Managing "help" when out of the chair

[slomobile]

I have trouble managing the people that want to, or need to help me when getting out of the chair, getting in, or when caught away from the chair when I need it. Wanted to ask if you have tips or strategies that seem to work.

These may be strangers, family, or medical professionals. They all seem equally clueless on how to provide effective help and I am equally clueless on how to direct them.

I am fat with a neck fusion, poor eyesight, poor proprioception and skin sensitivity so I can't see or feel large parts of my body to know what situation I have gotten myself into. The biggest help would be if they just told me what they can see. But asking for that just devolves into a series of follow up questions which I can't answer BECAUSE I don't know the state I am in, but they assume I do know.

I have transient leg paralysis. I need to use my muscles as often as I can to prevent atrophy. People see me walk, and they get confused when suddenly I can't. Even my wife and child who live with me constantly forget my disability because some times I am able. I even forget myself on days where I'm feeling good. Tuesday I felt great! Left the house with just a cane and didn't even load the chair. Walked in to my MRI appointment easily, locked the cane in the locker with ring and other metal stuff. Got in the tube easily. 45 minutes later "lift your legs" so they can remove the leg pillow. "I can't". They move my legs for me causing extreme pain in my back. I can't roll over or get off the table. "Can you get my cane out of the locker?" "It has metal." There is nothing around me which I can see to grab hold of. There is a long series of dumb questions. I lay out a complicated series of planned moves I think I can do with their help to roll over onto my belly which often resets my condition, enabling my legs again. Didn't work, made it worse, I fell off the table onto the floor. One tech asks the other "Do you think we should get the MRI safe wheelchair?"
Why was that not the very first suggestion when I said I cant lift my legs?

Wheelchair has no brakes, I cannot reach anything solid. A 90lb woman reaches out her hand to 300lb me while my arms are pinned between me and the floor. Uh, what am I supposed to do with that? "Thanks, but I don't want you to hurt yourself." My wife has been hurt several times helping patients sit up. I get no suggestions, can't really tell where my legs are. What worked eventually was a bunch of random wiggles of all the muscles I could till I could jam my hand between the tire and frame to form a makeshift brake to precariously pull myself onto the chair. They pushed me 5 ft to the doorway at the edge of the MRI room, handed me my cane, and expected me to walk out to my van. It took maybe 10 minutes to get to a standing position with my cane and the doorframe. Another 5 to shuffle an inch at a time another 8 feet with my cane when I felt I would fall any second and asked for a wheelchair transport to my van.

If I need help, it is usually because something is causing me pain and I need it to end. Their useless questions prolong the pain, which makes me grumpy. They don't want to work with a grumpy person, and I don't want to work with a clueless person, so the help available disappears.

Some people jump in without saying anything and interfere causing problems where none exist.
Others take the advice we often give, which is "just ask me how to help". I'm busy over here working the problem from my perspective figuring out what I can do. I don't have the mental capacity to be your brain too. I cannot see the bigger picture, both literally and figuratively.

As I type this, home alone, on the toilet, legs like logs, chair 3 rooms away, I am planning my fall off the throne onto the ground and dragging my ass into the shower. There must be a better way.

[Burgerman]

You are in a strange situation.
I am completely paralised from T3 T4 (nipples to you!) down, and am fat. Less so now after recent events however.
So I cant move anything other than my arms, and that inclused trunk control etc. As such I cant go anywhere wthout a chair. Not even a few inches.

So if attending that kid of meeting (mri) I would take one of my own carers and make use of a patient lift. You could do the same presumably.

But with various bits of unotainium in my body, I dont think mri scanners are even an option.

How are you managing to be on the bog, and the chair is in a different room knowing that you might need it?

[slomobile]

I was feeling fine. Walked from chair in living room to the kitchen to pour my coffee and back without issue. Perfect gait even. No issues if I'm vertical less than 10 seconds.

I know I need to poo when I get low back pain. The normal sensation is gone, but the pain is about 90% reliable. I usually walk in there, sit down, poo, bidet seat because I can't turn my trunk, pain goes away, walk back to prone chair or one of several small beds I have around the house.

This time the back pain didn't go away. My legs got all tingly all the way to my toes for a few seconds then lost all feeling and ability to move them.

The planned fall to the floor went fine. I dragged myself a few feet to a pile of towels and shoved them under my belly laying face down for about 20 seconds then "pop" in my low back. Now everything works, and continues to. It has happened a handful times. And a handful of times the back pain has come followed quickly by leg paralysis before I was able to get to the toilet and I fell and shat myself. Once in the aisle of Walmart it took 20 minutes laying on the floor before the legs came back. That was before I figured out which posture I needed to recover quickest and before I built the prone chair.

The MRI was one step in the process of figuring out why this is happening. I don't know why and neither do the docs. So if you have any ideas or know of any similar histories I would be grateful for feedback.

Edit: I have titanium in my arm and neck but they are fine in the MRI. Even a sine stimulator which they would like to add is MRI safe, but it is so bright on images that it blocks view of nearby structures.

[biscuit]

Keep fighting the good fight, Slomobile! I fell down and crunched some of my ribs in November, because I got overconfident of my balance. That was a price I'd pay again cheerfully at least every four months or so, because the months of hard work leading up to my painful pirouette reminded me how to use abilities I had lost for some years.

[martin007]

My life is a continuous obstacle course...

So if attending that kind of meeting (mri) I would take one of my own carers and make use of a patient lift.

Would you take your own elevator?

[Burgerman]

You mean lift? No. hospital has many.

[martin007]

You mean lift? No. hospital has many.

And many nurses without the desire to work...

[slomobile]

Beer raised to many more painful pirouettes biscuit.

I have no carers but my wife and son. They can't lift me without hurting themselves, so I have ropes, chairs, cots, strategically placed to help me pull myself up onto my belly. I hope that keeps working.
Don't even know how to go about getting a carer.
I think I am not disabled enough to qualify.

Re: Elevators. I've been looking at the layout of my house and I think some type of elevator might be possible and useful.
Just inside the front door on the left is the stairway with a 33" wide x 41" long landing nicely sized for my chair. Directly above the landing is the wall of the upstairs bathroom at it roomiest part without any plumbing, directly across from the toilet. That area is also immediately adjacent to the upstairs balcony.
So if I could arrange some sort of lift platform (perhaps drop 4 cables from the attic) I could have a wheelchair accessible bathroom and balcony that are currently off limits.

[Burgerman]

There are a few different types of lifts that take a powerchair. And even stairlifts.

Here I would call the LA and they would organise OTs for assessement etc and likely pay for the cost with hard earned taxpayers money. Because way too socialist! It doesent bother me if its for someone that needs it. But we house, subsidise, pay £££, to millions that are basically too lazy to jet a job in the same way. They go fishing everyday while the rest pay. Happens everywhere but theres much more of it in predominantly black areas of london. I will shut up now

[Burgerman]

Dont you get any help for such hings from the government at all?

Hae a look here. Theres a stair lift too. Works well my deceased freind had one to get to his bedroom/bathroom etc.

https://www.levellifts.co.uk/wheelchair-lifts/

[slomobile]

I filled out all sorts of intake paperwork for the state and they just said no. Not an official no on a letter that I could appeal. Just a no from the random clerk who took my paperwork, decided I wasn't disabled enough, and refused to enter my information into the computer.

Dont want a stairlift, the rest of the family needs the stairs to be normal. I just want to go straight up 1 floor, without a box around me. Just a platform with a small lip to keep me from rolling off the back, like a van lift.

[Burgerman]

Strange system you have. Where some random clueless clerk can decide your life and options. Here thats the job os specialist OT's and if they dont agree your doctor too can intervene and you can disagree with any outcome and re-assess.

[biscuit]

I have no carers...
...I have ropes, chairs, cots, strategically placed to help me pull myself up onto my belly. I hope that keeps working

Do not say anything like this to assessors for help or equipment you are applying for! They think, if you say "make life liveable", that means the same as "have no problems". Because the average person cannot imagine the difficulties disabled people overcome. And these are distinctly average people . It also happens in the UK. They sometimes need a kick up (in the UK, there are appeal processes) to assess on the basis of evidence instead of assumptions.

[slomobile]

Strange system you have. Where some random clueless clerk can decide your life and options. Here thats the job os specialist OT's and if they dont agree your doctor too can intervene and you can disagree with any outcome and re-assess.

Here also, determinations are supposed to be made by OT specialists. The problem is getting a chance to meet one that knows anything about your condition. I waited several months to see one and she had only ever been trained on hand therapy for people with carpal tunnel syndrome, RSSI. Absolutely pointless.
Asked my primary doctor for a wheelchair evaluation, necessary step to have insurance pay for a chair. He sets up a date at the hospital with their mobility specialist OT. The hospital calls me to say if I want to keep my appointment I need to get a rep from my DME to be there on the same day. Fine, I call the DME. He says whats your diagnosis? Iatrogenic spondylolisthesis with central and foraminal bony stenosis. had bilateral lumbar laminectomy without fusion and 3 level cervical fusion acdf. "Uhm. Thats not on my list. I'll call the hospital and cancel the appointment." He did. The hospital refuses to reschedule. I have only been able to talk to clerks, schedulers, and secretaries with no medical training, but they are running interference and gatekeeping for the people I need to see.

It seems absolutely stupid, but I don't know any way around it.

[Burgerman]

Deregulate all the medical nonsense. Regulation and the corruption that is insurance (corporatism and backhanders etc done by finantial donations and worse) is the cause of your medical systems woes. If you want a kitchen, car, dod kennel, air conditioning, you make a call and they fight over your custom. Because thats free markets at work. Capitalism, not regulation and bribes. You can get any car you want in any colour or trim you want next day practically! They COMPETE to sell you a car. Or kitchen etc. That results in rapid service, low prices, and good products that makes them richer at the same time. Doesent apply to your medical system. Vote for someone that will deal with it. We are stuck with a hopeless NHS for similar reasons. Over regulation, no free market competiton.

[ex-Gooserider]

Strange system you have. Where some random clueless clerk can decide your life and options. Here thats the job os specialist OT's and if they dont agree your doctor too can intervene and you can disagree with any outcome and re-assess.

Here also, determinations are supposed to be made by OT specialists. The problem is getting a chance to meet one that knows anything about your condition. I waited several months to see one and she had only ever been trained on hand therapy for people with carpal tunnel syndrome, RSSI. Absolutely pointless.
Asked my primary doctor for a wheelchair evaluation, necessary step to have insurance pay for a chair. He sets up a date at the hospital with their mobility specialist OT. The hospital calls me to say if I want to keep my appointment I need to get a rep from my DME to be there on the same day. Fine, I call the DME. He says whats your diagnosis? Iatrogenic spondylolisthesis with central and foraminal bony stenosis. had bilateral lumbar laminectomy without fusion and 3 level cervical fusion acdf. "Uhm. Thats not on my list. I'll call the hospital and cancel the appointment." He did. The hospital refuses to reschedule. I have only been able to talk to clerks, schedulers, and secretaries with no medical training, but they are running interference and gatekeeping for the people I need to see.

It seems absolutely stupid, but I don't know any way around it.

Your state should have a Commission on Disability, call them and file a complaint... There will also a legal advocacy outfit - in Mass. it's called the Disability Policy Consortium.... Again call and make a complaint / ask for advice.... Sounds like an open and shut case of 'Discrimination Due to a Disability' as you are being denied services because you have a disability - This is a total and complete violation of the ADA... You might also call the US Justice Dept. - particularly the US Attorney for your state...

You could also try reaching out to any local media's "Consumer Issues" or "Problem Solver" type folks if you are willing to become a public issue.

Another option is to look up who are the hospital top boss types (Chief Medical Officer, CEO, etc...) and show up in their offices, demanding to speak w/ them ("But you don't have an appointment" = "That's OK, I'll wait..." as you fasten your chair o an immovable object...)

That you have a disability that "isn't on the list" does not mean you aren't disabled, and that you aren't on the list is THEIR problem, not yours..... The basic formula is raise enough of a stink that they will take care of you in order to make you go away...

ex-Gooserider (Chair of my town's Commission on Disability)

[biscuit]

In the UK there is a very clear distinction on the application forms between "needing help" and "getting help". For example, nobody else would like a wheelchair ramp at my front door, so I don't have one. And my mother drives a monstrous WAV instead of a cute little coupe. And we neither of us easily open our home to carers, so they are transient. These are compromises we make in this house, and it's us that live with them. Not somebody else. How I manage my life is not the basis for deciding my needs.

[Burgerman]

Not sure I follow that.

For e.g your door ramp. I cant get in without one. So I took the LA ramp "cash" and added it to doing the job properly. So that the concrete and steel ramp with scaffolding style rails they wanted to pay for ended up in my full driveway with wider front door, and a gentle but invisible slope up where there was 2 steps before.

So I ended up with part of the cost towards my driveway/front door which now looks much better, is an "invisible" adaptaton, and is easier and wider for everyone inc a powerchair.

Here:https://www.wheelchairdriver.com/images-house/1%20(47).jpg
Used to be a grass lawn, a drive to the left, and a garden path and 2 steps. I integrated it all so no ramp needed.
Did much the same by removing walls, extending interior and the same thing out the back.

You just need a joined up plan rather than a steel and concrete council ramp. But let them pay at least some towards. Because nobody wants ugly adaptations on their house!

[biscuit]

I'm just not a joined up plan type of person, never have been and too old and stupid to start. My experience is that a lot of difficulties just give up trying to bug me and go away. That is, the disease goes into remission. SCIs are usually visible and don't go into remission.

But I would say, it is too easy to do that frog thing with the hot water. Unless your disabilities are clearly visible to an objective person, it's too easy to remain unaware of how much trouble you are in and get overwhelmed. I ignored my difficulties for years and it caused me a lot of issues with work, physical health, mental health, government paperwork, you name it.

Ex-Gooserider is spot on with his post above.

[Burgerman]

Oh I agree. I had to do all that and more. But I am very good in a fight wth officialdom. And one thing I never do is give up! They didnt *want* to do things my way. I gave them no choice. If you dont have a "plan" and actually insist on it, then you end up with that ugly ramp and other adaptations like it.

I ended up with a completely remodelled house, none of it actually LOOKING adapted. But the fact is that it is. All doors widened to 800mm or wider, many walls removed to make space to swing a cat, adapted kitchen so that I can use all the tall and high units, but nothing that LOOKS adapted. Just easy for everyone. Same with flooring, all dark carpet tiles (easy maintainance) or dark ceramic tiles. All rooms at the rear of the house extended by 5 meters so kitchen, bedrooms, etc. All for that essential indoor space. No point in adapted kitchen units etc if you cant move!

So I did a large plan. Got the LA to subsidise it. Otherwise you get their non joined up "mods" that look bad and still dont work well, and then have to destroy it all to do it properly at some poin in the future. I wont get any better! Only older. If I had not already lived in the perfect house (a bungalow that has lots of parking space, 5 mins from the town centre, quiet street, detached etc) to be a wheelchair user I would definitely have MOVED first to somewhere that was like this. Because theres no point throwing good money after bad, which I have seen people do repeatedly.

[biscuit]

And also... It is no good to use medicalese on your forms. Medicalese is for doctors communicating with each other. For us ordinary people, and as well as OTs, DMEs, physios, assessors and any other minions, stick with ordinary words. If you need to look up a word, you can be sure they will also need to. And while you may want to understand these words, it is probably above their pay grade to look it up.

[slomobile]

Commission on Disability
legal advocacy outfit - in Mass. it's called the Disability Policy Consortium
US Justice Dept. - particularly the US Attorney for your state
local media's "Consumer Issues" or "Problem Solver" type folks if you are willing to become a public issue.
hospital top boss types (Chief Medical Officer, CEO, etc...) and show up in their offices, demanding to speak w/ them ("But you don't have an appointment" = "That's OK, I'll wait..." as you fasten your chair o an immovable object
raise enough of a stink that they will take care of you in order to make you go away...

ex-Gooserider (Chair of my town's Commission on Disability)

Thanks, I knew there must be something, but didn't know what they were called. I'll definitely call the first two for advice, but try to be anonymous as long as possible, due to my wife working for the hospital. If I behave badly, it reflects on her. And we are restricted to that hospital by the insurance. I definitely wont be going on TV. But I have already used my chair to block surgeons exit from the exam room till he answered some questions. Backed down for my wife's sake but I was livid.

[Burgerman]

And we are restricted to that hospital by the insurance

Really?

[slomobile]

And we are restricted to that hospital by the insurance

Really?

Yes. It is a PPO. https://www.healthcare.gov/glossary/pre ... ation-ppo/
She was employed by an independent clinic, but a large regional conglomerate bought just her department of that clinic. So now only the conglomerate's facilities are "in network". We can go elsewhere if we really want to and pay out of network rates which are about 80% of the walk in pay cash price, which is outrageously high for stupid reasons. If we travel outside of the region, or need specialist care not provided by the conglomerate, its almost worse to have this insurance than pay cash. Because they still restrict treatment to what would have been covered if seen at an in network facility.
Have surgery and pay cash, you get top care and can stay in recovery as long as the cash holds out.
Have surgery and use this crappy insurance to pay 20%, mandatory budget care and go home same day or transfer to in network hospital.

The CEO has no medical background at all, purely profit driven MBA and ruthless. They monitor social media and have a history of firing employees over posts made by family. So I think I'll keep the name out of it.

Negotiated contracts for healthcare SUCK. My kid has an excellent dentist. He discovered an aggressive keratocyst growing in my son's jay early That was 8 months ago and the surgery isn't even scheduled because aggressive contract negotiations caused most of the anesthesiologists to walk out. No anesthesiologists, no surgery. There is a huge backlog of surgeries now, so when they finally do reach an agreement, it will probably be a long toime before we get in. In the meantime the cyst is growing, eating away jaw bone. Evaporating the good from finding it early.

[slomobile]

Oh, and that is at an out of network hospital, because no in network provider is capable of doing that surgery.
We can't go out of the region because the doctors don't have priveldges anywhere else.