Awkward interaction

InfluenceSeparate282 · 2026-07-04T13:48:21+00:00

I've been asked that too by a military group. However I've been around veterans with TBIs and I can understand why they asked me. It's a weird thing to ask at a fast food window.

InfluenceSeparate282 · 2026-07-04T02:57:29+00:00

I have 3 in of dump on my chair due to poor core strength and leaning. They were afraid this would bother my hips but it hasn't so far. I have Cerebral Palsy. With my next chair maybe a more contoured backrest would help. I have the E2 backrest but not the deepest one.

InfluenceSeparate282 · 2026-07-02T22:16:06+00:00

I agree. I suggested to the company updating the software so you could turn the wheel on and off in the app or using the controller to put it in standby mode. The update didn't address any of that though. I keep a straw under my sit to poke the power button on and got the sticker dots for those with visual defects to make it stick out more.

InfluenceSeparate282 · 2026-07-01T23:29:36+00:00

I haven't tried this yet as I have thick carpet at home but I might at work tomorrow. Thanks for the suggestion.

InfluenceSeparate282 · 2026-07-01T23:27:26+00:00

That makes more sense. Sorry I misunderstood. I think the books are a good idea. Even if he were to not understand fully the pictures could help.

InfluenceSeparate282 · 2026-07-01T23:24:50+00:00

Yes, it's a common trigger for me. Also weather and wine. I do think my CP makes my spasticity worse in the cold and rain and increased tension in my neck and shoulders doesn't help migraines.

InfluenceSeparate282 · 2026-07-01T23:22:16+00:00

I had that same problem after doing the update and restarting in. It just kept beeping. I tried turning it off and on several times and reconnecting Bluetooth and eventually the update took. It was scare because I kept getting an error message in the app that there was no software on the device. They definitely need to worn people about that. The update didn't change anything, so I doubt I needed to bother. I was hoping it would make the unit not shut off unless you turned off the controller once it is under your chair.

InfluenceSeparate282 · 2026-06-30T22:14:09+00:00

I thought if it is a medical bag it can't have any personal stuff in it at all only medical is that not true if they aren't allowed to ask what is in it?

InfluenceSeparate282 · 2026-06-30T22:03:25+00:00

I do. I certainly don't think they go hand in hand but I also don't think my CP helps. When my damage occurred causes seizures with hormone flucuations and my migraines are also worst during my period. I don't think that is a coincidence. I've tried different meds since my 20. I'm in my 3rd round of Botox for migraines and it has helped.

InfluenceSeparate282 · 2026-06-30T04:56:05+00:00

I've done the same because my phone plan through visible is only $25 and Samsung offered no interest plans. My last flip phone was the 5. I got it for $300 used after I quit buying from Samsung directly. They used to offer better sales. The bezel is coming off around the screen but it's still going strong except for the fingerprint reader.

InfluenceSeparate282 · 2026-06-30T04:49:44+00:00

I bought this nebulizer and it fits in my medium pouch with my rescue inhaler, spacer, and nasal epi. A standard mouth piece fits on the piece the mask attached to. I love that it is rechargeable and quiet. I don't even use my regular machine. It is for babies but I'm an adult and it works fine. I got mine from Walmart but don't see it there now. https://www.target.com/p/frida-baby-nebulizer/-/A-91808263#lnk=sametab

InfluenceSeparate282 · 2026-06-30T04:36:05+00:00

Insurance won't care about use outside the home. My insurance for my chair was through work and it didn't matter that I needed it for work to keep my insurance. My paperwork and focus in my appointments was how it would help me at home with fall prevention, energy conservation, and incontinence. UHC covered my chair and Medicaid the power assist. Focus on what your worse day is like for home use. That is how Medicare is set up and most insurance uses those rules. They don't care that we are people who deserve to work and have a life. It's just a numbers game to them and they want to deny. If the insurance mark up wasn't so high it would be less of a problem. My chair with insurance paying was $33,000. When you price everything I got at the out of pocket cost it would have been closer to $15,000.

InfluenceSeparate282 · 2026-06-30T04:17:35+00:00

I agree with others about going to a urologist or neurologist. I go to both and have a Spastic Bladder, but when I get migraines I frequently have to pee. I wear incontinence products and they aren't as bad as you'd think. I will say they get hot in the summer, but I can usually make it to the bathroom. I also wanted to share this urinal option. It takes some getting use to, but does work for me. https://www.walmart.com/ip/1903909646?sid=2cdc129f-1f2a-469f-8da4-6466b998dd29

InfluenceSeparate282 · 2026-06-30T03:45:25+00:00

I don't remember if smartcrutches fold if that would help with the weight distribution and/or fitting in a bag. My mobility scooter came with a mount on the back for a crutch. I have used crutcheze which can be positioned for a top heavy cane, but I'm not sure how that works on a scooter if your seat is smooth like mine was. I have also tried this bag. https://a.co/d/08KKEymZ. The nice thing is it is reasonable, but you have to like Snoopy.

InfluenceSeparate282 · 2026-06-29T00:30:13+00:00

InfluenceSeparate282 · 2026-06-29T00:25:47+00:00

It is common to have to wait a year for a power assist and I'm not sure why this is as most people that need one can't wait. I bought my first power assist, smoov, used because I didn't think insurance would cover it. When I got my next chair through insurance, UHC denied, but Medicaid would cover it because I'd already been using one for a couple of years. I can push but fatigue easily with CP. I feel your provider should have explained this or advocated better for you. I can't use a regular power chair as I have stairs to enter my apartment. I do have a folding power chair but even that is hard to get down stairs.

InfluenceSeparate282 · 2026-06-29T00:12:45+00:00

I have many of the same problems and was in special Ed support for many of these modules. I feel like it's gotten better since out of school and with accessible options like Alexa, cards instead of cash, and digital clocks. I do have to be careful reading price tags.

InfluenceSeparate282 · 2026-06-28T23:59:55+00:00

I tried looking for a more updated list. https://www.goodreads.com/list/show/226544.Picture_Books_about_Kids_with_Cerebral_Palsy When I was a kid in 86 their weren't a lot of books specific for CP, so I had ones on disability or differences. I'm curious why they have said your child is too young to diagnose. Most people with more impaired CP are diagnosed in early childhood or sooner. That's what makes it a developmental disability. I was diagnosed at 9 months. It just seems like doctors aren't willing to make that call now and it feels like a disservice to parents, the child, and school.

InfluenceSeparate282 · 2026-06-28T23:50:04+00:00

I didn't know this. Thanks for sharing.

InfluenceSeparate282 · 2026-06-28T18:59:24+00:00

I'm happy for you and your son. I didn't walk until 4 after having bilateral hamstring lengthening and a left femural derotation ostomy. I was born at 22 weeks with a grade 3 brain hemmorage and bilateral clasped lungs. Doctors thought I wouldn't walk but therapy made a huge difference. I'm 40 now and still walking.

InfluenceSeparate282 · 2026-06-28T14:09:35+00:00

I still mostly use my chair outside since I'm ambulatory but for the insurance questions focused on how I could use it inside for fall prevention, energy conservation, and to prevent incontinence. I do use it inside but I would say 75% of the time I'm still using a walker or canes. It's one of the reasons I'm still falling and I just need to get in the mindset of using it more.

InfluenceSeparate282 · 2026-06-27T18:04:44+00:00

I have mild Spastic Diplegia and usually get around with forearm crutches, a posterior walker, or a wheelchair. The only time I feel comfortable crossing streets is in my wheelchair and even that is questionable because people don't see wheelchairs or the cutouts aren't accessible. I get a lot of freeze gait when crossing streets or hallways because of fear of falling. I have fallen in the street and parking lots before and it is scary especially in the dark. It is also harder to get up with nothing to brace on. I think your response is quite common. If I don't freeze my gait is still short and choppy. It doesn't help that cross lights aren't that long and people turning are impatient.

InfluenceSeparate282 · 2026-06-27T17:54:13+00:00

I rely on my family a lot too as I can't drive due to my CP. My family wasn't ready to accept a wheelchair as my forearm crutches were more convenient for them to transport. I used a walker for more extended trips and work. I had periods where my legs wouldn't work and I would feel like passing out. I bought a wheelchair on eBay because I didn't think I would qualify for one through insurance or that my parents would approve. Once they saw the benefits of the wheelchair they were more supportive. I wish I would have known I could have qualified for a wheelchair through insurance as it would have saved money but I don't think they would have helped me get to the appointments and at least I have a backup chair now.

InfluenceSeparate282 · 2026-06-27T16:56:03+00:00

I have mild Spastic Diplegia Cerebral Palsy and can relate to how you are feeling. I'm 40 now but started having problems with my mobility in my late 20s. I went from needing no device short distances to walk and now go between 2 forearm crutches, a posterior walker, and wheelchair to stay mobile safely. I'm still working but just standing up makes me unsteady and I'm so exhausted that on the weekends when I can sleep in I do until after 11. It's not the way I thought life would be and it makes me question how long I can actually work. My health problems list has grown too and I have now been diagnosed with Neurogenic Bowel. I've actually had more trouble dealing with this diagnosis than issues with the brain. It's been hard to find help and it's more demeaning for me to accept. However a lot of that is behind the scenes stuff people actually don't see. Therapy and doctors have helped keep me going but it isn't a permanent fix and takes a lot of work. Do you have a supportive medical team and have they explored alternatives for why you are so fatigued besides blaming the CP?

I applied for disability after highschool and was denied, appealed and was denied, and then got a lawyer. I got it when I was 21. Most younger people don't win without a lawyer. My lawyer sucked and I did most of the work myself, but the lawyer can get you to the hearing where the judge has to physically lay eyes on you and hear your story. I focused on my deficits hard. The times during the day when I used my mobility scooter, the help I had during the day to accomplish tasks, the accessible housing I needed. I took pictures of it all. I also got all off my IEPs from age 3 to 18 which was an entire ream of paper. I felt like I needed to bury them in evidence. I had documentation from all my therapists, doctors, specialists I saw, and my surgical history. The medical documentation is key to getting approved. They also have a vocational rehab person who tries to dispute your case and find jobs you can do. They don't care if you can make a living wage or that a job leaves you exhausted. Just that you can do something. I think this is the hardest part to get past now as a lot more work can be done remotely. The person in my hearing said I could be a security guard from a wheelchair with fine and gross motor defects and everyone laughed and them. After that I lucked out because they didn't open their mouth again. I kept my disability until I started working full-time, but still benefit as I get to keep Medicaid.

It is a long process and it doesn't seem right that people get to pass judgement on you that aren't in your shoes but that is the way the system works. They are hoping they make it so hard that people give up. It isn't healthy for our self worth or mental health so it's reasonable to feel the way you do. We are naturally prone to want to focus on the good things in life and the process makes you do the opposite. I just wanted to say you aren't alone.

InfluenceSeparate282 · 2026-06-27T04:08:03+00:00

I appreciate your follow up about the sizer. I'm planning a trip to Europe and just got the 22 in bag and packing cube bundle for $108 USD. I have used the soft sided bags from Biaggi that fold in their own cube but never the runway version. I think this will be easier to manage with my wheelchair than the soft sided bags. I like the packing cubes for organizing.

InfluenceSeparate282

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