Chair time?

[tripete]

My legs and arms are getting much weaker but I am still functional with both and can do things like walk around a grocery store (with minor foot drag and stumbling). However my breathing gets so bad that I have to stop and try and relax my breathing, which usually does not help, so I push through and just finish the task I am doing.

Do people use a chair just because of the breathing? I don't think a walker type device would help with this.

I asked my ALS nurse about a portable bipap (trilogy) and she said that without using a walker or chair that it would not be useful. She stated that they where not backpack type units, but could I put one in a backpack?

 

[Nikki J]

Even if you could put in a backpack and I don't think it would work well and could damage the unit carrying around that weight would be too much of a stress on your body and would make breathing harder. Yes people go into chair for respiratory insufficiency with ALS - also cardiac and pulmonary diseases

 

[Nuts]

Pete, my hubby fought the chair something fierce, but recently he admitted that it gave him a great sense of freedom when he finally got in it. No more dragging around--he zips past everyone. Get the chair and then hang the bipap on the back-best of both worlds. You can still walk around the house while it's still safe and get out of the chair anywhere you like--just think about it as getting you there faster and with more energy left so that you can take those precious steps where they matter the most. You can also carry your bipap with you safely.

 

[MaxEidswick]

>Get the chair and then hang the bipap on the back-best of both worlds. You can still walk around the house while it's still safe and get out of the chair anywhere you like--just think about it as getting you there faster and with more energy left so that you can take those precious steps where they matter the most. You can also carry your bipap with you safely.

Ditto that!

better than falling !

 

[affected]

Definitely get the chair now and conserve the energy to keep walking at home as long as you can.

"Pushing through" is not good for a PALS.

"Getting smart" is however. Smart is using a chair for the times you are going to be taxed, like when going out. It means you are less likely to have a serious fall and are going to conserve your energy for more enjoyment.

Bipap is going to multiply the ability to have the energy to enjoy going out

 

[gooseberry]

Use the chair Pete. Steve has finally gotten over the hump of fighting it when we go out. Now we can go more places and do more things because he will use his chair. Before his breathing would be so affected after 7-10 steps that he would need to rest. It made for short trips and a lot of frustration. Now we go out out for a few hours.

 

[azgirl]

Get the chair Pete. It takes at least 6 wks to arrive. It's allows so much more freedom to move around. No downside once you wrap your head around the idea - that's the tough part.

 

[swalker]

Another vote for "get the chair" and "use the chair".

I have significant respiratory issues. I fatigue very easily and my stamina sucks.

Once I started the process, it took almost 4 months to get my chair. It has given me my freedom back. I can still walk OK for short distances. The chair allows me to conserve my energy. When I use the chair, I can do more and still feel so much better later in the day. I love my chair.

Today I went for a solo "hike". I left the house and wheeled 4 miles up a bike path (no cars) gaining almost 1,000 feet in elevation. I saw several folks and had a nice chat with a guy riding the path. It was absolutely wonderful. I could not begin to do that without the chair.

I strongly encourage you to get the chair while you still have mobility. I have spent quite a few hours getting the chair set up just right for me. Having some mobility made this possible and fun to do. I can't work on a car much anymore, but I can sure wrench on the chair! I keep some tools along with other essentials in a small pack that hangs off the back of the chair.

Steve

 

[lgelb]

Pete,
I have little to add but an up vote to this thread. Order the chair and you will find by the time it arrives you will be more than ready.

 

[tripete]

My ALS nurse is getting one ordered for me. How do you transport it? We cannot buy a van, and only have a car. Can you put a trailer hitch on the car and then a transfer platform?

 

[Nuts]

If your car will handle the weight of the platform life in a trailer hitch that will work for awhile, but you'll need to be able to walk from the lift to the car door and then get into the seat--something that will become increasingly difficult and dangerous with progression.

 

[cheerleader]

Tripeete, think you will find some very reasonable used vans that are already handicap accessible, so you don't have to pay the cost of a new one. (I found some for between $2000-5000 range for a friend recently.). Google "mobility vans in the Lancaster area" and many options will come up. You need to be safe, and temporary solutions may end up costing more in the long run. Good luck. Donna

 

[Nikki J]

Donna is right. Check with your local ALSA too. Sometimes CALS will sell the vans at a very fair price to another affected family. My sister found one that way

 

[MaxEidswick]

>My ALS nurse is getting one ordered for me. How do you transport it?

which one? weight is a big factor ....

 

[MaxEidswick]

>My ALS nurse is getting one ordered for me. How do you transport it?

which one? weight is a big factor ...