Just an update

[Lucy]

Hi friends!

Have just been jumping in here once in a while lately. Good to see so many of you are still around on the board. Always miss all-a-ya'll!

I'm still taking care of my mother who is paralyzed with Parkinsons now.
She has scoliosis, side to side, as well as kyphosis, front to back, that is worsening fairly rapidly, or so it seems to me. For this reason, I'm trying to get her into the the wheelchair clinic at T.I.R.R., just a few miles from here, and one of the top ranked rehab hospitals in the USA.

I'm hoping that the scheduler will call me in the morning so that I can make the appointment, and that I'll be able to make if for one of the best days for my sister to be able to help me. Just called to ask her new doc to fax the order over for me on Friday, so that might be a bit unrealistic.

Reason for the hurry is not just due to her worsening condition, but also, because hurricane season is breathing down our throats. I really would love to have her new chair and supports for her spine before a potential evacuation, but the whole process is supposed to take about a month, so... Two weeks of it is the time allowed to get the chair after it's ordered. Guess the first two weeks has to do with the maximum time to get it approved by insurances and maybe from the time you actually make the appointment til the chair is ordered is the first two weeks. Anyway, I'm hoping everything will go super fast.

The chair that we believe we will get is the "tilt-in-space" type. This is along the lines of the zero-gravity chairs you may be familar with. Mother has a tall backed chair with a head rest that will recline already, but there is still pressure in the same spot/s on her bottom. With the tilt of the new chair, the point of most pressure will be rotated front to back, so that she can sit up longer without the fear of pressure ulcers forming.

Also, I think we'll probably end up with a custom-made contoured back support which should help alot in supporting her back, and some of the supports will come around to prevent her from listing to one side so much with the scoliosis.

At TIRR's wheelchair clinic, she'll be evaluated by THE BEST OT's and PT's who will do all kinds of measurements of her, the rampvan, and I'm not sure how, but they even evaluate her living space here. I'm hoping that this won't be necessary since the new chair's metriculating parts will fall more under it's basic frame's footprint, and thus, require less space. Her present chair is really long, and I have some lifting to do to get her into her van or turn corners in the house, but that part's not all that hard, actually. I just don't think it's good for the chair, and it's more time consuming when we're in a hurry to do what we have to do to elevate her legs for a trip (long story.) I don't think that will be a problem with this new chair.

Also, it's been crash tested, and doesn't have that cross piece underneath like an ordinary wheelchair, so it doesn't collapse like that if there's an accident. Also, it has attachments for four of the tie-downs inside the van to put on her wheelchair, so it should be very stable in that way.

I've been rigging up something to put between the added head piece on the current chair to keep her head from bobbing from side to side in the van, but we're going to see about getting another more supportive headrest attached to the new chair so we shouldn't have to do that, and it will provide more support in the occipital area. Mother has another problem that looks like "bamboo spine" on X-ray. That's probably why she has the pain in her neck in the first place. I don't think this is related to Parkinsons, but it complicates things. Thankfully, it doesn't seem to hurt her except when her head isn't supported when we get her in and out of bed, or she hits a bump in the road, so I'm hoping that this will prevent alot of that on the rough spots in the road.

We've all been wearing face masks most of last week to keep Mother from getting this little virus thingie we've had. Really don't think she's gotten it, so that's a blessing, but her mental alertness continues to decline, but then, it's a very back and forth disease. Tomorrow, she may be back to making more complete sentences.

She's only on a medication now to keep her BP up when she first sits up, so that her potty experience won't cause her BP to drop too much. After that, it seems to stay elevated pretty well. We have recently added a half of the minimum dose of Ritalin which probably isn't enough, but sometimes it seems to help her to stay alert during the day and sleep better at night. We may have to elevate that to the full 5 mg, but I'm very cautious with her about medications.

I'm one of those here who has symptoms similar to R.A. or else it possibly is R.A. All I know is that it's a whoooole lot better than the pain I had before the gf diet, etc. In a recent foot and ankle x-ray, I once again had edema going up into my leg, and am schedule to see an orthopedic doc for another problem under my ankle bone soon, so I will ask him about the swelling, and ask if my bone x-rays show any deterioration of my joints. Maybe it's R.A. that's causing my osteoporosis??? I'm not on any treatments for it, so it's not steroids. Any thoughts on that from R.A. suffers? Anyone know of a good board for R.A. suffers? I'm not officially diagnosed, just have the symptoms, but not too bad.

Yours, Luce

[starfire]

Luce, I am always stunned when I read about all the things you have to contend with on a daily basis. What a wonderful, dedicated daughter you are.

I hope the process for getting the chair moves very quickly for you and your Mom.

Love, Shirley

[Polly]

Always good to hear from you, Luce. I echo what Shirley says.

Let's hope it's a mild hurricane season with no evacuations.

Love,

Polly