So, wheelchair
Sep. 7th, 2014 04:50 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
davidgillon Or rather convincing my GP I need a wheelchair assessment from Wheelchair Services as a first step towards getting a wheelchair that actually meets my need as someone with HMS and fairly severe seating issues.
I have an appointment on Tuesday, which almost certainly means I'll get the older, somewhat lazy doctor with fixed ideas rather than the younger one with more modern, flexible attitudes (who mostly does Mondays and Fridays). The advantage is that she's known me for 25 years, the disadvantage is that she's known me through 25 years of misdiagnoses and I'm fairly certain she doesn't know what my actual diagnosis is. I'm not even certain my diagnosis is in my medical records as that came out of the Pain Clinic rather than rheumatology or ortho, I'll have to dig out the pain clinic letters and see what they said.
So, problem: convince an old-fashioned, lazy doctor on the verge of retirement that a wheelchair is a good thing.
Points to be made:
I'm doing this whatever happens, but I'd prefer to do it with the support of the specialists
I'm prepared to fund a suitable wheelchair myself (ouch!), because the chance of getting the appropriate set-up via Wheelchair Services is likely nil.
I'm already walking better because of the pain clinic, this has nothing to do with 'giving up walking'
Walking better is just showing all the things I've given up doing and still can't do, such as going in to London
I tried out a chair for 5 days at Worldcon, 5*14 hour days, no negative effects, normally a single seven hour day, or less, on my feet is likely to put me in bed for the next day or more.
Trying out Kaberett's chair convinced me that I need a properly fitted solution on a rigid (or fold to rigid) chair, not just a cheap folding manual. It was possibly the most comfortable I've been in 25 years.
Getting a chair may be a necessary precursor to getting back to work.
My arms are increasingly an issue. I now have parasthesia in my left arm almost 50% of the time, my right shoulder has started to sublux regularly, using crutches may mean I'm walking, but stresses my arms and shoulders. A wheelchair gives options, creates the ability to alternate between crutches and chair and just basically creates a back-up plan.
Am I missing anything obvious? All suggestions gratefully received.
I have an appointment on Tuesday, which almost certainly means I'll get the older, somewhat lazy doctor with fixed ideas rather than the younger one with more modern, flexible attitudes (who mostly does Mondays and Fridays). The advantage is that she's known me for 25 years, the disadvantage is that she's known me through 25 years of misdiagnoses and I'm fairly certain she doesn't know what my actual diagnosis is. I'm not even certain my diagnosis is in my medical records as that came out of the Pain Clinic rather than rheumatology or ortho, I'll have to dig out the pain clinic letters and see what they said.
So, problem: convince an old-fashioned, lazy doctor on the verge of retirement that a wheelchair is a good thing.
Points to be made:
I'm doing this whatever happens, but I'd prefer to do it with the support of the specialists
I'm prepared to fund a suitable wheelchair myself (ouch!), because the chance of getting the appropriate set-up via Wheelchair Services is likely nil.
I'm already walking better because of the pain clinic, this has nothing to do with 'giving up walking'
Walking better is just showing all the things I've given up doing and still can't do, such as going in to London
I tried out a chair for 5 days at Worldcon, 5*14 hour days, no negative effects, normally a single seven hour day, or less, on my feet is likely to put me in bed for the next day or more.
Trying out Kaberett's chair convinced me that I need a properly fitted solution on a rigid (or fold to rigid) chair, not just a cheap folding manual. It was possibly the most comfortable I've been in 25 years.
Getting a chair may be a necessary precursor to getting back to work.
My arms are increasingly an issue. I now have parasthesia in my left arm almost 50% of the time, my right shoulder has started to sublux regularly, using crutches may mean I'm walking, but stresses my arms and shoulders. A wheelchair gives options, creates the ability to alternate between crutches and chair and just basically creates a back-up plan.
Am I missing anything obvious? All suggestions gratefully received.
no subject
Date: 2014-09-07 04:54 pm (UTC)2. WS should be willing to fund a decent rigid chair for you (and hopefully also seating). More on that at the time.
That's all off the top of my head.
no subject
Date: 2014-09-07 07:17 pm (UTC)I may be borrowing myself trouble that doesn't exist, but I've had to argue for every referral. In her, slight, defence I've always gotten them, but precedent...
no subject
Date: 2014-09-07 09:48 pm (UTC)1. Does the doctor walk everywhere, or do they take trains, taxis, cars? In addition to the excellent data you present re energy inputs, crutching is slow. Would the doctor arise at 4:45 am in order to walk to the clinic at 6:30 am?
2. There are many ways to exercise. Constrained movement with hesitation, panic, pain, or excessive caution is not "exercise." I've got the low-blood-pressure, fainting-when-standing business. Swimming is a joy. I can do things in water I could never do on land, without any anxiety.
My experience with wheelchair acquisition is in the US, so the following is probably totally irrelevant—but just in case:
Our helpful wheelchair fitters (called "seating & mobility specialists") are very few in number.
Here's their free trade journal.
Most users are fitted by the for-profit company from whom they're buying the chair. Insurance only pays for new devices, with endusers required to pay up to 20% of the cost. Insurance only pays for one device every so often (five years is common). Often people end up with expensive, ill-fitting devices whose market value has plummeted to 20% (if they're lucky). The result is a secondary market in wheelchairs, skewed cheap. The web has made finding, buying, and selling these chairs much more realistic.
Which is why I recommend that in the US, anyone's first wheelchair be used. Find one that's what you think you'd like and buy it. Use it for a year. Discover all its flaws. Then find a seating & mobility specialist to supply you with a device that best meets your long-term needs. Quite a few people of my acquaintance thought they'd do fine with a manual chair and after a year realized that power mobility made more sense.
I love chatting chairs so feel free to poke for more info (or complain about too much).
no subject
Date: 2014-09-07 11:48 pm (UTC)no subject
Date: 2014-09-09 04:55 pm (UTC)She did say 'Ah, but..' but I just kept on talking until she started nodding.
It's slightly scary that she can't manage a tick-box electronic form... She can't seem to get tick-boxes to autofill and I'm not sure if it's her, her computer set-up, or the form. I had to restrain myself from saying 'let me do it, it'll be quicker.' {rolls eyes}
She then asked me to get the receptionist to take a copy, but post the form myself. That got raised eyes from both me and the receptionist!
no subject
Date: 2014-09-10 09:13 pm (UTC)