Posts Tagged ‘Power WheelChair’

Today didn’t go as planned. It’s been an ALS day. It is Saturday, the day Mom and I do something. We had planned to go see, The Great Gatsby, this afternoon but I had to cancel. I had a rough night all night. I puked in my sleep. Not a lot, but it  woke me right up. No matter how many times I brush my teeth or rinse my mouth, I have that putrid taste and my tongue is burning. I don’t know how much of that was from ALS but I believe it would have been handled better and I’d be feeling fine now if not for ALS.

Mom usually still comes over to visit on bad Saturdays, but I just felt the need to sleep, even though I couldn’t, so Tony called her. Mom and I will make up for it, she may visit tomorrow, or who knows, I may be up to leaving.

Today I was so sore I couldn’t speak to Tony much. He stayed in his office with the baby monitor, coming right away with the quietest call from me, until he gave in and is now taking a nap beside me. I know this exhausted him too.

I’m so exhausted and I’m freezing in a room that’s not cold. My temp is fine. My muscles ache, especially in shoulders, my legs are mostly twitchy and crampy.

I feel so weak that I don’t argue when Tony pushes me to the sink or bathroom. I’m too weak and just drained. It’s hard to explain. I started to compare it to the flu but it’s very different. I’m weak with twitching and cramping muscles. Today isn’t one of those days when I feel like I can just get up and run downstairs, Today I know my limitations. Limitations caused by ALS.

It’s getting better now but in the night and first half of the day it hurt to breathe in very deep. Mainly in my mid to upper back that wraps around the sides. I hate that feeling, I’m scared my diaphragm or intercostal muscles are cramped and causing the pain of not being able to breathe deep. Having my ventilator on intermittently has helped and the stiff/cramp feeling in that area is gone. It fits the course though. I’ve been feeling more and more twitching in that area for a while. Lately I’ve been having more and more cramping, going by other muscle patterns, something is being killed. Hopefully some other back and side muscles. I hate you, ALS!

I’ll end with saying this has been an ALS day. ALS wins today in two main feelings – anger and fear. ALS won today, but there are many days ahead. ALS is a daily battle, but you know how the war ends. How it has ended for so many before me. If I keep on, this will turn into a bitchy, whiny ALS cursing mess. Frankly I don’t feel well, and I don’t want to give ALS the honor.

I do what I can and still wish for a true treatment or cure. As I move forward I take ALS day by day. Minute by minute.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April

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 attherohogroup.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.

Please visit my website: http://thealsexpress.com

April