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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