Choosing A New Wheelchair

[Rachel]

I am in the process of getting a new wheelchair. I currently have a lightweight folding wheelchair, and I am considering getting an ultralightweight rigid wheelchair this time. My insurance only pays for a new wheelchair every 5 years, so once I get a new chair I'm stuck with it for a while. I really want to make sure that I get just what I need. Do any of you have a rigid wheelchair? If so, I'd like to hear what you like/don't like about it.

First, I have a question for any of you who use a wheelchair.

1. How much space is there between the widest part of your hips/legs and the side of the seat? Do you get a chair that is as narrow as possible, or do you get one that allows a bit of wiggle room?

Currently I have an extra inch and a half on each side of my legs before the edge of the seat. Then there is another inch or so of space between my seat and the wheel. My OT told me that she thought I could go down an inch or two on my wheelchair size. Another person said that he would recommend the same width seat. I don't want to feel squished in my chair, but if I could go a bit smaller that would make it easier to get through tight spaces, in and out of doctor's offices, etc.

Now for more questions:

2. Do you have swingaway armrests? Are they comfortable to rest your arms on?

3. Do you have an angle adjustable back rest or a folding back rest? What are the pros/cons to this?

4. Do you have swing away foot rests? Or do you have a one piece foot board?

5. If you have a foot boad, is it tucked in under the chair a little? If so, is it comfortable? Does it make blood pooling worse?

6. If you have swingaway armrests (or no armrests), do you have clothing protectors between the seat and the wheel? Do these work well enough in the winter to keep snow, slush, and mud off of your clothes?

7. What is the brand and style of wheelchair that you have? Overall, have you been happy with it?

Sorry for asking so many questions! I like to be well informed. Thanks for any help you can offer!

Rachel

[corina]

Rachel, as I struggled in stores (narrow pathways) I have one that fits me without leaving space. I have a special cushion to sit on and my feet are on swingaway footrests. I'd prefer a footboard (where you can stand on to get out of it) as you can keep your feet together which I prefer (I had that in my power chair so I could see the difference). Also I found it important to be able to have my feet up (I think I always used that feature as it gave me more sitting time!) and the angle of the back rest can be adjusted (which I also use)

My wheelchair is a Quickie (dark purple!) and though not perfect I LOVE(D) it!!!

Hope this helps. Good luck on deciding, a comfy wheelchair is SO important!!!

BTW my powerchair was the top of the bill, really narrow (for a powerchair) and everything adjustable by just pushing a button. It gave me the opportunity to go out on my own or go out with my kids/husband (while they were biking or walking). If ever you need any info on a powerchair do let me know!

[HopeSprings]

Rachel & Corina - can I ask what symptoms cause you to need the use of a wheelchair? Is it tachycardia or weakness or....? What form of dysautonomia do you have, Rachel? I know we all have different levels of disability, but I didn't realize some us were in wheelchairs. Hope you find a good one that works for you!

[corina]

Naomi, since octreotide I'm usually not in a wheelchair (unless the injection isn't made properly and doesn't work I'll go downhill within just a few days). I couldn't stand for long (not even 3 minutes), I walked like drunk (could only do some walking at home, get a cup of coffeeie), sitting was a problem as well, sitting for too long would cause my bp to lower (not fainting but too low to stay seated). I was shaky as well. Also whenever I sat too long (20 minutes) I started yawning like mad and feeling very weak and needed to lay down to stop the yawning. It would take about an hour to recover (and on bad days it would take 1 to 3 days to recover). I think there were a few more issues which I forgot

[HopeSprings]

Corina - I feel drunk when I'm walking too. It's an awful feeling. That's amazing the Octreotide got you (mostly) out of a wheelchair. I think I would be scared to have an injection because then you're stuck with side effects (if there are any) for weeks until the medicine wears off. Then again if it worked- well, that would be good!

[Rachel]

Naomi, I have to use a wheelchair because of muscle weakness and insufficient energy. I am able to walk around my small, one story home on most days, although I do often use a walker. I use a wheelchair when I leave my home because I am unable to walk a significant distance or stand in line. I'm hoping to be able to use my new wheelchair in the kitchen to make it easier/possible for me to get food. The doctors aren't sure what type of dysautonomia I have. I was diagnosed with POTS in the past, but tachycardia is no longer a problem for me, and my doctors have agreed that POTS isn't an accurate diagnosis. It appears that my dysautonomia is due to a mitochondrial disease, and I'm in the process of pursuing a diagnosis for this.

Corina, thanks for the information! It is helpful to know that your wheelchair is a snug fit but still comfortable. Do you find that the snug fit makes it messier for you in the winter? Do you get snow, ice, or mud on your clothes from the wheels being so close to you? Or do you have wheel guards to protect your clothes?

[issie]

I don't have a custom wheel chair - but, when I got mine - they told me there was not much difference in the weight of the regular wheelchair and the light one - the difference is in the type of fabric that the wheelchair is made out of. They said that the light one ---the fabric does not hold up as well as the one that is not light. I didn't realize this was the only difference. So, I got the heavier one. Mine is not a snug fit - but has a little wiggle room. I have had a snug fit and did not like it. If it's too snug and you push against the sides too tight - it pushes into the wheels and that heats the metal up and it burns you. I also have the swing away foot rest and will adjust to whatever level you want them to be ---I really like that feature. My arms are stablized and I like that -because I have strength weakness too and it was good that the arms are very firm to be able to push up on them and not break them ---as they take most of our weight when our legs are weak.

I'm no longer in a chair ----but, for sure I have one. And if I go any where that requires very much walking ----I have my chair. I'm not good for very long and the leg weakness kicks in and then I can't pick my feet up and have to swing from the hip to walk. My doc does think there is a mito issue involved ---but, says it is hard to detect --as testing still isn't as good as he thinks it should be.

Let us know what you decide on. Hope for you to get more answers.

Issie

[arizona girl]

Hi Rachel,

Sorry can't give any advice on the wheelchair. Just wanted to say I'm happy to hear your looking into the cause of your muscle weakness. I read your cranberry tea time a while back and remembered thinking that it was more the just dysautonomia. I hope the mitochrondrial investigation points you to something treatable.

I was just wondering if they had ruled out all the autoimmune neuromuscular diseases, because your symptoms could also fit there too. When I was getting my ivig infusions at the infusion clinic there were other patients that had muscle weakness similar to your description. They had different diagnoses even though similar symptoms, some were ones like ms, mysthenia gravis, polyneuropathies, cdip, derma and polymyositis, stiff persons syndrome and even autoimmune thyroid disease called graves. Hopefully you already know about these and they already ruled them out.

I too have muscle weakness/fatigue in my quads and upper arms and have tended to avoid activities that fatigue them. Standing in line is always just plain painful and I avoid like the plague. If I avoid those activities that aggravate these symptoms, I can sometimes pretend that I'm fine, I just have to stay in the box. So, it can be unsettling when I'm forced to go out of it and realize I'm not as good as I thought.

I like to think of myself as the Queen of compensation and avoidance. When I'm her things are good!

[corina]

Rachel, I forgot to mention, I fitted the chair wearing warm clothes as I always was so cold, so wearing warm underclothes, a warm woolen sweater and thick jacket. In winter I wore snow boots (which are okay to get dirty!) and when needed a cloth that has fake fur inside and is water resistant whcih keeps me warm and dry! It's an specially made item (extra money but helps a LOT). I think my clothes got dirty now and then but the joy of being outside was much more important to me!!! I don't have wheel guards so cant say anyting about that!

Naomi, I started the octreodtide subcutanous as to not be in danger when side effects would kick in. I was on that for 3 months and then got the LAR. Right now I'm in the proces of trying to get an insuline pump which can be filled with the subcutane stuff as doctors have been messing up preparing my LAR shots 3 times over the past 4 or 5 months. That means that (within days) I'm back in my chair/bed.

Also the subcutane stuff works "sharper" and I think that when I'm the one in control things will become better.

[Little Miss Bounce]

Rachel - I have an electric wheelchair not a manual but I would definitely recommend elevating footrests and a reclining backrest, as they help my pots symptoms a lot! I also have some space next to me which I find quite helpful as when I elevate the footrests and recline the back all the way I have enough room to lay (sort of!) on my side (if stationary). I find this helps my pots and definitely helps my headache, although it's no where near as good as actually lying down flat! My wheelchair is quite big though and I do sometimes struggle to fit through places & in some disabled toilets.

Corina - I'd love to know more about your experiences with octreotide, if you wouldn't mind sharing! I'm due to try octreotide in hospital next week, & would be really grateful to have some advice about dosages, side effects, what symptoms it helps with, how long it takes to work, how long any benefits last, & if there are any questions I should ask, etc. Sorry I have so many questions, I just prefer to know what to expect! Many thanks x x x

[corina]

Little miss, I'll send you a pm tomorrow (too tired right now!) I have an article on octreotide in pots and antoher where it's used in another disease but the latter article explains side effects if I remember well!. In case I forget (I have bad memory) feel free to pm me and I will def come back to you!

[ladyt]

Hi

I have difrent types of wheelchairs. My Old manuell chair was a heavyer type, Whit higher back and wide in the Seat. My new one ( well Its been 5 years now) is snugger and ust to the lower back. It actually alot more comfy and easyer. Its a rigid frame, the wheeling goes of and the back can push to the Seat.

I have one footboard, put Its not tukt under. Its actually comfy to. But ofcourse i wish Somthimes i could elevate my leggs. I have a panthera chair.

My wheels on it are a modifid type Whit a bigg comfy ring to make it easyer to handle. The old one i could not wheel my self. This one i can , that is i use it at stores and malls mostly. But also in town ( Need more help).

I have an out door chair to, where i can raise my legs , tilt , and lower the back.

Its late and my brain is litle off tilt. So This is the best help i can give today:)

[Rachel]

Thanks for the feedback everyone! I currently have a wheelchair with elevating legrests, and I plan on keeping it for occasional use. The problem with it is that it is too heavy for me to wheel by myself for more than a minute on a good day. The elevating leg rests are helpful, but not as helpful as they used to be. I can't sit up in my wheelchair for an extended period of time, so I have to lie down on the floor or in a recliner. Mostly the elevating leg rests just get in the way now, and they make it hard to get in and out of doctor's offices, stores, etc. I do want to keep this old chair, though, for the occasional situation in which it would be helpful. I hope to one day go to the zoo with my family, and the elevating leg rests will be beneficial then.

I think I'm going to get an ultralightweight rigid frame with swingaway leg rests. This will be helpful for me to use in my kitchen. I'll take the leg rests off while inside, that way I can use both my arms and legs to move my chair around the kitchen.

I think I will go just one inch smaller on my wheelchair width. I'm still debating about what armrests to choose.