Tuesday, November 10, 2009

Wheelchair Seating Clinic

I have an appointment with the wheelchair seating place at the big elite medical center in mid-December. I love you, Dr. Rheumatologist! I think this process is new for him too, as most people just get a prescription and go to the vendor insurance recommends or directly to a vendor they know about (as I did before). So we'll see--at least getting an appropriate cushion that will fit and that relieves pain will help a lot. I have a full prescription rather than just a cushion prescription so we can do what's needed (a combination of my expertise about my body and a therapist's about chairs). He's also glad to help with forms for the service dogs. He did not realize I often cannot get out of bed by myself.

I have to see a pulmonologist before trying Enbrel (but that was the only specialist I didn't have!). Probably for the best since I have had a mild cough since September--don't want to give myself a b bad infection. Le sigh. No le torture wanted. I am having weird nail changes/finger pain due to arthritis, so dermatologist in January.

Worked it out with a few people who weren't talking to me and found out what some of their fears were with talking to me (something that never occurred to me about me looking like I needed help but not knowing if they should offer). Now I feel more comfortable at one of the kids' weekly activities.

Tired mama.

Advice? Things I should know or consider?


yanub said...

Wow, this rheumy is moving things along so well! Congratulations.

I guess I'm not surprised at the people who didn't want to be around you because they felt uncomfortable with whether or not you need help. How did you work it out with them?

FridaWrites said...

Yes--I think he is very willing to help. I sent him a note in advance outlining the troubles I had bureaucratically with getting appropriate seating, explaining what the problems with the current seating were. That way he had time to think about it in advance--I told him he could say no, but that I wanted to give full information about why I at least need a better cushion, if not custom seating, to get out longer and not have a big, lasting pain flare later.

With the one kids' activity, I got fed up and sent emails saying I didn't feel welcome, citing particular examples, and that I felt really upset about it. One person felt so bad he offered to resign--but I told him that no, I'd rather he didn't, that my kid really likes him, that I'd rather go forward with new understanding than have to start over in the same situation with someone else who also feels awkward. Monday night he gave me a hug (he asked first) and we talked for a while--I think we both feel a lot better now. And most people were so much nicer to me that I have to wonder if one of the other scouting leaders didn't say something to people (though my husband doesn't know about it if they did). There was still someone who made their kid move away from us, but oh well--maybe that kid tends to be hyper or something.

Despite what I write here, it takes me a long time to express what bothers me to people sometimes. I guess it depends on the situation, entirely.

william Peace said...

I have had mixed and largely negative experiences with wheelchair sitting clinics. The key to success is the listening skills of the experts involved--they can be a great resource. Sitting specialists love to have people sit straight and often forget about function. For instance, there is not a straight or symmetrical part of my body. I once was seated in a way that was deemed a great "success" but was in reality a disaster. Sure my sitting position was great but I could not function. The point here is to make your goals explicit and do not let the experts tell you what is best. Be open minded but firm on your expectations.

FridaWrites said...

Thanks so much, William. Excellent advice. Maybe I should make a list of what's most comfortable for me in every aspect I can think of, because if it's not, that's going to completely defeat the purpose and waste a lot of $. I should probably gear up and be strong-willed about it since I really need less pain to sit up and be out (example: I need my knees a little higher rather than lower than my hips).

FridaWrites said...

And yes, I'll definitely be open-minded to trying anything new/that I don't know about, but I will have to make sure it works for me. The way one PT told me to sit in an office chair is absolutely impossible for me for more than a minute or two--new research shows that my preferred way of sitting in an office chair (high back, reclined slightly) actually preserves the discs and spine and causes less pain.

Wheelchair Dancer said...

I'd ask them to seriously consider the ergonomics of a scooter versus the support and friendliness of a powerassisted chair or actual power chair.

To me, seating is not just about the cushion. It goes to all aspects of placement. I'd want them to consider things like the angle of your feet -- degrees of flexion??, and your legs (where is their natural position), support for your hips and lower back -- so key. And from there, I would go all the way up -- height of backrest. Places of support. freedom of movement for shoulders -- angles that shoulder and arms either strike the wheel or hit the handlebars of a scooter.

It's a complex problem that goes beyond a mere cushion -- though that should help. (Making sure that the cushion spreads and supports your legs appropriately).


FridaWrites said...

Excellent ideas--the angle of footrest would be crucial for preventing back pain--I can move my legs more freely in a wheelchair, but even in an office chair need a footrest at a particular angle. Slightly higher seatback, yes, but need to keep shoulders free.

My feeling is that they'll recommend a wheelchair (power assist--I'd have to try the newer kinds that are more reliable and do research or the power wheelchair). I'm okay with that if I can get along okay.

FridaWrites said...

I meant I can move my legs more freely on a scooter--i.e., I can rotate the seat and have a broader platform. With a wheelchair, I need to be really careful with choosing angle.

Elizabeth McClung said...

I think also having a list of what you do want - what is important to you, both pain wise but long term. Where is your degeneration going and what WILL be important. For me, I have this super expensive power chair but in going to the BCPA met someone whose power chair had a switch where they had attached small lights on the front (halogen) and red one on the back - with winter here, that is so useful - I have a $25,000 chair and no way to go around after 4:00 pm. So I don't know if there is a way to see people's chairs, or scooters and see what has been done. The level of back support is critical, as is the angle of dump (if there is one) - if air cushion, and you have problems more on one side, should you have the four compartment cushion Roho instead of the full cushion air Roho? I have found that a high quality velvet/microfibre soft surrounded strap around the front of my legs holding them to a base helped me not feel the pain in my back and also, not have to worry if my feet were protected, I just lined up my body and the legs were taken care of. This is just what worked for me, if having a stationary legs makes your muscles hurt, then that is worse than pointless.

William brings up a good point, I don't think any of them can put behind how you 'should' be sitting, wheeling, pushing, transfering, versus how you actually do. So you need to know how you do - how DO you get into and out of your chair, how would that be easier? And into your vehicle? With arthritis, that is important, I think. Congrats and good luck. I hope you get a great person.

FridaWrites said...

Elizabeth--I think you're very right--the scooter I picked out two years ago did not hurt me to sit in then but does now because of the continuing degeneration, not just inflammation, of the hips and SI.

Based on what you say, I think it's also important to make a full list of what works about what I have--such as the light on it near the ground does make it far easier on rough terrain/sidewalks at night, preventing accidents where a curb cut should exist but doesn't or where there's a crack in the ground.

I think there will be tradeoffs since Amigo is a very thoughtful scooter company (I still 100% feel that they are the best, only that my SI/hip hurt unbearably with almost anything--which isn't typical for most milder wheelie disabilities).

I think because of lumbar pain my legs/feet will need to be higher than most people find comfortable--unfortunately since the strap can make one more compact, less people climbing over your lap and feet.

Oh, gosh, I really do need to make a list. I am terrified of making a big error--a very realistic concern. It's not like with a custom chair you can say, oh, I guess I really did need x fixed angle to be increased. Some things can be changed (at cost), but some can't.