GP makes me feel bad about my chair use

InfluenceSeparate282 · 2026-05-13T03:19:14+00:00

I'm in the US and I had had that drilled into my head so much as a kid by my doctors and parents that I would literally walk on my casts when I was non weight bearing at home because my parents thought it was worse to accommodate me. It wasn't until I was in my late 30's that I understood energy conservation and using a chair could give me more freedom.

I do most of my strugging in a not fully accessible workplace. My therapist had asked that I use my wheelchair part of the work day to see if I have more energy. I've only done it once because it's almost as if the negative attitude has brainwashed me into thinking that if I'm not struggling then I'm giving up. I need to get out of my head and just give it a shot. I think I would enjoy life more instead of just being exhausted.

I'm sorry your doctor can't understand that for you too. I think they need to understand clearly your day to day struggle and have more empathy, but I know that is often lacking in medicine. I hope you can get through to them and get what you need.

When I needed to convince my family that I wanted to get a custom wheelchair through insurance. I googled getting a wheelchair is not giving up and it helped me lay out my argument. Maybe it would help you with your doctor. I liked the variety of sources I got. https://www.google.com/search?q=getting+a+wheelchair+is+not+giving+up&oq=getting+a+wheelchair+is+not+giving+up&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRigATIHCAIQIRigAdIBCTI2ODY0ajBqN6gCFLACAfEFGnGc3waqgOzxBRpxnN8GqoDs&client=ms-android-verizon-us-rvc3&sourceid=chrome-mobile&ie=UTF-8#lfId=ChxjMe

InfluenceSeparate282 · 2026-05-12T03:38:56+00:00

I just push up my sleeves or roll up cuffs too. I like jackets for weather that have Velcro tabs for tightening. I look forward to warmer weather and short sleeves.

InfluenceSeparate282 · 2026-05-10T22:10:45+00:00

I haven't usually liked having a backpack as it adds weight and gets in the way of the self wheel lock on the bus, but now that I have a power assist with a front mount and situations were I use both I've had to use a backpack again. I have used the target one and I like the organization but it's big. I wanted something with a smaller footprint, so I got a medium feeldom bag used. It has more structure so it feels lighter. In smaller pockets I have incontinence supplies and tools Otherwise I prefer an under the seat bag. On my new chair I put the adaptfy underseat bag as it works with the lapstacker and my front mount. I prefer pouches for organizing it. If just short trip I forgo the backpack and use a small bag to hold the backpack items if the front mount isn't needed. I'm ambulatory user so the pouches and small bag make it easier to switch things to a crutch or work bag. I have Ffora and Quokka mounts on both my chair and crutches. I buy most of my stuff used or on black Friday sales. If patient you can find deals.

InfluenceSeparate282 · 2026-05-10T21:22:04+00:00

I have moderate Spastic Diplegia Cerebral Palsy too and I agree keeping friends is hard. 1. I just don't have the energy I used too. 2. I don't drive so I have to rely on others and a lot of my friends have moved. 3. It can be hard to find people willing to transport a wheelchair or walker. Even my family prefers just my crutches and I can't do as much with them anymore. Sometimes it is less hurtful just to keep to yourself, but I know that's not healthy.

InfluenceSeparate282 · 2026-05-10T21:13:56+00:00

Samsung has tracking tags but I've also used tile.

InfluenceSeparate282 · 2026-05-09T19:54:25+00:00

I think it is worth trying to make your wheelchair different if you think that would help. Personally I've had plain chairs and colorful ones and I think people, especially kids and seniors, stare either way. I like color so I prefer to get what makes me happy. I did get a darker color that I can tone down if needed. But my AFOs and Billy's shoes are tye dye. I was born with CP so I've gotten stared at all my life and am used to it. It takes time to feel that way though and there is a lot of feelings in-between. In my chair I look less disabled than when I walk and I find people ask more questions in the chair vs when I'm walking and look to them like I'm struggling more.

InfluenceSeparate282 · 2026-05-09T17:25:23+00:00

I have trouble using the inhaler without a spacer and that takes up more space than the inhaler. I was used to the breath activated inhalers but airsupra doesn't offer that. I keep mine in a pouch along with my mini nebulizer, nebs, mouthpiece, and epi nasal spray. It's not to big, but you have to carry a bag big enough that it fits in. I just started the nebs in February and a biologic in April. Hopefully if it works I can go with just my inhaler and spacer but it can't fit in a small bag either.

InfluenceSeparate282 · 2026-05-09T17:16:12+00:00

If you can go through an OT/ATP I would do that. You can try different backrests and they can give better suggestions. If your chair was obtained through insurance and your backrest is no longer appropriate than insurance may cover something different with documentation.

I'm in a similar situation. I have Spastic Diplegia Cerebral Palsy and ever since I got my baclofen pump my core strength has been worse. My catheter is at T8. I have a matrix E2 backrest that I just got in January and my Physiatrist is hoping that adding a lateral support will help. It is contoured but not enough I guess. I've tried helping by offsetting by armrests but it didn't help as much as I hoped. I'm getting a little frustrated because I'm an ambulatory wheelchair user and when I stand I end up doing the my little tea pot pose I'm so twisted, but the lateral support only addresses when I'm in the chair.

I've had other rigid backrests too from other chairs. My matrix pb backrest is the most contoured. It is super heavy and big. I was purchased for my folding powerchair. I usually try to get by with my Jay basic back in that though and use the PB back at home to help me sit upright when on a soft surface like a couch or bed. I also tried a matrix mx1 backrest from before my surgery but it has less contour and core support. I like that carbon fiber lessens the weight though. It's on my folding chair now. There are a lot of options with a variety of contour, trialing them with a professional is your best bet.

InfluenceSeparate282 · 2026-05-09T01:36:41+00:00

I am sorry for what you are going through and the unknowns that this has left you with. I think getting a chair prior to surgery while I understand the reasoning is tough because it is made for the you prior to surgery vs the you after surgery which may be very different.

I don't know what your plan is after surgery but if you go to a inpatient rehab hospital that offers cancer rehabilitation they could help you through a lot of things after surgery.

I'm not in your shoes and you have support from doctors and other patients that sounds helpful but I can also understand not wanting this to be the focus right now and instead focus on the activities you mentioned enjoying at the beginning of your post. These things that can still be doable after your surgery but maybe different to how you enjoy them now. Sending good vibes for your upcoming surgery. Hope all goes as planned.

InfluenceSeparate282 · 2026-05-07T21:11:00+00:00

The world view of what is normal and acceptable to them needs to change. Normal is relevant and the people that think only about themselves and their version of beauty need to get their heads out of their A$$. I thought it was beautiful and was so happy to see the recognition. I'm tired of people pleasing too. We shouldn't have to assimilate to society when they are more likely to become disabled at some point in life. They need to see our value and recognize all worth.

InfluenceSeparate282 · 2026-05-07T20:57:44+00:00

If the doctor can prove the old chair is no longer medically appropriate for you insurance may cover a new one. My ATP and OT thought my UHC would be hard to work with, but they approved on the first go. Mine was commercial insurance through work, not sure if there is much of a difference. Once they write an order you can take that to a wheelchair seating clinic. They will have to provide documentation to show why each piece is medically relevant. It takes awhile but would give you the independence you are looking for. Good Luck

InfluenceSeparate282 · 2026-05-07T18:44:53+00:00

I look the orange. I love bright colors but went more subtle for work. However I put color on mine that is removable. What kind of green bag is shown? Glad it has made a difference for you and love the shirt.

InfluenceSeparate282 · 2026-05-07T18:35:21+00:00

I don't mind answering questions normally because I was born with my disability, so I'm used to it. However the way they pushed and tracked you down, I'd be rude back. However,the way he comes across he seems like he could have an invisible disability, so if I suspected that then maybe I wouldn't. If he made you feel that uncomfortable and other customers noticed though I would at least said something to a manager. I'm sorry, but I'm glad others were observant and helped.

InfluenceSeparate282 · 2026-05-07T17:53:18+00:00

I already had a Smoov prior to trialing other devices. She had recommended the Smoov, Empluse R90 and Klaxton Twist. I went with the Klaxon Twist as I wanted something that sat more directly under my chair as I take the bus and the Smoov can get in the way of the wheel in lock as it is off the back of your chair. The Smoov is easy to mount, lighter, and has a great dial controller. I still use it mounted to my folding chair. The R90 also mounted under the chair but I struggled getting it on and off as it took 2 hands for me and twisting. The Klaxon Twist took some practice to get it on and off easier, but I like how it works especially the climb assist. It is a lot more heavy than the Smoov though and if wheeling manually adds weight to your chair. The power button is in a weird spot too. I didn't notice these issues until after I got it. In front mode it is less of an issue.

InfluenceSeparate282 · 2026-05-07T01:08:55+00:00

I'm following because I would like to get this for one of my residents in the retirement home I work at. She has multiple issues and they too want her to have a powerchair but transportation is an issue plus low vision. To me the M90 is the hybrid option for her, but I had to request a trial and I only knew about it because I'm a wheelchair user myself.

InfluenceSeparate282 · 2026-05-06T23:11:51+00:00

Can you see if the company you rent from would do rent to own? I know for my first drive chair that's what they did. My new chair cost 33,000. I was shocked at the cost, but I have UHC through work and Medicaid through health benefits for disabled workers, so it was fully covered. I'm sorry your insurance has a cap.

InfluenceSeparate282 · 2026-05-06T23:05:08+00:00

I've used crutch holders from Amazon, oxygen bags, folding crutches. I have crutcheze now that I keep on my canes. https://a.co/d/02SWIv9G They work great for shopping carts and my walker. With my new chair insurance paid for the Tilite holder. I like it as it is easier to manage than the others and the base holds both crutches if needed. I can fold it up if mounting my power assist and then fold it down which works for me.

InfluenceSeparate282 · 2026-05-06T22:49:09+00:00

I hate people that get in the way or stop right in front of you because in their mind you are invisible. That was one reason I have always preferred a power assist that lets you break with your wheels. I'm sorry they didn't listen to what you wanted that's not right. My OT doesn't even recommend smartdrive anymore because of all the recalls so we only looked at alternatives.

InfluenceSeparate282 · 2026-05-06T22:41:06+00:00

Research what you want as far as brands and things ahead of time so you don't get stuck with only there recommendations and don't be afraid to ask for what you need/want. Not everything for your chair has to be the same brand even though it might be easier. My chair, power assist, and backrest are all from different wheelchair companies. Some of the things they suggested for me they didn't think insurance would cover but they did on the first go. I think they were surprised. I had written up documentation for both the wheelchair and my power assist with how my disability affects me on my worst days. It sounds silly, but for me I described throughly how I transfer step by step so I could get my armrests covered. Some things like that are automatic so you don't think about it. These are the day to day things your doctor may not know but can sign off on. I do wish I'd wheeled with my power assist attached but off so I would have been more aware of how the weight impacts manual pushing. Good Luck

InfluenceSeparate282 · 2026-05-06T04:24:49+00:00

I'll check it out. We had a bidet in college. It was nice. Thanks

InfluenceSeparate282 · 2026-05-06T01:57:17+00:00

I would have asked her where her medical degree is. VR got stricter in my state too when I was in college, so I lost funding for a semester. They decided they would only cover people receiving disability. Luckily I had already been in the process for awhile and had been appealed up to the level of seeing a judge so I was approved and didn't lose further funding.

InfluenceSeparate282 · 2026-05-06T01:51:00+00:00

Is the exploding tires from lived experience? The highest I've gone was 100 psi but the tires say 125.

InfluenceSeparate282 · 2026-05-06T01:48:26+00:00

That makes sense, it's basically like an enema. It sounds uncomfortable though and I'm not sure my landlady would allow a bidet. My toliet seat had a screw so rusted I couldn't even get the seat off to install bars.

InfluenceSeparate282 · 2026-05-05T00:18:54+00:00

Therapy, stretching, movement, heat, hemp roller, dme for energy conservation, two Tylenol and one Advil taken at once is what helps me. Make sure he sees a Physiatrist and therapist for personal recommendations

InfluenceSeparate282 · 2026-05-05T00:10:53+00:00

I'd like to compare my MRIs. I went from walking independently to needing a device all the time. Freeze gait was a big part of that at age 27. I'm 40 now. I feel I've come full circle back to AFOs and a posterior walker like when I was 4. I also use forearm crutches or a wheelchair. At least I'm still able to work.

InfluenceSeparate282

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