This is a forum for "things"- cane/chairs, books, specialized luggage.... anything that has helped, and what hasn't. Add your own tips and reviews.

Moderator: gloria

By MikeS
#1122
Hi Everyone
I am wondering how many of you are using wheelchairs? Not just for airports but shopping etc where you have to keep stopping and starting.
The whole shopping experience is becoming exausting for me and even finding somewhere to sit or lean for a few minutes is not helping anymore.
I really dont want to use one as pyschologically it feels as I am giving in to the OT.Any tips please?
Regards
Mike
By Chris
#1123
Hi Mike
I am seriously thinking of getting a wheelchair. I too find shopping quite exhausting especially when stores don't have a power cart available. I really miss not being able to spend time looking at things. I also think a wheelchair will be handy for social events such as receptions, big concerts and home shows, etc. I find I tend not to attend these events very often anymore. My husband and I have talked quite a bit about this and I guess this is the next step to having a somewhat normal life in public. I figure if we are going to have to put up with these darn tremors we may as well have some fun and be comfortable at the same time.
Keep in touch
Chris :D
By gloria
#1124
Hi! Chris and Mike:
Yes, the whole idea is to adapt to whatever and whenever you feel the need. Here's another option to consider. It is called a rollator (walker with a seat) by the company below. The advantage is that you can go by yourself anywhere and it is not as big as a wheelchair. The company is called Drive and it is located here in the US but if you go into their web site and see the pictures of their rollator perhaps you can find something similar in your location if you can not order directly from them. www.drivemedical.com click on rollator , they have a number of models.

Keep me posted, your friend from New Jersey, Gloria
By Chris
#1125
Hi Gloria
Thanks for the information. I have tried a walker similar to the one on the website.....it is okay for shopping but I find my tremor kicks in unless I walk quickly which is hard to do in some stores and at events. I also found when I was attending a social function it was very hard to hold a glass of wine and move around.....mine didn't move when seated on it so I actually found it a bit annoying. I eventually left it against a wall and went to sit on it when need be. At least I had somewhere to sit. :) I was just renting it to see how I liked it and decided it really wasn't for me.
Thanks again
Chris
By Joan
#1126
Hi Mike, Chris & Gloria.
I too am thinking about the next step. I am still using my little folding chair and that works for some places. I look longingly at the walkers with wheels, seat and a basket sometimes. I tried one out at Costco but found I only needed it to sit on, I dont need it to walk round the store, I lean on their buggies. BUT this week I had a cold and was very shaky. I had to go to quite a few stores and it was next to impossible, I just had to leave. I'm not sure I could handle a scooter by myself. My husband is always willing to help but sometimes I like to go shopping on my own. Like Chris, I find social functions pretty hard. We live in a townhouse complex and all our functions are smorgasbords. No way I can go round a table in a lineup and balance a plate at the same time. Sometimes I wait till everyone is served and then just take one or two items, I've learned to eat before I go .
I'm glad you brought this subject up.
Thanks
Joan in rainy British columbia.
By MikeS
#1127
Hi
Just to add that over the last two weeks I have attended two big social functions and have found the reception time most distressing and frustrating .They are the first I have been to for over a year and I did not realise how much my OT had progressed .This was another reason I was thinking of a wheel chair I found it impossible to mingle and had to sit and wait for people to come to me of course the dinner was fine because we were all seated.It seems to me that we all lose the abilty to do the things that come natural to most.Trying to explain becomes extremly boring to people that are in your company and have heard it 2 or 3 times already. So it seems that a wheelchair as much as I hate to admit it may be the answer...lol now I know why the depression sets in.Can anybody tell me does it take over from the anger or do they run together? :D

Regards
Mike :?
By Betty
#1129
Hello to all....

Regarding wheelchairs; I have finally relented and do request one when flying, but I have not given in at this point, to use one all the time. However; it has limited my ability to socialize; so I do as many others ~ find a chair and wait until people come to me. Most of your friends will see you and come sit and visit.

Gloria, thanks for the link for the rollator, I think it would be a great help for sitting when there is no chair available, but I have tried a walker and the pressure I put on the walker causes my tremors to transfer from my legs to my arms and upper body ~ so I just use a cart when shopping and try to keep the tremors under control as much as possible.

Chris, I think this is what you were describing, unless one can walk quickly, the tremors transfer to the upper body.

Joan, you sound like me ~ my husband tries to get me to use one of the electric scooters found at most stores; but I have yet to try one. I am fearful I might just run someone down! Soooo, I continue to shimmy and shake through the store.

As most have said, trying to get through a social event and when food is served buffet style; it is next to impossible to try to balance a plate and ones' self. We really do our own special balancing act! And Joan....you could send some of that rain down to FL ~ we are in a drought situation!

Mike, back to you....I am so sorry you are experiencing such difficulties and can see your OT is progressing. When we met in Rochester, I thought you seemed to be doing quite well. You did say you could stand a bit longer when you shifted from one foot to another; I guess this isn't working for you now. Did you go off all your medications? You had mentioned you thought you might since they made you less sharp than you wanted to be.

If you feel a wheelchair would help you; then you should certainly consider one ~ as should everyone else who is having difficulty getting around. You mentioned depression and anger; I think most have gone through many emotional stages after having been disgnoised with OT.

With me, at first it was ~ well, now I have a name for what I have ~ then as time went by, it was the realization of how OT impacts ones life. Yes, there is some anger when we can no longer do the things we have always done and taken for granted; but anger takes a lot of energy, and we need that energy to do our balancing act; try to let that go. Perhaps we do experience a little sadness or depression because our lives have become compromised ~ but don't dwell on that; for this too shall pass! Try to accept the cards you have been dealt (you will understand this better than most LOL), and play that hand the best you can. I know things will get better for you; we all go through rough times and need one another to help us; that's what makes this site such a wonderful, helpful place.

Try to stay positive, and remember ~ one step at the time.

Betty 8)
By Chris
#1133
Hi everyone
Thanks for being so positive Betty....this site is really a wonderful thing as we can feel free to express how we feel. Mike I think getting a wheelchair is not giving in but moving on to the next stage in our life. We are all still young enough to enjoy ourselves and if a wheelchair will help us then so be it.......enjoy the things that we used to do before. People will probably be a lot more welcoming and take more notice of you if you are in a wheelchair rather than sitting on the sidelines waiting for people to come to you. I am sure it will open up a whole new world again for you.
Hang in there Mike and live a good life. I wish I could have attended the meeting in April....I would have liked to have met you and everyone else. Maybe next time as long as it isn't in April.
Chris :)
By Betty
#1135
Hi Chris,

I know you wanted to attend the meeting in Rochester; but prior commitments prevented you from attending this year. I do think things went so well; there will surely be another in the future, and hopefully more people will be able to attend. It was a wonderful experience and especially gratifying to meet others with OT; and making new friends. The comfort zone was unbelievable.

You made some excellent points regarding using a wheelchair; too many of us don't want to give in, but if it will improve our life and allow us to do more things ~ we should consider it.

Thanks,

Betty 8)
By norak
#1162
7/2/08

Hi,

I got a prescription from my neurologist for a wheeled walker with a seat. Medicare paid for a basic, aluminum one and I upgraded, paid about $60 extra for a great, black vinyl walker that folds up to go in the car. Got it at a medical supply store. It has a large pouch under the seat where I can put my purse or purchases before checking out.
Noni
By Marianne
#1224
Hi Mike: My OT has progressed to a point where I can no longer stand for more than a few seconds without finding a place to sit. Until this time I resisted using the motorized scooters at retail stores, but now since I can no longer browse the store, if the retail store provides scooters (some US stores actually have them), I no longer resist the need to have one. The only other choice would be for me to stay at home.

I do have a rollator for quick trips but now find if I'm browsing in a store find myself sitting in it more than wheeling around, so it's becoming sort of useless for me. For the last 2 years I have been petitioning my health insurance (with the help of my neurologist) to have them pay for a small motorized scooter which I can use at home and also use when I decide to go out. Finally after my third attempt (and a brief 10 minute explanation of my condition to the committee of what my life is like with OT) they overturned the denials in October of last year and finally paid for 90% of a motorized scooter for me. I paid the remaining 10% which was under $200. In addition, since we have an SUV (not a large one), we found out that most of the US car companies have a program where they reimburse you $1,000 if you want to install a hoist in your auto so that you can take the scooter with you. I got my scooter in October 2007 and we installed the hoist shortly after. I am so happy that I pursued the motorized scooter with the insurance company and didn't give up. And now I am able to use the scooter both at home and when I go out. For those of you who feel you can no longer get around walking or your difficulties are getting worse standing, I would strongly recommend that you get after your insurance companies. And if they deny you, keep on pursuing it

I try to walk around the house so that my legs get some exercise and the scooter is used mostly for outings.

I hope that my information will give those of you who feel you need additional assistance getting around the impetus to go to your insurance companies. Be sure you have the backing of your neurologist. They are the ones that write the letters to the insurance company, explaining your condition, etc.

Let me hear from those of you who decide to try this route.

Take care, :)

Kaylie
By MikeS
#1226
Hi Kaylie
Good for you ! Insurance companies are notorious for just saying no to everything or looking for a clue not to pay.The trouble with our disorder is that its not on any 'list'.It takes a fighting spirit to take them on and to win must give you such a sense of achievment.
Keep smiling
Regards
Mike
:D
By sharonmathews
#1669
Whenever I fly I use a wheelchair. I have a nice walker with a seat and basket that a friend purchased for me. I have a problem with the walker because I also have back problems, which I had surgery for in 2007. The surgery did not help even though they put rods and screws. Picking up the walker and taking it out of the vehicle is a huge problem for me. Leaves me with terrible pain from trying to lift the walker or the wheelchair. If no one is with me to help I can not go anywhere.
When I get the tremors going taking the time to push the brakes on the walker and then get turned around makes my legs lock up and then I have trouble trying to sit down. I mostly stay home unless someone is with me. It is too hard and very frightening.
How I wish I had a scooter for outings and all social activities. I have stopped anything social except going to church. I have a terrible time getting from the car to the seat and back again because I can not get through the crowd of people. I usually stay seated at the end till I see the coast is clear to sail through straight to the car.
People do not understand my condition and think I am unsocial. That is total not the turth. Just can't walk around and talk with friends.
By Marianne
#1671
Hi Sharon: I am fortunate enough to have a small scooter (battery operated). I've had it almost 2 years now and use it just for outings when I know there won't be any scooters. Target and Walmart do have them as do some of the local supermarkets here in NJ. My scooter is a Revo. With the help of my neurologist, who wrote a letter of support to the insurance company and some "fighting" on my part (they denied the request the first 2 times) but I did not give up. I petitioned the insurance company 3 times until they reversed their decision. The insurance company paid 90% of the cost and I only had to pay 10%. The scooter comes apart if one so wished to get it into the trunk of a car. However, my husband discovered that several car manufacturers have a program in which they give you $1000 towards the cost of a lift. Since we have an SUV, we looked into the cost of a lift that could lift the entire scooter into the back of the SUV. We found a retailer that installed a lift for us. The only thing we have to do is to bring the back of the scooter down so that it can fit into the SUV. I have a walker with a seat, but that just gives me back problems. The scooter is a Godsend, especially if I'm walking the mall.

I do not use the scooter indoors since I'm able to get around at home (having several stools in strategic places - bathroom, kitchen). I'm never too far away from some kind of chair. You may want to look into this if you think it might fit your needs.

Stay well
By jank617
#1913
jank i have read all of your e-mails about the wheelchairs and i think if it comes to something like that for me i think i would try for the scooter that you can use inside and take with you too which is giving you a double deal without so many other things some of the stores like Walgreens advertise some of these things but i have never checked into them i do know some of the light weight ones you will get no help to be paid for why i don't know just what i was told. so good luck to all of you on your deciding what way to go i know at some point i will be there too but i am fighting to keep walking even with my cane and the next step i guess would be a walker so have to see what each day brings and just keep going the best we can best to all and keep fighting this .
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