsy and Jerry offering to cook meals to have ahead of time.

Like I said in the beginning, having them give us their van has been an overwhelming experience for Tony and me. We're both learning how to accept help, it's hard, but we're learning and realize we are lucky. To any family reading, this van was for both of us, but I feel I've received more attention being the sick one. Tony puts on so many hats for me everyday, I don't feel like anybody knows what all he goes through. He needs to hear how great he is. He's with me every day. He worries to leave me to go workout, he takes care of me even at the times I'm not easy to take care of. Thank you to the whole family from both of us.

There are many people with ALS who have nobody. If you're in a position, please find a way to help them in any way possible through this cruel, scary journey nobody should take alone.

Today, a huge thank you to Tasha and her clan.

Special note to Tasha: The Chain of Love won't end here!

Until next time, take care,

April

 

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Death with Dignity… My Thoughts

To my loved ones reading this, I want to say this is not a reflection of my intentions at this time.

It is something I believe most people with a terminal illness like ALS have had cross their mind. At this time a person diagnosed with ALS is aware they are dying, and it will likely be an uncomfortable slow death. I know there are a lot of patients who have chosen invasive ventilation and are happy, comfortable and living a life with quality and purpose. I’m thankful this life extending option is available.

There is hospice. Another thing I’m thankful for. I’ve experienced the care they provide and I commend all nurses who take on this responsibility. They can’t by law intentionally speed your death. They do everything they can to make death as comfortable as possible for the dying while educating and comforting the family. Even with the best efforts it is no guarantee you will have a comfortable death, or that they can predict the exact time or even day you will die.

You can put a do not resuscitate-DNR order in your Advanced Directive or Living Will, but if you’re at home and an ambulance is called because of respiratory crisis, unless they are shown the document, you will likely find yourself on an invasive ventilator no matter how clear you’ve made it to family and your doctor. It’s possible you will be even if they see the document. EMTs are trained to save lives and they do it well. I also commend them for all they do; however if you’re a terminally ill patient suddenly stuck with this life support that you made clear you didn’t want, you’ll surely not comfortable. You can still choose to have it removed, but when and how now has to be decided. Something you may have really wanted to avoid is your chosen legal agent being forced to make this decision. Choosing who can make decisions on your behalf early on is highly recommended so that your wishes are met. This doesn’t mean the decision is going to be easy for them if it comes to that.

I’ve given examples of what can go wrong even if you do all the right things to make your wishes clear, it’s no guarantee. You can still end up vented whether you want it or not.

Some benefits of assisted death: First is that it’s in your control. You know when your quality of life has reached the point of outweighing the benefits of living for you and know you will die painlessly within a few minutes. You can choose to have loved ones with you or not. It also gives your loved ones the ability to choose to be there or not. If it is decided others are to be present, you can choose a date and this gives them time to prepare emotionally and take time off work in advance instead of always knowing the call can come at any time.

I’m aware that one of the biggest obstacles for the terminally ill, even if they’re in a place that allows death with dignity is Religion, even if it’s not the belief of the person dying. Not wanting to go against a loved one’s belief is a huge deciding factor. A dying person usually doesn’t want to do something that leaves their loved ones in emotional despair. So they suffer on.

Many consider death something that should be left in their God’s hands. To me this makes no sense. If you would die without mechanical ventilation, isn’t that overriding God? I just don’t see the logic in it being miraculous to keep a life going that God obviously intended to end, but it’s not ok at all to end the suffering of a life God also obviously intends to end.  There are premature babies born every day with no chance of survival even with advanced technological care. That indicates this is God’s plan, his will, to end this life. When very aggressive methods are used to sustain this life, I never hear of anyone condemning the people involved. They are given hero status and it’s considered a miracle.

How can you rejoice in going against God’s will by saving a life God obviously is ending, but yet you damn a person to hell for deciding to end their life in a humane way when it’s a life that God is also obviously ending? I see no logic in that.

I have important decisions to make. One of the biggest factors is how my family is affected. I believe ultimately I will be supported in whatever I feel is best for me.

I think it’s wonderful we have and use the advanced technology to save a person that will otherwise die.

I also think it’s wonderful to have a choice to end a slow suffering death in a very simple, affordable and comfortable way. I emphasize the word choice.

These are thoughts I’m dealing with amongst many others, and that’s what this blog is for me. It’s an outlet for my thoughts and feelings. I’m thankful to not be progressing super fast, I am progressing though and I do have important choices to make.

Until next time, take care,

April

 

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Great Saturday and More...

I had no intention of blogging tonight but it's close to 5:00 am and I'm still wide awake so here I am. It's still Sunday to me even though I know some people are waking for work. Yes, I remember Mondays well. Days seem to blend together now. I know days by Dr. visits and I know when it's getting close to Saturdays with my Mom. I have time with Amanda and Brayden tomorrow. I will get to see Brayden's recently discovered ability to crawl, and Amanda is treating me to a mani-pedi. I'm pampered.

Saturday was crazy fun with Mom and Julie. We hit up Marshalls and Old Navy. Yes I did get some new shoes for my newly freed feet along with some clothes to fit my ever expanding body. My stomach is huge, especially on the right side. Now I know there are different body types. Everybody  knows the apple and pair shape. Now don't get me wrong, I've gained all over but in an odd way that 40 has nothing to do with. My stomach is fatter on the right side, my left boob appears larger than the right and my useless right leg is much smaller than my left. there are other oddities going on with my body shape too.

Let me explain these. ALS has decided to play around with my right side much more than my left. I have lost abdominal muscle and you'd be surprised how much fat and organs a little abdominal muscles can hold in place without effort. Mine are very weak so everything protrudes out, they're weaker on my right side so it protrudes out more. My left boob seems larger because the chest muscles on my right side have atrophied, so with my bra on and breasts moved up in the right position (that does have to do with 40) they become like two different sizes when they're not. My right leg is just atrophied all over so it's quite a bit smaller than my left which  is still holding muscle and fat.

Back to Saturday, I wasn't about to go try on anything that had to be pulled up my legs, so I just tried on tops where I found them. It was an unusual scene. I loved every second of it. We had fun, finishing the day off at Steak n Shake. I had a peanut butter and banana milk shake and some of Julie's soft chili cheese fries. At home I could have gotten them down better but it would have been a site. I have my ways of getting things down that I just can't do in public.

None of this mattered to me Saturday. We laughed getting me in the car. We used a transfer board a couple time and I went for it a couple times withe my left side strength. One time I was making it and Julie came in toward me from the driver's side. I saw it coming, she was reaching out for my left arm to help me along, I said "This is my good arm." It didn't register so when she pulled the arm I went straight down on the seat. My right arm can't hold my weight. Mom was still helping with my lower half so with some twisting and contorting I made it in the seat. It was one of the better laughs of the day. I have several but I'll stop there. I treasure the days that come together by me having the energy and others the time to spend. Too often I feel too weak, major fatigue or back pain going on to have a day like that.

I did get a little done on the site today. That's an ever evolving slow process, especially if I intend to put my efforts in the blog. The blog takes more than I ever imagined.

I'm glad I shared this happiness because I plan on going for some tough topics this week or sometime really soon unless something pressing comes up I want to share.

If my grammar mistakes bother you, just get over it. I'm not a professional writer and I mentioned this was a concern of mine from the beginning but I'm getting over it. I've seen much worse. If you're have trouble following, it's more than likely a comprehension or ego problem on your end than my writing skills, OK?

Until next time, take care,

April

 

 

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A Sticky Situation

It's been a rough day. When I woke up I felt like I needed to get my mask on right away, I needed air. Because of the full face masks leaking, I've been wearing my nasal mask only, even at night. It keeps a great seal and It's very easy to take on and off.  I usually have it on most of the night before going to sleep and take it off after I've slept a little. Some days I feel like I need it right away when I wake and some days I don't. Today I did, but there was a problem.

First I had sticky mucus in the back of my throat that felt like it could seal it closed. Add to that my nose was congested, but it was hard to blow anything out when I felt like I needed to breath in, and it felt like the congestion was sliding down to the back of my throat. It was different from what little experience I've had with post nasal drip.


I felt like if I put on my nasal mask it would push more mucus to the back of my throat. Tony helped me in my chair to the sink where I tried to cough up this sticky mucus and blow my nose. It wasn't easy blowing out when I strongly felt the need to take a good breath in. After a little panic and a lot of  tissue, I felt I had enough out to put my mask on. Halfway through the first inhale some mucus does come from my sinuses and stops right at my throat. I pulled the mask down and did get that out quickly fairly easy. It wasn't as sticky. After that, I put my mask on and I've been OK since. No sticky mucus and I've used my vent as needed throughout the day as usual. But this experience really scared me and I've been anxious all day. Now I'm more scared than ever to catch a cold. I haven't in years. Knock on wood.

I feel pretty sure this has to do with my big reduction of fluid intake. I know there is a suction device that helps with mucus. For some reason I've always thought they were used more when you have a problem with excess saliva, and I have the complete opposite problem, even when I was guzzling water.

This is ALS for you. As soon as you get settled in to a change, you're hit with another one. I'm still not fully used to that fact I can't walk. 

Tony put a healthy shake together for me today that tasted great and was easier to swallow. I've been told from the beginning water would get harder for me. We're both going to try to keep me better hydrated. Hopefully it's something I have more time before it's a constant problem.

Come on ALS, you sorry Mother Fucker! At least let me have a day to have energy enough to enjoy a shoe shopping day for the first time in over a year. Aren't you busy enough with all these new fasciculations you've been adding to me? No, they don't hurt physically, but I know exactly what they mean? I hate you ALS!

Some of my regular readers are probably happy to see this blog post about half the length of the others. I'm fatigued, irritable and I'm cramping from typing. I may take a break from blogging to give the website some attention soon. 

If you have any questions or have something you'd like for me to add to the site, please use the contact page and I'll get back to you as soon as I can. 

Until next time, take care,

APRIL

 

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ALS Minute By Minute

I have several posts in mind I want to do, but I want to do them right. I want to have the facts straight. The last thing the ALS community needs is more false information floating around. I have no planned post today so I'm just going to let my inner-thoughts flow. Everybody has good days and bad days. With ALS there are still good and bad days, but there is also what I call minute days. These days are usually busy and a lot going on, like a doctor's appointment, I want to shave, I need my nails clipped, and just too many unexpected things happening. Things like I can't reach the top shelf of my closet now, so I have to wait 3 minutes for Tony to get off of the phone, and during that 3 minutes I try to scoot with my weakening left leg to get something else accomplished only to realize I can't reach the the shelf where I keep my face wash. Then all I can think of is all the things I can't do. Tony stepped away from me with everything seeming just fine, then comes back in 3 minutes to me in a panic.

Today has been a real minute day. I've had minutes of feeling so much love from family. I've laughed. I've looked forward to things coming up with excitement and enthusiasm. I've felt scared as hell. Desperate for things to get accomplished so I can do things I want to do before I lose the ability.  ALS changes everything, and I mean everything. ALS is horrible, I don't think anyone would dispute that. It does have characteristics of other terminal conditions, but something unique to ALS is that  there is absolutely nothing to offer, no proven statistical percentage of a chance for a cure. I know there are clinical trials aiming for hope, but they're just that, a trial. Every person with ALS that's participating in trials is clearly told, "This is not meant to help you in any way." That goes for any trial for anything, and you understand they have to say that. We already know.

There is no, "We can try this treatment, but there's only a 50 percent chance it will save your life. It's hard to go through so it's up to you if you want to go for this or choose to live your shortened life as you want to." Obviously this isn't an actual quoted statement, and obviously cancer comes to mind reading it. It's also obvious that would be devastating to hear. I've lost family to cancer and seen it up close. It's devastating for the patient and the family. I want to make that clear. This is in no way a, cancer is nothing compared ALS, post.

My point is I don't know of any disease, other than ALS, that you are given absolutely no offer at all for for a possible cure. Now you'll hear people, including myself, making statements like, I won't go down without a fight, ALS hasn't met the likes of me, and other similar statements. But we haven't had an ALS specialist tell us, "We can offer you this to possibly save your life, it has saved others." Unless they're seeing a snake oil salesman. The only FDA approved drug for ALS is Riluzole. It's about as far from a cure as you can get. It offers up "possibly" a few extra months of life. Life that is, by the time you're at those last few months, hardly a life you can live on your own terms.

The FDA can help by allowing ALS patients to take higher risks in clinical trials, and by letting us move through trial phases faster. We're waiting on them. I hope to get the news they've made that decision soon. Please!

To add to the fact that we know there is no cure, we are also always aware that we're getting worse. The average life span given is 2 to 5 years. It's not like we can say, "Well I'm going to spend two to five years skiing, jumping out of planes, driving across the country, do a little globe trotting, then hit up vegas before checking out." If you are lucky enough to be diagnosed early in progression, you best get what you want to do out of the way fast because you have a lot of planning to do. You are, in different orders, going to need a very expensive power wheelchair, a wheelchair van, a wheelchair accessible home. You'll need to have somebody dress you, feed you , give you a shower, wipe your ass, pick your nose, I could go on but I think that's enough.

You have decisions to make about the options of extending your life. You can't eat anymore? Well you'll starve to death, or you can have a feeding tube placed for nourishment. You can't breath on your own anymore? Even with that non-invasive mask you wear 24/7? Well, you can have a tracheostomy. That can really prolong your life for a very long time if everything goes well. Great! Don't forget, that will just keep air flowing, but you will need very expensive care 24/7. Also don't forget, these things may prolong life, but they don't stop progression of the disease.

You will with no doubt reach the point of total paralysis except your eyes, but great news! You can still use your eye gaze speech device to enjoy conversations and let someone know if you're uncomfortable or need that little spot on your ankle scratched. It turns out it's not as uncommon as once thought to lose the ability to move your eyes too if kept alive long enough. That is called a complete locked in state. You are completely aware of everything around you, but have no way of expressing a thing, nothing. So you will want to be sure and let it be known way ahead of time what you want before that happens.

This was a roll out of my inner thoughts in real time. We all have our minutes, ALS or not. Priorities and perspectives just change after ALS or any dramatic, life altering change. I'm still fighting like so many others!

Until next time, take care

April

 

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A Gain For A Loss

OK, at the end of yesterdays blog post, I mentioned lifting up a bit. I feel like adding a little sugar to the spice.

When I was first fitted for my AFO, It was so nice to be able to walk with a barely detectable limp. This came with a price I was very willing to pay, actually already paying, my shoe options were limited.

Anyone out there just getting an AFO, I did learn that New Balance and Sketchers tennis shoes worked best for me. The shoe needs to be wide enough for the brace, especially at toes and deep enough at the heel. I don't know if these shoes will be best for everyone. I had a solid fixed AFO. I where a regular 7 shoe size and I have a narrow heel. To the right is a picture of my AFO in my Sketchers.

Now I figured I would be getting my drop foot all fixed up, and this was all temporary. It turned out to be the first of three adaptions to keep me walking. (to follow was adding a cane, then rollator.) so I was pretty disappointed to learn this was permanent. Then, what about my beloved shoes? My choices became steel toed construction boots or tennis shoes that took a lot of trying on to find at first. I'll take the tennis shoe, thank you.

When I recently lost the ability to walk I remembered reading online a while back that the best thing about being in the chair is you can wear  the shoes want. How exciting! I want  to go try on shoes now. I will be hitting up thrift stores on Saturdays with my Mom, and I've been looking at amazing online deals for fun.

I've always been a thrifty shopper, but I do love to shop. If I'm not at a thrift shop, I'm a TJ maxx, Marshalls person usually. I love to shop online too. Now that I can't just hop in the car and go to these place I have a lot of fun shopping online. Budget is real tight right now, so there are no big shopping sprees, but I've always enjoyed real window shopping too. It's just as fun on line to me.

I still have pretty good use of my hands overall, especially my left, but they've gone enough to make putting my contacts in pretty difficult. It's been so long since I tried, I'm not positive I still can. It would definitely be a time consuming chore.

My youngest son, Tyler, was due for glasses not long before my diagnosis. He bought some from an online eyeglasses store, Warby Parker, while visiting home. It's pretty neat because you can look through their collection and chose up to 5 pair you like and they'll ship you the frames with Plano lenses to keep up to five days and then return in the box they send. Free shipping both ways. He chose the Langstons. I really needed a pair of glasses so I bought the women's version of his Langstons. These glasses were just under $100.00. The least expensive pair of glasses I had ever bought. The only downfall is for us aging people needing a little help reading is they don't offer progressive lenses. Now $100.00 seems expensive.

My newest guilty pleasure is buying glasses online at goggles4u.com, they usually have great deals, especially on their home brands. I have bought glasses from there for about $10.00. That includes shipping, and I have a strong prescription. That doesn't include progressives, but they do offer them. I love spending the $10.00 and trying all different styles and colors. I tend to like them on the wide side for my face. There are several online glasses stores that have $6.95 and up. zennioptical.com is another one worthy of checking out. Just be sure to have your pupillary distance correct. If you already know your prescription and don't need an eye exam, Walmart optical is good about measuring it for you on the spot if not busy. That was our experience.

Above is a small collection of my inexpensive glasses.

 

That's 3 ways you can turn a loss into something new. They're fun even if you didn't lose anything.

1.Newly in a wheelchair and no longer need an AFO? Now you can wear any shoes you like, plus they stay clean and won't get worn from walking. Find a nice buy, sell and trade shoe store and you'll get top dollar for your shoes when you take them back in great shape!

2. Have you lost the ability to drive but love to go shopping, or just browse? Get on that computer and shop or browse your heart away!

3. Are you a contact lens wearer and need to change to glasses?  No matter your budget, shop away online!

I hope any of this information is helpful to someone.

Until next time, take care,

April

 

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My Face

Hello again, I'm back. Hopefully I can keep today's post an easier read. I do want to pick back up on something I didn't get to last night.  My face.  I've known since diagnosis ALS affects the voluntary muscles, but I never really thought much about the face. I'll give myself a break on that since I was thinking more about muscles that kept me walking, dressing, wiping my own ass, and especially breathing.

I first noticed a slight down turn on the right corner of my mouth, but for some reason I thought that's as far as it would go. I have had twitches occasionally around the face between lips and nose. Don't know what their called, but you know the parenthesis that become more apparent with age. It's been a while, but I went a couple of months with a ripple starting at back of jaw to front side of chin and oddly only on my left side. The only cramp-like pain I've had was on the right side of jaw. That was at the same time I had a crown put on a back molar. I kept telling my dentist my jaw hurt really bad. He couldn't come up with any reason except possibly TMJ at the time. Other than those things I thought nothing of my face until several months ago I started noticing that the right side of my face was dropping, especially the chin, and then around my jawline. When I first noticed, I really had to point it out for people to notice. Now if they try to say they can't tell, I just know they don't want to say because it is very obvious. I don't want to make anybody uncomfortable.

Surely everyone reading this either heard this phrase from their parents, said it to their own kids or at least heard of parents saying, "You better stop making that face or it will get stuck like that." Well, my face has never excactly been stuck in an expression, but if I gave a big smile or the expression of pain I could feel it slowly relaxing, sometimes needing to help it along. Very strange feeling. By this time felt sure it was ALS related. I've always been able to do the eye brow roll or easily just arch one at a time. I can still do it, but I have to be very intentional about it. We moved a wall mirror in the room from the hallway after painting and I can always see my face. I look and I'm thinking my face is relaxed, but it usually looks like I either have a grimace expression or I'm about to bust out in tears. It kinda freaks me out.

The real kicker is I've always had this auto-pilot instant smile when someone takes my picture. My sister usually  jokes with me about it. She's usually the big picture taker at family holidays. She'll say, "look up April, I'm taking your picture," and I just instantly smile a wide smile.

Since my diagnosis, my husband has been taking more pictures of me. He started saying "smile for this one". I thought I was. It felt like I was smiling ear to ear, then I would look at the camera and there was no smile. It's strange because I feel like my muscles are doing it when they're not. You can see an example on my home page. In the picture of me and Abby in the wheelchair, and Tony is kissing me. I thought I was puckering. He started asking me "what's wrong honey?" a lot. When I didn't feel I was indicating any thing was wrong. He thought I looked sad, mad or in pain. In pictures I'd try really hard and it just looked weird. It looked nothing like my smile, more like I was trying to intentionally have a crazy looking smile. I looked at some footage he filmed not too long ago and for the first time I saw the right side of my mouth really drooping when speaking, my lips all uneven. Nobody told me. I don't blame them. I guess they figured I knew and thought it would be rude to bring it too my attention.

Tony makes sure to keep telling me how beautiful I am. When just thinking of it, I appreciate it and it means so much to me how he tries to keep my morale up. It depends on my mood and level of acceptance I'm feeling at the time as to how I might react when he's saying it. I have for now, found a way to get my face relaxed and have a little closed mouth smile.

I can see how this my seem vain and insignificant when I'm dealing with a terminal disease, but I don't think I'm the only person in this position that feels this way. I'm not claiming I'm some exceptionally beautiful person that has suddenly turned disgustingly ugly either. I'm just trying to stress how cruel this disease is.

While trying not to sound delusional, it can just feel like this disease has a personal vendetta against it's victims. Like before it goes for the real kill it wants to painfully throw you around a bit first saying, "Oh you like smiling for pictures and making your unique expressions? OK, I'll go ahead and take that right now!"

I want to also make it clear that in some ways my progression has it's advantages. I also am very aware that so many have lost the battle sooner than I have lived with it now since diagnosis.

Real soon, maybe tomorrow, I may lift up a bit and mention some advantages that come from the most dreaded losses. Stay tuned, it will make sense.

I want to end by saying I am thankful for the things I'm still able to do, which is a lot compared to later stages. Also a big thank you to all the caregivers out there. Their role and suffering should never be underestimated.

Until next time, take care

April

 

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Progression... Always Wondering What's Next

Hello, I feel like touching on progression of ALS today.

First of all ALS definitely has it out for the right side (dominant side) of my body, more than my left. Sometimes it's hard to know for sure which really began first the top or bottom. However the move upward is faster and more severe. I remember when my ankle muscles started getting weak. I kept feeling I had mildly sprained it, I remember first not being able to stand on my toes or heel of right foot and told I had drop foot. This coincided with my back injury. At this point I was fitted for a custom AFO. It didn't help the pain but it improved my walking drastically. I had been swinging my foot to the side to walk after my back injury and this enabled me to walk almost normal, I remember first noticing my right calf muscle, which had always been rock solid and easy to flex starting to soften. I started noticing turning keys or clipping my nails made my index finger sore. About this time I noticed my water often running out of the right corner of my mouth and an ever slight slur.

I also had my ways to explain it away. My ankle hurt because I'm clumsy and my right foot has always turned in if I wasn't keeping myself aware or wearing high heels. I couldn't wait to wear them again. So I concluded that was causing the ankle problem. The drop foot was from my back. I was baffled about my soft calf and started trying to work it out. I tried using more yoga poses geared at strengthening them but found it getting harder to keep my balance in any pose that needed balancing strength from right leg. Well, I've always been clumsy. I always had good and bad yoga days, clumsy and stress was causing more bad days. My water was dripping down my chin because I wasn't paying attention. My fingers were stiff and sore because I was getting arthritis. I decided my little slur was because I had gotten carried away being silly at home and talking in a real country voice too much. Yes, I'm serious. I remember telling myself to stop because I'm starting to really talk like that in public out of habit.

You can make yourself believe crazy things in desperation. My body had been telling me for a while something was off but I didn't want to believe it. I mentioned it to Tony, but didn't want to sound whiny. After-All except for most people thinking I was a little underweight, I was the picture of health. Lean and fit, I worked out and ate healthy, except for my addiction to sweets. I worked hard to keep my caloric intake where I wanted and still get the right nutrients and my sweets too. The back injury changed my focus. I wasn't able to do anything to notice these symptoms because of the pain. A lot of  those symptoms were forgotten because I was unable to do the things that made me notice them. It did start the tests rolling and a big puzzle started to take form.

Now that very slight slur is a, "that bitch is drunk or something" slur. Very hard to be understood over the phone. Very hard to project my voice. The more I try the more hoarse it gets. I'm best understood in person very close up and no background noise and I can talk very softly. My water does run out of the corner of my mouth a little more often but not much. Now It just seems to want to stay in my throat and come back up in small amounts and I re-swallow. It used to be easy to gulp down a 16 oz bottle real fast. It was much easier to stay hydrated. I don't really remember eating problems back then, but now forget anything that takes real chewing. My jaw tires fast. I've noticed my food seeming to want to slide to the back of my throat before I'm ready. I've found plenty of soft foods and I'm certainly not having trouble keeping this extra wait on. My doctor wants it that way, but I so miss my thin body. I'm keeping the weight on as long as I can because I know the time will come that I need it.

This is about the state I was in at diagnosis. Now my right calf is complete mush. My right thigh has atrophied a lot; I first noticed on the inside area right above knee. It cramped and twitched a lot and got smaller. Then for weeks my whole front thigh would cramp up, very painful. This is when I'm really getting the pattern for me. There's painless twitches. Then a constant feeling of soreness is best I can explain, almost like a good hard workout soreness on day two or three. Then comes the extreme cramping. then I can see the muscle atrophy before my eyes, then I can't use it. This is how my walking ended. All my leg muscles compensated for the loss of others til there wasn't enough left. It can't come close to holding my weight and when I try to use it for just a little support, it gives. There is some muscle because, although much less intense, I still get that whole front quad cramp. I just say to it, you're fucking gone, I know, you can stop now!

I've always had good upper body strength for a female. I did pull ups, putting Tony to shame. I was proud of my muscular arms. I could put many men to shame flexing my forearms. Yes, I'm bragging. During a short hospital stay, for planned surgery,  three years ago a nurse came in and said, "Oh, we have to get that IV changed. your vein has blown." Looking closer she mistook my muscle for swollen tissue, and brought  other nurses back to look at my very slender but muscular arms. Now my right arm isn't mush but it's definitely not muscular. Just doing the flexing motion hurts, and I can see it's atrophied and sunken compared to my left. My left arm, hand is now my dominant. I'm sensing my right arm to be the next fully useless limb. It's twitching more and sore and those hard cramps are showing up. My fingers are still usable in comparison to others, but they're weakening and want to curl. I can still type with them but pay the price. Sometimes I manage to open a water bottle but less and less. Now my left side seems to be all in unison. not more at one end, just slowly getting weaker and the twitches are spread equal.

I could go on but I imagine you have a life to live. I planned on talking about my face. Maybe tomorrow. I'll just say I only know my real smile from pictures now.

Until next time, take care

April

 

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My Family Knows Now

HEADS UP -  This post is some info about my family. Not much ALS related but I hope you still read on.

I did it!   I told my family about my blog starting with my parents in person.

My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.

Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you

Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you

All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.

I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.

When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.

The oldest is Steven at 28 years old

Next is Tasha at 27 years old

We have Tyler at 23 years old

Last but not least is Amanda at 22 years old

Getting into Grand-kids is so simple yet tricky.

Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family.  Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.

OK, shooting for simple...

Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.

Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.

Our boys have kept away from the parenting life so far.

It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!

They will be added to my family pictures.

This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.

This post is for those interested in the person behind this ALS case.

Most Importantly, this is for my family. I love you all!

Until next time, take care,

April

 

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Deciding when to tell... a rambling post

I feel like I'm living a double life here and will be outed at any moment. I've always been a private person. My family is used to it although sometimes they've accused me of bordering paranoia. So many people have begged me to join facebook. I hate facebook. Tony does have an account so if anything important comes up, he usually tells me. The way I've shunned all social networks from their beginning, they will surely be shocked to hear I'm putting my life out there.

I mean I plan to go all the way. ALS gave me no choice. So tomorrow is Saturday. Since my diagnosis, Saturday is time with my Mom. I like to call it Saturdays with April, but nobody else seems to find it the least bit funny.  It started out as our movie day, I made a review page that I keep in a 3 ring binder, and we wright our little reviews, more so about our experience. The Goodwill is part of our day too. I love the Goodwill. Mom would get a cart and bring it to me to use as my rollator. It's been a blast. A few times when I haven't felt well we rented from redbox and watched a movie from my bed. I still can't believe I watched Magic Mike with my Mother. I can hardly stand watching a kissing scene with her. I do live in the Bible Belt after all and was raised strict Baptist. Maybe more on that another time.

Since I've lost the ability to walk and don't have a wheelchair van yet, it's been more difficult. It's not impossible. Tony can take me and manual chair to the theater and Mom can push me, and tony pick me up. We haven't yet, but my Mother does knows her way around a wheelchair. She took care of her sister for a long time. She had Freidrich's Ataxia. It's a neuro-muscular disorder. Yes, I've checked. There is absolutely no link to my ALS. She had childhood onset which has a faster progression. I remember my Mother and Grandmother giving her a bath after leaving their full time job for the day. I was probably about 5 and couldn't wait for this time be cause I could ride around the house in the wheelchair. I had so much fun. My God, the irony.  My aunt by this time had little muscle control and typed with her nose what she needed done for the day. She was a beautiful, intelligent woman with her life cut  very short. She died in her mid-forties. My grandmother spent many years getting up to turn her every two hours. She worked a full time job at a hospital and she was the wife of a pastor, which in itself is a full time job. I was about 10 when My grandmother came to terms with the fact she couldn't do it anymore and had to make the most difficult decision to have her daughter placed in a nursing home. Another pastor came over to help break the news to my aunt. I still remember the gut wrenching cries coming from that room. Do not judge my Grandmother for that decision. It really wasn't a choice. There was no home health care in those days, no real support at all, and it was way past the point of being dangerous for her to be home. I know my grandmother never fully recovered from that day though. From the guilt she shouldn't have carried.

My Mother spent every Saturday for the remainder of my aunts life going to the nursing home and making sure she was being treated right, She still gave her a bath every week too. About once a month she took her out shopping for things she had typed with her nose. She got her in and out of a wheelchair alone. she was frail but dead weight. She brought her home and took her back every Thanksgiving and Christmas to be with the family, and many young birthday parties were at the nursing home. There was a nice area outside perfect for it.

Now my Mother is the fulltime caretaker for her other sister disabled by Type 1 diabetes. I don't know how Mom does it. She just says she thinks it's her purpose in life. Now her Daughter is dying? She doesn't deserve any suffering. She is so inspiring, a true saint in my eyes.

I feel like I've totally lost track of my post , but I'm not changing it. I said this is where I'll come and say whatever I'm thinking and this is how I think. One thought leads to another. It's like going to the computer to quickly look up a toothpaste brand or something simple, then two hours later you're watching 'funny cat videos' and thinking, what did I come here for?

Oh yeah, my big secret life story with ALS online. Since my first post I've wondered who in my family may have spotted me, if so probably on twitter when I'm tweeting  slightly out of my mind from insomnia that ambien is starting to lose the battle with too. When I see any of them, I'm looking for clues. Are they saying certain things they would only know if they've been reading? A couple of times it seemed like it.

So I think I'm going to tell my Mother tomorrow. I'm nervous. Not so much because of what I'm doing, but the fact I've used curse words. Remember, I'm from the bible belt and spent several years with my 'by the book' pastor Grandfather.

I just want it out though, I've made up my mind, I"ll be who I am here. I know, no matter what she'll still love me. I'm forty. I can say fuck if I want. I haven't told anybody though. Not even my kids, only Tony. I want it out because I would like to bring them up some and show pictures too. I've always asked people not to post things or pictures about me online so it's only right I give the same respect.

I'm nervous, but I think it will make me feel even more free, and will be a relief when everybody knows. So I'll start with Mom, then rest of the family. I will be set free. Nobody worry, I will never post anything hurtful or private about another person without permission. Only about me, I'm the open book.

I have a request for any old friend or family members that if you do start following my blog, please let me know. I'm just curious. I think I've rambled enough and Tony just served me some delicious food. So I'm off...

Until next time, take care

April

 

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