• Anonymous
      July 27, 2008 at 9:14 pm

      Hi All: As many of you know I am in a wheelchair though I can walk for short periods. The less I walk the less pain and fatigue and discomfort I have, but I am thinking of getting a scooter so I can get outside by myself more and perhaps do more things on my own that it is hard to do in a manual wheelchair. I don’t want an electric wheelchair yet as it is so costly and I would need a van as well. The scooters are not cheap so I was wondering if any of you in wheelchairs or having trouble walking use scooters and if so what you can tell me-when you use them and how they work for you. Thanks for any help. Jeff

    • Anonymous
      July 27, 2008 at 11:04 pm

      Good question Jeff. I’m considering either a scooter or a segway myself.:)

    • Anonymous
      July 28, 2008 at 12:18 am

      I use a scooter and think that it is really beneficial. I use it at work mainly. I could not use a manual wheelchair because this takes a lot of upper body strength which I do not have. My insurance actually paid for the scooter after several appeals and I was seen by a rehabilitation “wheelchair clinic” to document the need. The one I have is more “portable” than some–it comes apart into four pieces. The total scooter weighs about 105 pounds and when separated, the largerst piece still weighs about 35 pounds which is hard for me, but I can put the scooter in my Honda and take it with me when I need to go out somewhere. I found out that most insurance companies use Medicare rules for approval of a scooter and that you have to say that you are going to use it in your home–assuming you are disabled or retired. My home is two story with a small downstairs–not too useful for a scooter. I refused to lie and said that I was going to use it at work and I think this was part of the reason that it took several appeals. I argued that I needed it to do my job since I work at a very large place and have to go places in the building that are too far for me to walk. My suggestion is to document how far you can walk, emphasize to them (although you would hope they would know) that GBS/CIDP is not like having a person with strong arms and weak legs, but it affects both arms and legs, that it is not that you cannot walk, but rather that you are really limited on how far you can walk, and as well, that walking has risks–falling, excess fatigue that worsens pain requiring more pain medications, etc. The people at the wheelchair clinic said really to emphasize safety as much as possible and why having a scooter might result in less medical problems/costs. They said be sure to tell about the fact that when I am tired, I am more ataxic and have fallen.
      I have seen advertisements for as low as about $600 for a scooter. I doubt this is the take-apart kind. The home health care company said that the scooter I got cost a lot more, but if you will have to pay for it or medicare/medicaid pay for it, know that there are ones out there for less and search the internet or shop around. Also know that scooters come in sizes–I have a larger one because I am tall. Some people need a different one because they weigh more than 250 pounds. They also come in three wheel and four wheel varieties.
      i rented a scooter to try it out and during the process of applying and appealing for it. Some companies will apply the rent toward the cost if you ask them.
      Regarding the Segway, the problems with it are that you have to stand up to ride it and it would be hard for me to do so for long, you cannot really carry anything on it, and personally I would worry about people taking it (permanently or temporarily for a ride) at work when I got off it to work. It is so novel and cool. I know it has a great stablizer system, but I would want to try it to see if I could balance okay on it without falling off!!!
      FYI, there is a really cool wheelchair based on the same technology as the Segway–to stablize and balance. It allows one to go up or down stairs, and also to roll on two wheels with the seat raised enough to talk eye to eye to people. I do not remember its name, but I was really impressed and if I won the lottery tomorrow and choose to get an power wheelchair, that was what I might get. In the meantime, I scoot around on my electric sccoter.
      WithHope for a cure of these diseases.

    • Anonymous
      July 28, 2008 at 4:52 am

      That’s the IBOT – it costs a fortune but honestly you really couldn’t ask for much more!


      If I ever win the lottery it’s on my list of first things to buy… you have to be screened to be sure you can use it and you and a partner have to go through a training class but this thing is 4-wheel drive, goes up stairs and can elevate you to roll along the same height as everybody else – no more aching neck!

    • Anonymous
      July 28, 2008 at 9:20 am

      I have thought about getting a scooter too. I still don’t have the stamina to walk long distances. Especially in public places like theaters and museums and the zoo. I go to Walmart or Target and they have the scooters available to use. They have the basket infront and are low enough for me to get on them. I see some of the chair type scooters seem really high to me. I have gone to our K Mart and they only have one scooter and it is not always there for my use. I feel guilty also using it incase there is someone that would need it more than I do. I have cut shopping trips down to avoid getting too tired. I would like to see more stores have benches placed around them for when I do feel tired I can rest. They have made some of these super stores so large that it is like going to an exercise class just to get something that is a necessity. I did buy myself a wheel chair so incase we do get invited to an event or place where we can not park right near the location my husband has a way to come get me and take me back to the car. I have not used it in public yet. Have not had that occasion arise, but I can tell you just having piece of mind that it is available has given me freedom knowing that we would not have to call for professional assistance. The people with GBS and CIDP need to recognize that we do have to pace ourselves daily. Each day is a different day. I am always thinking how I can conserve energy. I sometimes avoid the steps and walk out the door and around the house to the back door. Or from the car I walk up thru the yard and to the door to avoid those steps. you would think I have to climb a mountain doing the steps. But for independance and safety I would recommend that you check into getting another form of transporations that suits your needs! Happy traveling! 😎

    • Anonymous
      July 28, 2008 at 6:41 pm

      Hi All: I have done some research and it certainly sounds good to me. My insurance won’t cover it because I can walk from room to room in my house but the doc wrote me a script for it which means there is no sales tax which saves a nice little sum. I can get a little one that can be put in the car for $1200.00 which I can afford as I was thinking of getting another car instead-cheaper than a car! I will be able to ride it to work and back and around the lake near by etc. as well as into movies and libraries, which means a lot to me as I can do things without having to drag my wife along to push the wheelchair. My arm strengh is just not good enough to wheel around for more than a few minutes so I am excited about the scooter. The price goes all the way up to $4000.00 for types you need a lift to get into your car, but the simple ones are just a little slower and the battery a little smaller. I will try one out this week and let you all know how it goes. The idea of being free enough to go around my neighborhood and down to the store by myself is liberating. I think I have been depressed by feeling so home bound lately. Thanks all for your ideas and I will let you know what my experience is like. Jeff

    • Anonymous
      July 29, 2008 at 10:53 am

      My brother-in-law actually owns a company that helps people just like us. He will work with your insurance company for you and he has a lot of different options from scooters to power wheel chairs. Here is a link to his website [url][/url] He would be more than happy to help anyone that wants/needs more mobility.

    • Anonymous
      August 1, 2008 at 9:59 pm

      Well I bought a little scooter that breaks apart so it can fit in my car. I love it. I don’t drive much so we have only one car and when my wife went to work for the day today I went for “walk” and spent over an hour outside and then went to the store and bought a few things. It felt like freedom and I no longer feel trapped in my home. I can ride to work as well and get to the main areas of our town, like the movie and the grocery store. It feels great and, I must admit, it is fun driving along at 4mph. So it seems like the right decision for me. Jeff

    • Anonymous
      August 1, 2008 at 11:40 pm

      Totally awesome Jeff. A bit of freedom, no doubt! Enjoy and let it fly:D