All posts tagged Grrr

Musical chairs

A few people have asked me recently how I’m getting on with finding a wheelchair. The short answer is, terribly. I’ve been avoiding giving the long answer, because just talking about it makes me want to scream. But here goes.

Initially, things actually looked quite encouraging. Enable NZ happened to have a power-chair in store with the functions we figured I might need. I was able to try that, and a manual chair, within a couple of months. The manual chair is new and light and has a fancy honeycomb cushion. The power-chair goes up and down and back and forth and fast and slow and is very nifty. My technician estimates it’s probably worth about $18,000, which is pretty generous for public funding. But neither are worth much to me.

At the moment, when I use either of the chairs for a decent length of time, my pain levels shoot up. Not only is the pain more intense, but it spreads further into my head and neck, and it lasts for longer. I don’t know exactly why, but something about the positioning and support (or lack thereof) just doesn’t work for my body. I’ve explained this to my OT and physio on numerous occasions, but they always just make me feel like I’m being fussy. Like I’m asking for chorizo instead of mushrooms with my big breakfast. They don’t seem to understand that if the chairs cause additional pain, they don’t meet my needs, and they’re not worth using.

The DHB did order a new backrest and headrest for me to try, but when these weren’t successful, they weren’t willing to keep looking for other, more suitable products. When I make suggestions from my own research, the answer is always “that won’t work”; but no-one seems interested in finding a solution that will. There has been very little analysis of my posture or musculature, and zero thought about what might exist beyond this one power-chair, which has proved over and over to be unhelpful.

Having a wheelchair that supports me adequately would open a whole range of opportunities for me. It would mean that I could commit to social events and voluntary or paid work, because I’d know that I could sit for a while in any location. I’m sick of turning down offers and leaving early and desperately looking for walls to lean my head against. I’ve been in the system for eighteen months, and it feels like I’ve spent most of that time in the too-hard basket. The hospital should be trying harder and thinking much much smarter to find a solution.

Why can’t we be as good at serving complex health needs as we are at serving brunch?

Dragon

Hi how are you? It’s been a while.

I’ve been spending the last few months getting to know Dragon. Dragon and I were introduced by an excellent OT called Fran Smith. My equally excellent GP recommended Fran when I decided it wasn’t worth waiting for the DHB to deliver something useful (more grumbling on that note later).

Fran specialises in back-to-work assistance, and is very much focused on what her clients can do. So, for example, I can sit upright or partially reclined, in a comfortable chair, for a certain amount of time. Based on that, we have developed a “work” set up using my couch and various cushions. She also put me in touch with a clever optometrist from Tawa, who has designed an ungainly but effective device to hold a laptop or monitor in any position. It took us a while to figure out that typing was a no-go. Even with specialised keyboards, it seemed that it was too much to ask of my shoulders. Here’s where Dragon comes in.

Dragon is a piece of software which enables its user to input text through a microphone headset and look just like Christina Aguilera. It’s very clever. And very, very frustrating. When I first started using it, I felt like I was trying to use a computer in a different language. No matter how well I enunciated (N Nuncio Ted), every word seemed to play Chinese Whispers before it got to the page. My cursor seemed like a little kid trying to piss off its parents, doing the exact opposite of what I had requested. All the windows seemed haunted, popping up and disappearing at will. I wasn’t sure it was worth pursuing this relationship.

Six months later, Dragon and I are getting on all right. Mostly. We’ve come to a compromise: I use a mouse for pointing and clicking, and speak the rest. Dragon understands me a lot better now, and I’m learning to tolerate its stubborn nature. There are definitely times when it’s just easier to click out each letter with the on-screen keyboard. You gotta know how to pick your battles.

I hate it sometimes, but with Dragon I can finally see myself working again. I can actually imagine myself in an office, talking in monotone, repeating myself, spelling out words, annoying my colleagues. Contributing. Engaging. Being paid. For that, I’m willing to build all kinds of bridges.

Inward Bound

Sometimes I wish I had an ordinary garden-variety disability. One where the path has been trodden at least a few times ahead of me.

Recently I’ve been hoping I’d be able to attend an Outward Bound course designed for people with disabilities. The nurse encouraged me to apply, and tried her best to work out a way to support me through the 8-day program. Today, though, she called to concede that they just don’t have the equipment that would enable me to participate. She even admitted that she didn’t really know what that equipment would look like. I told her I’d call if I ever figure it out.

I suspected that I probably wouldn’t make it to Anakiwa, but I’m hugely disappointed. I liked the idea of going and proving to myself that I’m capable of anything, despite my limitations. Apparently this is what happens when you go on OB. Plus, it’s the story of pretty much any famous disabled person (would you just look at what they’ve achieved against the odds!). I’d like to be that girl, but first I need to figure out which equipment will enable me to spend less of my time horizontally, which is proving rather difficult.

I’m glad, though, that the nurse was pragmatic enough to see that pushing me through the course in pain would have been a miserable thing to do. Glad, too, that my absence from Outward Bound allows my presence at a certain supper-dance celebrating my sister-in-law’s thirtieth. Vintage dresses are really more my style than safety harnesses.

1 Comment

by Bron. on October 24, 2012 • Permalink

Posted in Uncategorized

Tagged Equipment, Grrr

Posted by Bron. on October 24, 2012

https://thisthingsgotlegs.wordpress.com/2012/10/24/inward-bound/

In hope of wheels

Because I was late today (because it took me three attempts to back down the driveway), my OT met me at the door of the hospital with a wheelchair. I don’t think that’s part and parcel of the Enable Wheelchair and Seating Outreach clinic, but it was a nice touch.

Enable NZ are contracted by the Ministry of Health to assess for and purchase disability equipment. These folk are going to put together an application (to MoH) for approval for me to trial two wheelchairs; one of which is powered, and one I’ll propel with my feet (shuffle shuffle). If my application is approved, Enable will source the chairs, which will take two or three months. If the chairs are a success, they’ll put in an application for funding to buy them. If that’s approved, I’ll have chair(s) by early next year.

Today was great. I came away feeling like someone with the right knowledge and authority is going to try, on my behalf, to get me what I need. Bonza. What’s frustrating is that it took ten months, and a lot of effort on my part, to get to this point. I know mine is a common story, and that others with far more urgent needs than mine have suffered worse, but I thought I’d share the circles I had to tread to make it this far.

1. Despite my symptoms and family history pointing towards FSH, it took three attempts (and three months) to persuade my GP that I should be referred to a neurologist.

2. Another month, (and $500) later, I had a clinical diagnosis, but no advice on how to manage my condition. When I asked about adaptive equipment, the neurologist said that my GP should organise an occupational therapist.

3. Back to the GP: she was unclear on the purpose of seeing an OT. But referred me to one when I insisted on it.

4. After spending two months on the waiting list, then seeing an OT three times over another month, she told me I was unlikely to meet the criteria for wheelchair funding. Could my Dad (who is involved with furniture design) or the Muscular Dystrophy Association help?

5. The MDA advised that my OT should apply for funding through Enable NZ. When I asked my OT to refer me to Enable, she said I need to be assessed by a different OT first. But I’d need to be patient, because that would take a few months.

6. Minor tantrum via email.

7. Another month, another OT, another assessment. I was finally referred to the wheelchair clinic. A month away.

It’s incredible that it’s taken this much time and energy just to get the start of the application process. And I still don’t know whether I’ll get funding – apparently I fall through somewhere in the gaps between the eligibility criteria. Sometimes it feels as though I’m not a valid invalid because my legs still work, because my invisibility cloak hides the fact that each step is still a struggle. But today I met two people who knew better, and, without question, accepted that a wheelchair could very possibly be the key for me to access more of life again. And for that I am truly grateful.

This thing's got legs