Anyone using wheelchairs or scooters?

[warmwaters]

I've reached the point where I have very little energy, so I'm unable to do things like shopping, going museums or parks, or really anything that requires a lot of walking or standing. I'm thinking about getting a wheelchair or a scooter, or maybe renting one for a while to see how things work.

Does anyone use a wheelchair or scooter?  What are some of the issues that I should be thinking about?  I discovered that the scooter batteries are about 30 lbs, which means I can't use the scooter by myself - I will need someone to load it in and out of the car, and take the battery out for charging.

I'd like to be able to travel more, and think that these might help.   Just looking for any stories about how to make this work!

Thanks

[penelopeclark]

I use a scooter when I shop or go places where I have to walk. I use what they have available because its easier. I normally walk wth a wheeled walker that has a seat incase I get tired I can stop and rest. This is because I have vertigo with my sjs and am unable to be where there is bright lights or wide open spaces with out feeling dizzy

[engy]

I do not use one daily but I do use wheelchair when we go on vacation! It has helped a lot!

[Kendo]

I've had to use a wheelchair in a museum last summer. I'm too weak in the arms to wheel myself so DH was rolling me around. I found I was often too low to see exhibits or labels.

Recently I've borrowed a walker with a seat and found it helpful for an art gallery. I could sit on it and pull myself from painting to painting and was just at the right height. It is light enough that I can haul it up a stair or two to get into inaccessible stores or restaurants. Don't know how I would have managed with a scooter. The walker is only 8 or 10 pounds and has a basket for stuff.

I'll be using the walker for sitting at a music festival as I can't stand for 8 hours a day. I'll need a small cushion for padding but it beats not going at all. I'll be travelling by train and bus alone so will get to see how hard another city is to navigate.

Last summer I started with a cane for stability and it was much more portable, although being a klutz, I kept dropping it or leaving it behind! So I'd suggest borrowing or renting something first to find out what works for you. Good luck.
Kendo

[warmwaters]

Do you take one with you, or rent one there?  Is it one that people push, or is a motor one?

I do not use one daily but I do use wheelchair when we go on vacation! It has helped a lot!

[warmwaters]

Yeah, being in a wheelchair makes it difficult to see, and to talk with people. I have been using one for airports for a couple of years now. I've noticed it makes people assume that you are slightly deaf and not to bright, as they speak in a loud voice, fairly slowly.

I don't have the strength to do the walker with the seat myself, but I can see how that would help - gives you a way to rest as I am looking at things.  And I really like it as the way to events like music festivals or open air markets.

I've had to use a wheelchair in a museum last summer. I'm too weak in the arms to wheel myself so DH was rolling me around. I found I was often too low to see exhibits or labels.

Recently I've borrowed a walker with a seat and found it helpful for an art gallery. I could sit on it and pull myself from painting to painting and was just at the right height. It is light enough that I can haul it up a stair or two to get into inaccessible stores or restaurants. Don't know how I would have managed with a scooter. The walker is only 8 or 10 pounds and has a basket for stuff.

I'll be using the walker for sitting at a music festival as I can't stand for 8 hours a day. I'll need a small cushion for padding but it beats not going at all. I'll be travelling by train and bus alone so will get to see how hard another city is to navigate.

Last summer I started with a cane for stability and it was much more portable, although being a klutz, I kept dropping it or leaving it behind! So I'd suggest borrowing or renting something first to find out what works for you. Good luck.
Kendo

[paisley62]

Hi,

I am sorry that you have gotten tired to the point where you might need a wheelchair or scooter.  I have some idea what you are going through, because I too am thinking about getting one, have been for a long time now.   

The problem with use of a scooter for me, is that I risk becoming bedridden.  That is exactly how it could happen to me - the less I use my muscles, the weaker I get. 

I cannot manage physical therapy with, for example,  "three sets of three" of raising this leg, then doing the same on the other leg, then doing "three sets of three" on another body part.  I can't do "three sets of three" on anything without just getting more and more tired.  My exercise sessions must, by necessity, be ridiculously short - just minutes at a time to be sustainable.  In reality, I just try to include an extra move, walk, bend, or stretch into my daily activities, although I probably can, and should, do at least a bit more than this.

I don't recover my energy back after any physical activity, including fun things, even the next day.  I really believed that physical therapy and exercise might help me get substantially better, and tried every way I could think of to do it for four months recently when I attended physical therapy sessions three times a week, but ultimately the fatigue was simply not endurable.  I did not get more energetic and stronger.  I got extremely, profoundly, exhausted, to the point of being sicker, but I did get stronger from it. 

So for exercise, I try to walk short distances outside, do really minor "range of motion" exercises such as one deep knee bend once in awhile, then later one gentle attempt at touching my toes, etc., just things like that, very minimally, not even every day, to stay a little flexible.  When I feel good I do walk a little outside, although long periods of time can pass where I don't do this beyond walking from the car into doctor's appointments, or other things I am forced to do.  I do walk around inside of my house, and want to retain the ability to do that.

If I realize I am getting really weak, practicing isometric exercises minimally will get my strength back enough to stay on my feet and not be confined to bed, as long as I can remember, and stay motivated, to do them enough.  I think butt squeezes are the must useful single exercise I have found that I can actually do - this single exercise strengthens the exact muscles that I need to be able to get up out of a chair, stand, and walk around.

Energy spent exercising is done at the expense of doing other things, so that is one reason it is hard for me to do - if I have any energy I usually would rather play a musical instrument or bake something rather than do daily short sets of isometric exercises or take a really short 15-minute walk outside in bad weather, or even nice weather, much of the time.

Therefore, for myself, for my needs, not yours or anyone else's, I am putting off getting a scooter or motorized chair as long as I can, simply because I fear becoming weak and bedridden, and want to force myself to use my muscles so I can remain as independent, and as functional, as possible for as long as I possibly can. 

I don't want to go many places any longer because it takes way too much energy - even if I had a scooter, so hopping out of my car into a scooter to cruise long distances around a shopping mall, craft or music festival, etc., is not in my plans, but scooters could very well help other people do things like that, or other things that they want to do.

[Skylar]

I'm so glad that paisley62 responded along the same lines that I will. I saw my mother go into a wheelchair and within a short time lose the ability to do much more that stand for very short time while transferring in and out of the wheelchair. As we get older it's easier to lose muscle than to gain it with exercise. I'm sensitive to this because five years ago I could barely walk - Myositis in my arms and legs left me not able to get up from a seated position and my doctors wanted to put me in a wheelchair. I fought it with careful exercise and eventually changed my diet so I have a happy ending to my story as I can now walk for miles and my energy level is close to normal.

If I was in your position, I would rent a quality walker with a decent seat to sit in if you need a break. Try to get as much walking in as possible on a daily basis so you will have that ability when you do travel.

I did find one walker that can be used also as a wheelchair justwalkers.com/ultra-ride-8482.html, perhaps there are others. There will come a time when many of us will need wheelchairs, scooters etc. but the more you use them, the less you will be able to be independently mobile without them.

[CMNK12]

   I have utterly refused too secondary to pride. I know it would make my life and my families easier when we try to do things but I just can't.
  So for now, I will limit what I do to what I can do, if that makes sense. I take short trips out that are manageable for me and I just walk so slowly as to not make myself worse. It is such a personal choice. One day I may be there but for now I am going to fight it with everything I have.

  I have to agree with if you don't use it, you loose it too. Muscles do atrophy, very quickly also.

  Everyone has to do what is right for them at the right time. CK

[slccom]

Hi,

I am sorry that you have gotten tired to the point where you might need a wheelchair or scooter.  I have some idea what you are going through, because I too am thinking about getting one, have been for a long time now.   

The problem with use of a scooter for me, is that I risk becoming bedridden.  That is exactly how it could happen to me - the less I use my muscles, the weaker I get. 

I cannot manage physical therapy with, for example,  "three sets of three" of raising this leg, then doing the same on the other leg, then doing "three sets of three" on another body part.  I can't do "three sets of three" on anything without just getting more and more tired.  My exercise sessions must, by necessity, be ridiculously short - just minutes at a time to be sustainable.  In reality, I just try to include an extra move, walk, bend, or stretch into my daily activities, although I probably can, and should, do at least a bit more than this.

I don't recover my energy back after any physical activity, including fun things, even the next day.  I really believed that physical therapy and exercise might help me get substantially better, and tried every way I could think of to do it for four months recently when I attended physical therapy sessions three times a week, but ultimately the fatigue was simply not endurable.  I did not get more energetic and stronger.  I got extremely, profoundly, exhausted, to the point of being sicker, but I did get stronger from it. 

So for exercise, I try to walk short distances outside, do really minor "range of motion" exercises such as one deep knee bend once in awhile, then later one gentle attempt at touching my toes, etc., just things like that, very minimally, not even every day, to stay a little flexible.  When I feel good I do walk a little outside, although long periods of time can pass where I don't do this beyond walking from the car into doctor's appointments, or other things I am forced to do.  I do walk around inside of my house, and want to retain the ability to do that.

If I realize I am getting really weak, practicing isometric exercises minimally will get my strength back enough to stay on my feet and not be confined to bed, as long as I can remember, and stay motivated, to do them enough.  I think butt squeezes are the must useful single exercise I have found that I can actually do - this single exercise strengthens the exact muscles that I need to be able to get up out of a chair, stand, and walk around.

Energy spent exercising is done at the expense of doing other things, so that is one reason it is hard for me to do - if I have any energy I usually would rather play a musical instrument or bake something rather than do daily short sets of isometric exercises or take a really short 15-minute walk outside in bad weather, or even nice weather, much of the time.

Therefore, for myself, for my needs, not yours or anyone else's, I am putting off getting a scooter or motorized chair as long as I can, simply because I fear becoming weak and bedridden, and want to force myself to use my muscles so I can remain as independent, and as functional, as possible for as long as I possibly can. 

I don't want to go many places any longer because it takes way too much energy - even if I had a scooter, so hopping out of my car into a scooter to cruise long distances around a shopping mall, craft or music festival, etc., is not in my plans, but scooters could very well help other people do things like that, or other things that they want to do.

Paisley, you sound like my husband. He has chronic fatigue syndrome, and learned 20 years ago that physical activity means mental dysfunction. It also sounds like you may have myasthenia gravis. I hope you get tested for that, because it is treatable.

Getting a scooter does not cause your weakness, clearly.
Sharon

[slccom]

So, rather than use the mobility aid that would let you enjoy much more of your life, and life with your family, you will let pride keep you mostly home-bound?

I will never understand that reasoning. That is like refusing to use my hearing aids because they will make me dependent on being able to hear and understand others, including my family.

Just because your mother lost her strength after getting a wheelchair does not mean that the use of the chair caused the loss of strength. Bodies fail. It is inevitable. You may as well enjoy life as much as you can with the use of the marvelous assistive technology that we have available to us.

Sharon

[long time dry]

Did you know that there are lifts for putting scooters into and out of cars?  They can be attached to the car and then the lift will take care of the hard work for you.  There have been models that fit into trunks and models that simply mount on the back and swing in very close to the rear of the car for storage.  I think it depends on what sort of car you have.  Some older cars and current smaller ones don't have enough room or proper places to fasten the lifts, but many cars work well with lifts.

That might be something you can investigate if you decide you want a scooter.  I like the idea of renting one to try it and perhaps someone else can help you lift it during the rental period.  Then if you want to get one and a lift will work with your car, you can get a lift to go with your scooter.

[Skylar]

So, rather than use the mobility aid that would let you enjoy much more of your life, and life with your family, you will let pride keep you mostly home-bound?

I will never understand that reasoning. That is like refusing to use my hearing aids because they will make me dependent on being able to hear and understand others, including my family.

Just because your mother lost her strength after getting a wheelchair does not mean that the use of the chair caused the loss of strength. Bodies fail. It is inevitable. You may as well enjoy life as much as you can with the use of the marvelous assistive technology that we have available to us.

Sharon

Sharon, I understand the point you are making and I certainly agree with the logic that you shouldn't avoid technology (scooter/wheelchair) if it improves your quality of life.

There will come a time when I may need, use and enjoy them. But I think one should explore and exhaust all other options first.

This is why I suggested a walker that has the option of a seat and perhaps can be used as a wheelchair - and to keep walking and be active as much as possible - in other words use the seat as an emergency back up system, not go into a scooter which commits one to always be seated.

I guess it comes down to something inside each of us.

[anita]

I am being assessed for a scooter now.  My doctor wrote an Rx but it's a long process with Medicare...lots of red tape.  Trust me, I would never 'want' to use one, but have come to accept that if I hoped to have the ability to go to the store or get out of the house, I'd have to use one.  My autonomic neuropathy is so bad that I'm no longer able to maintain an upright position due to BP dropping. 

I have thought long and hard about the fact that I'll lose muscle strength the more I use it.  I don't want to be home-bound, so this is the best option.  Just because you use one doesn't mean you can't do exercises, etc to help maintain muscle mass.  There are many exercises to do while sitting.  It really all comes down to how motivated someone is to be as strong as they can.  I hope to use this to help me live longer by being more 'active' in other ways and I can do other exercises to keep strong.

As my son keeps telling me:  Improvise, adapt, and overcome...do everything you can to live and be happy.  If this includes using mobility devises, then this is what I'll do.

[mshistory]

I'm going to ask my doctor about getting a prescription for a wheelchair and a handicapped placard to use when I need it - and only when I need it. Yes, I am very fatigued like we all are, but that's not why I need it. My problem is the awful leg pain I get with my lupus.

Sometimes it's so severe I can't walk on my own (not very far anyway). As long as I stay on top of my pain meds, I can usually get around short distances or around a grocery store but by the end of our trip to Whole Foods this morning, I was hurting again ... and it wasn't just the sticker shock from our grocery total.