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littletsunshine 06-13-2009 02:27 AM

New to wheelchair shopping, help please
 
Im starting to have to face my limitations and realize there are times(not all the time but times) where its just not safe for me to walk anymore. Ive had a service dog to help with mobility(either with a harness or to help me up) for about 4 years now. I have widespread joint pain, with flares that are almost completely disabling. (I still dont have a diagnosis, been tested for autoimmune disorders for years with no solid dx) I would use a walker or cane or continue with a harness for my dog, but my hands wrists elbows and shoulders are getting very bad(had to take the highest dose of pain meds I have to type this, please forgive any fogginess or typos) During "flares" my joints literally lock up to the point where you cant force them to move, and the pain associated with trying to walk or move them is intense. Today my ankles locked up so bad I couldnt get down the 3 steps going out of my place.(Thanks goodness hubby was there to help)

Ok so here is kinda what Im looking for.
It needs to be really lite and collapsable so that it can fit into my car. The light part is necessary due to the fact that 2 friends that go out with me cant lift heavy things(I would say under 20 lbs) plus If i get the nerve to go out alone, my SD can be trained to pull it but I dont want to hurt her either. Im short 5ft 3 so something that will be size appropriate would be cool. Last but not least need a pad cause frankly when I hurt that bad, something to absorb the shock of bumps and such would be a blessing.

Sorry so long but thanks for looking. I hate giving into this idea but I dont want to be stuck in the house all summer. I think my hubby is relieved that Im looking into it cause he hates watching me hobble in pain everywhere. We are checking with our goodwill tomorrow to see if they have anything I could get from them in the meantime while looking for the right chair for me.

Kitty 06-13-2009 02:34 PM

First of all....welcome to NeuroTalk! :) I'm so sorry for your pain...and not having a diagnosis to go along with it. What have you been tested for?

I saw a lightweight chair at Rite Aid pharmacy today. There are also gel pads that you can purchase for wheelchair use. My Dad had to have one because he was in his chair all the time and the pressure on his backside could have caused sores. He said it was like sitting on an air mattress - apparently it was very comfortable.

If nothing else do a google search online for lightweight wheelchairs and see what it comes up with. Good luck!

littletsunshine 06-13-2009 08:51 PM

Thanks for the welcome :) Sorry this doesnt seem so social, just wasnt sure where to post this.

Lets see, I have been tested for sure for RA and Lupus as autoimmune disorders go. They also checked me for lyme at the begining. Im not really sure what the other tests were to be honest. My old family physician refused to refer me for the 1st 3 years...he said he thought he could treat it but just waited till an evil flare hit gave me steroids and narcotics and sent me home. The rhumetologist said since the tests came back negative that all I had was fibromyalgia... Though I have yet another lab slip in the car for another round of tests. The symptoms keep increasing and he seems not to care so, not sure what to do. We honestly dont have a lot of options here.(MT) short list of symptoms in case any of you out there have any ideas. Joint inflamation, joint pain, joint stifness, muscle weakness(new), fatigue, extremely dry skin, lips and eyes, even a small ammount of twitching in muscles in my legs. Ive had a list of unexplainable problems from sinus tachycardia, kidney swelling and stent placement, unexplained breathing problems and rashes that lasted months for no reason. Also from what Im told unlike fibro, during my pregnancy I was in complete remission(eded badly though IUGR and preeclampsia, micro preemie :( short 5 days on earth)

As for a chair, I am thinking of getting something that is going to last quite some time and that is going to make me as comfortable as possible during these flares. I was kinda hoping for suggestions from chair users as to what they have found in the form of comfort. :) I will definitly be looking into pads

Thanks sorry so long

Earl 06-15-2009 06:54 AM

Welcome, and let me say, I hope you have better days ahead.

I would say the most important thing about wheelchair shopping is NOT to get the retail generic versions of chairs. Many here may not agree with me but I have experience in this. My first chair was an IC (Institutional chair) like you find at the airport or hospitals. They are unhealthy and can harm you more than help. They have virtually no cushion, they are heavy and have no lumbar support.

If you are so prone to pain, go to your primary doctor, or neuro, and ask them to get you a script for 1) a wheelchair and 2) a seating clinic evaluation. They will measure you in every direction and find the chair for you.

My first custom fitted chair I got on 9/11/01 Yep, that fateful day. It was an Invacare Pro-T which I still have in my garage. I went from that to a power chair (my arms got too weak to use manual) my first power chair (PC) was a Pride Flash, and my second chair was an Pride Quantum 6000. The Q-6000 is the BEST chair for PC's. I don't much care for the Pro-T (mostly because it is heavy and I don't like the aluminum tubing.

My next chair will be a TiLite ZRA. It is an all titanium rigid chair.

Since you need something that folds, there are MANY chairs out there, but the most important thing is that it be fitted to you.

I also endorse Jay cushions. I use both the Jay Basic and the Jay Gel. Both excellent support for long term use.

So, I hope that helps.

eponabri 06-15-2009 07:25 AM

Hello, I'm new to this forum too. I was very glad to see this question, as I'm going to be in wheelchair in a couple of years myself. I spend 6 months in one in 1987 after a car accident. They said I'd never walk again and would probably have to have my leg amputated, but they were wrong on both counts. But now after 20 years my leg is breaking down and I'm having to use a cane occasionally. I know the wheel chair is in my near future. I kind of had my heart set on the one that climbed stairs, but I don't know if they make it anymore.

Anyway, I'm glad I found this group for a variety problems I have to deal with.

Kitt 06-15-2009 09:24 AM

Quote:

Originally Posted by eponabri (Post 523502)
Hello, I'm new to this forum too. I was very glad to see this question, as I'm going to be in wheelchair in a couple of years myself. I spend 6 months in one in 1987 after a car accident. They said I'd never walk again and would probably have to have my leg amputated, but they were wrong on both counts. But now after 20 years my leg is breaking down and I'm having to use a cane occasionally. I know the wheel chair is in my near future. I kind of had my heart set on the one that climbed stairs, but I don't know if they make it anymore.

Anyway, I'm glad I found this group for a variety problems I have to deal with.

There is the IBOT that climbs stairs. It sells for $20,000 to $25,000 the last I heard. There may be others.

kicker 06-15-2009 11:19 AM

I thought my insurance was great but DME limited to 3500 and chair I wanted was more, got supplier to knock off some on price, luckily could afford what I wanted and it does make a difference. Mine tilts, wasn't sure I'd use but found I do all the time. Found there is quite a difference in quality and had to "Put on my nasty pants" several times during procedure to get what is right for me (seat with type of cushion build in, foot rest) What the "expert" decided was different than what I really did best with. It was worse and took longer than buying a new car. Luckily stair climber scares me, can't afford anyway.

jprinz99 06-15-2009 08:32 PM

Get a script for a chair and a fitting w/seating eval. This is a bunch of measurments and ADL and medical issues wuestions so be prepared to answe them honestly. Go to a RESNA certified clinician or look for the letters ATP after htier name ( a type of certification) -they will get you the best chair for your needs. A good DME supplier most likely has a person who does nothing but insurance and self pay issues to get you the best DME you need at a price you can afford. They also have excellent contacts (usually) with Goodwill, PVA, various socieies etc to find charitable or loaner programs if finances are an issue.

I can tell you that the "stock" chairs some suppliers want to give you without asking anything but your height/weight are not going to be what you are going to 1) need or 2) be happy with.

You can also go to a reliable physitrist or PT/OT and they can reccomend a chair and seat. They will may also be able to give you some names of companies/people to look into DME-wise, based on thier experience and other patients feedback.

Also check out usatechguide for info on chairs. Caution: can be info overload if you do not know what type of chair you are looking for (manual chair come in types such as folding or rigid, lightweight, ultr lightweight, etc, etc)

kicker 07-06-2009 09:49 AM

Long term use wheelchair -
I have an inexpensive travel Go -Chair from Pride and a fairly expensive Invacare TDX-SP) for daily heavy duty use. I don't walk, I'm a serious wheelchair user. Between the two (different purposes granted) is like a cheap car versus a really good powerful one. My "'real" chair is quiet and HEAVY AND SOLID. It takes a lickin' and keeps on tickin' so to speak. Door frames sometimes get hit and I'm always in this thing, trying to cook in a regular kitchen and clean as well I can the rest of house. For awhile we had area rugs, gone now, a chair will rumple them up when you are chasing animals and animals ours brought in, not thinking and the powerful chair did better. This is my life now, I need really good ($$$$ but as Visa says "priceless".). Got a good built-in air and gel and foam seat with special inflate/deflate valves, made to my size and spects, seat tilts so my back and legs get weight taken off them, now I wish I'd gotten elevating seat so I could reach more. This can be a very important decision. And $$$. I am PPMS, I stay pretty much at a constant, the more expensive the chair, more tweaking to needs you get (found out things after I had it). Good luck.

kicker 07-06-2009 09:58 AM

[QUOTE=jprinz99;523829]a fitting w/seating eval. This is a bunch of measurments and ADL and medical issues wuestions so be prepared to answe them honestly. Go to a RESNA certified clinician or look for the letters ATP after htier name ( a type of certification) -they will get you the best chair for your needs.

In an ideal world. Mine had plenty initials after her name, but found out I knew me and my needs better. The guy who delivered and set me up was a great source of info, Hate owners of DME shop close by (think $$$ was their motivation for existing), found a great helpful guy a bit of a drive away. Don't rely on blind trust of "experts".

faithful 07-06-2009 03:52 PM

Good luck in your search
 
Quote:

Originally Posted by littletsunshine (Post 522787)
Im starting to have to face my limitations and realize there are times(not all the time but times) where its just not safe for me to walk anymore. Ive had a service dog to help with mobility(either with a harness or to help me up) for about 4 years now. I have widespread joint pain, with flares that are almost completely disabling. (I still dont have a diagnosis, been tested for autoimmune disorders for years with no solid dx) I would use a walker or cane or continue with a harness for my dog, but my hands wrists elbows and shoulders are getting very bad(had to take the highest dose of pain meds I have to type this, please forgive any fogginess or typos) During "flares" my joints literally lock up to the point where you cant force them to move, and the pain associated with trying to walk or move them is intense. Today my ankles locked up so bad I couldnt get down the 3 steps going out of my place.(Thanks goodness hubby was there to help)

Ok so here is kinda what Im looking for.
It needs to be really lite and collapsable so that it can fit into my car. The light part is necessary due to the fact that 2 friends that go out with me cant lift heavy things(I would say under 20 lbs) plus If i get the nerve to go out alone, my SD can be trained to pull it but I dont want to hurt her either. Im short 5ft 3 so something that will be size appropriate would be cool. Last but not least need a pad cause frankly when I hurt that bad, something to absorb the shock of bumps and such would be a blessing.

Sorry so long but thanks for looking. I hate giving into this idea but I dont want to be stuck in the house all summer. I think my hubby is relieved that Im looking into it cause he hates watching me hobble in pain everywhere. We are checking with our goodwill tomorrow to see if they have anything I could get from them in the meantime while looking for the right chair for me.

I do have a jet 3 chair although it's not collapsable. I live in NJ.


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