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 gloria
#928
This topic is for anything that you have found that helps you cope with OT.

There have been many posts about chairs and other "things" that are helping, but they often get pushed to the back of the forum list.

So, if you have already posted a suggestion in the other area of the forum or your have some new tips, it would be very helpful if you could repost your suggestions for "things" that you have and a little review of the item would be great. This would benefit anyone that is new to the forum to quickly find the skills and tools to cope.

I know that everyone will be very thankful for your ideas and suggestions.

thanks! Gloria
By MikeS
#932
Hi
I have purchased a light weight folding fishing seat with telescopic legs....But havent used it yet I was only diagnosed a couple of weeks ago...Im still into finding a wall to lean on .I tried a cane but found all it did was move the tremor to my arms as well.
I will use the seat Im sure but its going to take some getting used to .Fortunatley I dont get embarassed easily so I dont care what people think.
I have a certificate from my specialist in here in Spain that explains I have a chronic disabillty that means I cant stand in line
.....well I think that what it says as my Spanish isnt brilliant.. :D .....
Today I started my first lot of pills Gabapentina....(Spanish name).......and If this morning was anything to go by Im not going to like them.I woke up like a zombie and took about 2hrs to come round then I was fine.My dosage is 300mg for 3days then 600 then 900 then 1200.Im not sure I want to fill my self with more chemicals.
Anyway im rambling now....but it feels so good to know that Im part of a very exclusive club where the members are happy to listen and share
Thank you all so much
Mike
By Betty
#947
Hi Mike,

I wanted to comment on your statement regarding the use of a cane. I was diagnosed in 2003, after searching for approximately 12 years.

It was suggested I get a cane, but I found the same problem as you described; the tremors transfer from the legs/body to the arms. But....I was also told even though you don't find relief from your tremors, it DOES make others aware you have a problem and they are very helpful in opening doors, and will move out of your way when passing. I have great difficulty with my balance ~ as is the case with OT ~ and if someone should bump me, I would fall. I also have severe vertigo; which makes my balancing act a real challenge; but we all learn different ways which will work for us.

I have FINALLY gotten myself a cane, and people are more than willing to help me.

Regarding the Gabapentina....(Spanish name) ~ which is generic for Neurontin ~ I tried that one too and only took 150 mg at bedtime; I experienced the same problems you described; and the dosage was very low. I have tried it twice and both times found I am unable to tolerate it.

From what I have read, those who are able to tolerate it and can increase their dosage find it is most helpful. I wish you luck and just keep trying to find something which will work for you.

If I am not mistaken, I think I read you will be attending the meeting in Rochester. I look forward to meeting you and all the others who will be there. It is a very exciting time for all of us.

Betty 8)
By gloria
#1064
Helen Sanderson wrote:

Dear Gloria,

I thought that our members may be interested in knowing about Warm Pool Therapies that are usually available through the Arthritis Society. I have found the experience of gentle exercising in the warmth of the water to be both physically beneficial and therapeutic. To be engaged in standing exercises and to be free of tremors feels so good and liberating. I have attached The Bridgepoint Warm Pool Therapy Program, Toronto, Canada.

ABOUT OUR PROGRAM
This program is designed for people with arthritis or fibromyalgia or
for anyone in need of a gentle workout as part of a maintenance program.
Sessions consist of 45 minutes of gentle movement and exercises to help
improve or maintain joint flexibility and muscle strength, and to help
decrease joint pain and/or stiffness. This class is suitable for people
who are independently mobile. Our Aquatics Instructors are trained
volunteers (not therapists) who will lead you through the gentle
exercises and will encourage you to work at your own pace and within
your own limits. Our pool is chlorinated and is kept at 92 - 98° F.

Please can you put this on our site?
Thank you.
Helen
By Marianne
#1104
I have a "chair walker" that I take with me for short trips to the store. It helps to support me when I walk and when I have to sit, there is a seat with a back to it. This has helped me quite a bit, especially in stores that don't have the scooters. I live in NJ and only recently some of the retail stores and supermarkets have begun to have scooters available for their customers who could not otherwise get around without one. Unfortunately, there are those persons who have no problem walking who decide that they don't feel like walking so they take a scooter and use it. How I wish I could get around the way I used to and not have to use anything to support and get me around!

I hope that some of you look for the chair walker. I think it is much better than the cane that has a little seat attached to it. Walmart sells it as does Costco and I assume other places that sell canes and other helpful items (shower chairs, etc.)

Hope this suggestion helps you.
By Marianne
#1110
Not quite a product review but a suggestion: I recently got a small motorized scooter. I had been petitioning my health insurance company for a year, receiving 3 denials (saying that I should first try a wheelchair before they would (the committee that decides) consider my request for a motorized scooter. For the first few attempts I could only send letters written by my physician on my behalf. On the last attempt (before petioning the Board of Insurance) I was able to speak to the Committee via telephone in an attempt to convince them how debilitating this condition was; that I really had no control over it - it controlled me. I was given 10 minutes to do this. Upon completon of my "speech", the Committee told me that I would be contacted by telephone regarding their decision. I was elated to learn about one week after that the past denials had been overturned and that they would support my request for a motorized scooter. The insurance company paid 90% of the cost and I paid 10%. I've had my scooter since October of 2007 and just about 2 months ago, we had a lift installed on our SUV that actually lifts the scooter into the back of the truck and then lifts it out. It is like I have been given a "new lease on life". :D

Just as an aside, most automobile companies have a program where they will contribute to the cost of the lift. We found a company that installed a lift for us using the towing bar of the truck.
(P.S. - Most smaller scooters break down into several pieces if your automobile is not an SUV and can be put together at your destination)

I pursued the insurance company because my OT has gotten to the point where I cannot walk very far without having to sit somewhere. In the US, there are some retail stores that have a limited number of motorized scooters available to their customers, but not all stores have them. I have found that supermarkets, retail stores like Target, Walmart, Home Depot, Lowes have them but malls (except for one that's about 45 minutes away from me) do not.

I hope this information is helpful and informative to all of you.
By stella R
#1111
HI
i too have a motorized scotter and a walker.
my husband's insurance paid for it. i have not used the scotter very much.
WE have a small car. T HE scotter does come apart.
I hope to take it out more often this summer.
I cannot walk only a very very short distance without help.
I do believe in using anything that is available to us to help us get around.
My friends are so wonderful . Even though they don't understand what O.T. is they
are always there for me. I feel very lucky for that.
I would say to anyone who has this disease not to be afraid to be open about it.
After all that is how we get the word out to others.
I have had many calls from friends who know of someone with a tremor of sorts and
they ask me to talk with them. I am more then willing to help out where i can.
Take care all
stella
By Marianne
#1163
Just another thought that might help some of you cope with your OT. I have found that a bar/counter stool that revolves is a great help in the bathroom when attempting to do your ADL's (wash face, shave, put on make up). I've had a backless wooden one about 24 inches high for a while, but now find that I require something that has a back to it. I found one yesterday at a store (Bed Bath and Beyond) which is perfect. Didn't cost much, especially if you have one of those 20% OFF coupons (about $26). I don't know if these stores are located in Canada or whether you have similar stores.

I might even try to do some ironing using this chair.

Hope this idea might help some of you.

Kaylie
By stella R
#1164
HEY
Thanks Kaylie for that tip.
i too have a stool in the bathroom but that sounds like a better one.
It sure is nice that we can all share our ideas.
Regards
Stella
By gardenwoman
#1208
I have just seen an advertisement for a trolley with a fold down seat, more like a normal shopping trolley than the ones that are especially made for people with a disability. I wonder if anyone has tried this? its called "the out &about roller the trolley with seat" from http://www.homgar.com. It seems more like what I need and more easy to move about than the bigger ones with permanent seats. I am not able to review it because I havent tried it, neither can I recommend for the same reason.
By Harriet
#1220
Hi,

A shopping cart with a fold down seat seems like a great idea. I saw another one on the Active and Able website for $49 and will probably order it (to add to my collection of cane seats, sports seats etc.) I could not figure out how to create a link to the site, but it is easy to find through one of the search engines.

Harriet


hi harriet, here's the link, Active and Able is an interesting website, thanks for posting this - jeff (admin)
link to cart
By stella R
#1221
HI
Thanks for that website Harriet and Jeff.
I found some items on their for my vision impared son.
It's wonderful how people help each other on this site
take care,
stella
By George Allen
#1281
I have a cane that opens into a 3-leg stool. I got mine from Shopper Drug Mart medical supply division in London Ontario.

I notice that stamped on the under side is the fact that it was manufactured in Texas. So, if you have access to a medical supply store, they can probably order one for you.

It is called Handi Seat.

Check out the following web site.

http://qualityintser.com/SportandHandiSeat.html
By jolarson
#1295
I use a cane sling seat when I am out and there isn't a cart to hang on to. I also use it around the house if there isn't a stool or chair nearby. I have friends who have various walking and standing problems due to difficulties other than POT and I have given a couple of mine to them. They are so grateful. This gives me more security while my legs are shaking and trying to sit down quickly. I bought it at this web site. http://www.cwimedical.com/cane-sling.html
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