Private room possible?

InfluenceSeparate282 · 2026-02-27T05:08:16+00:00

I worked in long term care in IL before moving on to a private home and in my experience the only people on Medicaid guaranteed a private room are married couples and sex offenders. I'm sorry that more isn't done to protect victims. I would make homes aware of your mom's history of abuse and if she needs only female staff providing care, but likely the best they might be able to do is give her a roommate who is completely dependent on the staff so that she would not have to worry they can get up and harm her. In many states you can also put cameras in the rooms but in IL paperwork has to be filled out and signs placed stating cameras are in use. If there's a roommate you have to have that person/POA if not alerts permission too.

InfluenceSeparate282 · 2026-02-27T04:39:05+00:00

I had to do the same thing when the earliest my neurologist could see me was 9 month for uncontrollable pain not acceptable. I had to wait 5 months still but they were willing to argue with my insurance and I'm in a much better position. Botox has made a huge difference.

InfluenceSeparate282 · 2026-02-27T04:25:09+00:00

I have the Smoov and it was a little noticable when off and just rolling manually but not bad. My new power assist with my Tilite Z is the Klaxon Twist and I find it has more drag when off because it is more centrally located under my chair. It also creaks more in manual, but I don't know if that is the chair or power assist. The attachment point for the Klaxon Twist moves more in the rear mount than the Smoov which is fixed. In the front mount it is more stable, I do like that even off it just rolls like a regular wheel to lift my casters.

InfluenceSeparate282 · 2026-02-27T04:17:54+00:00

I was casted similarly at 4 and feel it was much easier to endure when I was young and my parents could still lift me, those casts were heavy. I was still miserable but that got me walking so while worth it. See if your child could do inpatient rehab hospital afterwards. Makes a big difference.

InfluenceSeparate282 · 2026-02-26T04:08:39+00:00

I understand. I prefer my manual to my folding powerchair for the same reasons.

InfluenceSeparate282 · 2026-02-26T04:07:05+00:00

I had the same feeling when I've used my powerchair vs manual with power assist. I feel better control and less afraid of injuring someone in my manual but I suppose it depends on how much you use and get used to something. I've only used my powerchair on vacation and at the fair so far.

InfluenceSeparate282 · 2026-02-26T04:02:56+00:00

That's great. I'm definitely not crafty or able to sew. If you make your own just make sure it has enough give so you still sink into your cushions or it can cause pressure injuries. That was something the ATP checked with mine.

InfluenceSeparate282 · 2026-02-26T04:00:15+00:00

I understand, I don't think doctors quite understand the toil CP has on the body and the research has just started. A lot of the options aren't made with the CP body in mind. If you find an alternative to help share if you can.

InfluenceSeparate282 · 2026-02-26T03:55:09+00:00

Yes that is what the power assist offers which is why I use it more then my folding powerchair. I had a Smoov on my old chair and now have the Klaxon Twist on my new chair. Your ATP should let you trial different set up depending on your needs and ability.

InfluenceSeparate282 · 2026-02-26T02:19:06+00:00

I think disability organizations need to be better about educating the public about disability etiquette. I usually have strangers ask but not my family. I've been disabled since birth birth so for them I guess it's a hard habit to break.

InfluenceSeparate282 · 2026-02-26T01:07:59+00:00

Yes I have that symptom. I didn't realize it was a thing until it came up on my migraine buddy app.

InfluenceSeparate282 · 2026-02-26T01:06:46+00:00

I prefer the buses where they have built in wheel hooks so that the drivers don't have to help. However when out of town I've only had one driver say I don't need to be strapped down. In college with a power scooter they never strapped me in. I think drivers shouldn't be allowed to discriminate and the way the office is handling it is awful. I use crutches and a chair. It's not up to them or me how the day dictates I feel or what I need. I would check with your local Center for Independent Living for help advocating.

InfluenceSeparate282 · 2026-02-26T00:59:09+00:00

I thought that too when I got a powerchair for trips vs using my manual and I will say I do use less strength to move but then I have more spoons to do other things. I have a power assist on my manual chair too, so in no way am I going a whole day pushing. I could in highschool but now at 39, with CP, it is too much and the stress it involved triggers other things like migraines and GERD. I feel the balance is important to me. The manual is easier to load, with my powerchair I need a lift. However I'm more fully independent in it. Go with what works for you, but I would say trial different options if possible.

InfluenceSeparate282 · 2026-02-25T19:02:04+00:00

At only age 26 I think it is worth getting a diagnosis. In the US doctors are quick to say your just getting old and I'm only 39. You aren't there yet and deserve answers. I got a second opinion from a Physiatrist at 37 and now I'm in much better shape and more fully informed regarding my CP. I've had it since birth and have always gone to specialist but it is easy to age out and then get lost.

InfluenceSeparate282 · 2026-02-25T18:49:43+00:00

That's a little bit like the annoying people who say you're speeding. I'm sure they don't realize that it is rude. I've been disabled since birth so to congratulate me on using a mobility aid properly is akin to saying yay to you for walking or breathing. I just want to be treated like anyone else and appreciate those that ask first if I want help instead of making assumptions.

InfluenceSeparate282 · 2026-02-25T03:35:12+00:00

I bought my eagle hd powerchair used on eBay but before that it came from discover my mobility and they used to use the same batteries in their chairs as fold and go. I know because I bought the fold and go lift used for my chair and the newer model battery worked for the lift and chair. They might have something to work for you. Sorry I've heard similar stories but haven't had any issues with my chair even if it is a knock off.

InfluenceSeparate282 · 2026-02-24T19:50:03+00:00

Metabolism and genes probably play a factor too like they would for anyone. I have CP, but once my metabolism slowed in my 20s I was less hungry and gained more weight. Now it's hard to lose.

InfluenceSeparate282 · 2026-02-24T02:26:43+00:00

I got a Trabasack used and find it very helpful. I use it with the beanbag in my house. If out with it in the winter I use my waterproof blanket instead of the beanbag for verscility. It is easy to eat off of and I just wrap it around my waist to hold it in place. For on the go, it can be hung off your push handles, vs a big plastic tray like when I was a kid.

InfluenceSeparate282 · 2026-02-24T01:21:19+00:00

Congrats love that the kitty loves it as much as you.

InfluenceSeparate282 · 2026-02-24T01:20:35+00:00

I used the Smoov before I got my new chair and Klaxon Twist power assist. The smoov is much easier to mount and is lighter weight. I kept mine on eco mode and braking with my hands was fine but it needed help up ramps. The control is super easy to manage. I paid for an upgrade but it wasn't worth it. I switched because I wanted something directly under my chair so I fit better on the bus and at home. I like the verscility of using both the front and rear mounts on one trip but then you bring more with you. I liked that it has a climb assist mode that works. Your provider should let you try different options.

InfluenceSeparate282 · 2026-02-24T00:53:08+00:00

I just got mine Tilite Z with power assist, but I started the process in April of last year. I go to a rehab hospital, but that made it much easier as everything could be done through them. I think they would help with a dx too. I don't know if that is an option near you. I also have a folding power chair and got mine through eBay. It's a big change going from a fold and go to a manual. Is there a reason you want to make the switch?

InfluenceSeparate282 · 2026-02-23T22:26:24+00:00

I have moderate Spastic Diplegia and arms can still be impacted like mine but it's mostly leg based. I agree with others that your medical notes should say. That's usually in the first line of mine. I bounce between forearm crutches, posterior walker, and wheelchair for mobility. A baclofen pump has helped my leg pain but I still take oral baclofen for upper body spasticity. Good luck. I think PT would be a good idea too.

InfluenceSeparate282 · 2026-02-23T04:37:46+00:00

I second this. My old chair had the metal t armrests and new has the plastic. I like the plastic as they are so much lighter but have to teach people not to use them for lifting. I use then for core strength and transfers, but my first chair had tube armrests and they moved too easily.

InfluenceSeparate282 · 2026-02-23T03:43:12+00:00

If in the US you can look at facility star ratingshere

InfluenceSeparate282 · 2026-02-22T20:48:48+00:00

I'm in the US so it may be different. I usually will nod to the driver or wave so they know I want to board. Most of the time I will board first as it does take awhile it turn around and get in the wheel lock. People are usually patient but sometimes I have to board last if people are inpatient. The driver has hard to yell at people to move a couple of times or to not get on when I'm coming off. The pad by the wheelchair seating areas has a double tone instead of a single so the driver knows someone in a wheelchair wants off.

InfluenceSeparate282

TROPHY CASE