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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Thursday, April 25, 2013
Tuesday, April 23, 2013
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 40th 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]
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 40th 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]
Monday, April 22, 2013
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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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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Thursday, April 18, 2013
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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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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Tuesday, April 16, 2013
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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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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Sunday, April 14, 2013
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
[subscribe2]
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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Thursday, April 11, 2013
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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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
[subscribe2]
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