karen - fall; Bill - PT and ST save life in movement disorder patients; Zac - assumtions do hurt terribly; Maggie - ALL the medications currently on the market for urinary frequency, urgency and incontinence should NEVER be prescribed for or taken by

[Guest guest]

; rest and stretching, gently stretching, in a warm (not hot) bath if

you can. PT should only be used after the injury has been thoroughly

assessed (I have over 20 years experience as a dance therapist) - that

includes an Xray. After that, should inflamation be the problem, nothing

beats ASA and topical application of witch hazel or horse linement at the

site of the injury. Once the inflamation goes down, then, and only then,

should you start and kind of PT. Stretching lightly is just to keep the

bloodflow going and you can do stretches lying down. If you need more

specific description of how to stretch, email me. Later on I'd be happy to

share my favourite Tai-Chi exercise for keeping the tailbone properly

alligned.

Bill - could not agree more that losing PT and ST is devastating. As you

may remember mine was stopped because my son has a mental illness and they

find that makes my home an unsafe environment for homecare. I've not been

doing so well lately, that little bit of help and human contact was vital,

and to withdraw it has left me much worse of and the outlook for my future

is terrifyingly uncertain. I have no one but myself as caregiver and as my

health deteriorates, the the healthcare system cuts programs willy-nilly,

someone has made a decision that can end my life much before it needed to

and leaving me with not much quality for that already abbreviated period of

time. And that is just me, there must be at least a million losing life at

the stroke of an administrator's pen. How do these people sleep at night?

As for me, my son is doing much better, that's a bright point.

I had a rough night, taking Buscopan 10 mg 3 x day, also taking milk of

magnesia (trying to get rid of suspected impaction). Last night I had to

change my jammies and sheets twice. Add to that that I have no laundry

facilities (or homecare), so I washed the lot out in my tub, twice. Kept

having to lie on the floor, so dizzy. Drank lots of water, kep exploding.

For all the mess it was not really productive. Taking a break - no

buscopan or milk of magnesia today. I feel wretched, and angry that there

is no one to share the burden with.

Zac, you're not the first to be put off by Ray's lack of tact when it comes

particularly to diagnosis. Bad enough to go through years of doctors

telling you that it's in your head, or too non-specific to be meaningful.

I've seen bags of those. Then once you've come to terms with something as

ominous, chronic, progressive and terminal as MSA, you don't need to do

another round of what if. As a patient, I resent it. I resent that it is

taken for granted that I want this diagnosis so much I would stop looking

for answers and solutions that are less terminal. Every appointment with

my doctor I bring him a few more what if's, some are followed up, some are

explained to me so I understand why I am excluded. I've also been told

over more than aa decade that it could be MSA except - you are a woman - or

you are too young - at 45 I was apparently old enough to at least have MSA

considered. I too have autonomic problems dating back to my youth, each

symptom was given its own individual diagnosis - now finally a few doctors

have bothered to connect the dots, before that the symptoms were rarely

treated and I've done my share of unnecesary suffering as a result.

Fortunately I had parent who taught me before age five to trust myself to

know what was and what was not true for me, and to accept nothing less than

respect and aknowledgement. I respect what Ray has gone through in taking

care of his wife, I do feel he lack capacity at times to acknowledge out

differences. Lolah, in England is 19 with a diagnosis of MSA, despite

having found a tumour on her pituitary, the MSA diagnosis still stands in

her case and she is being treated vigorously for it. It may reflect a new

generation of physicians who are not so quick to accept statistics absolute

in the process of making a diagnosis. Since the testing is non-specific

diagnosis relies heavily on reported symptoms being taken seriously enough

to have those dots connected. In my case (and those of others), physicians

did not bother to take our histories into account. As a rule I was treated

only for the specific complaint I brought to the office that day. When you

are busy and find ways to manage with symptoms you do not bring them up at

appointments each time, a doctor who takes the time to find out what a

snapshot of your total health looks like would make a diagnosis sooner, few

do. Some symptoms (constipations, tinnitus, motility, headache, neck pain

etc) become so much a part of you, you'd rarely think to bring it up when

you are having stitches taken out. In the meantime, we all hope, in the

end we have something less terminal, certainly I do. Do think about

donating your brain to a study specific to MSA, mine is going to the Mayo

(paperwork is all done). We need answers. I have no overt PD symptoms at

all, this seems to happen mostly to those diagnosed at a younger age

(judging by posts of this group). From what I have read no obvious PD

symptoms may ever emerge. Just depends how your self destructing brain is

programmed. My symptoms started young, never let up, I managed to work

full time, raise two kids until I hit the wall at age 45, no amount of

resolve could put me back to work, I watched all my goals fade from view.

I've adjusted (reluctantly) to not making plans and commitments, but every

time someone doubt what I go through it destroys a little more of my

already wounded dignity. There is no context in life which benefits from

assumptions, I do not assume what you are going though, but it may be

useful to share and compare and aknowledge with the rest of us.

Maggie: I take Duvoid 30 mg 3x day to improve bladder strength, this,

theoretically allows me to more fully empty my bladder, and for me it works

very well. The OH does take a hit, but in my case it was minor, benfits

outweigh the side effects. I have not taken any other medications because

they have an even worse record for worsening OH. It's all a lot of

weighing risks and benefits. I take no meds to improve OH because the

additional blood volume could aggrevate heart and kidney problems. I just

drink a lot of water and try to take measures to be safe, and overall

healthy enough to withstand a fall here and there.

someone mentioned hypothermia. I'm still not convinced that a lowered body

temp is a bad thing. I think perhaps as with MS it may improve functioning

to be a little colder (not comfy though.) It improves nerve conductivity.

Perhaps it even slows the disease process. It may also not be so awfull to

be able to eat less. Rats severly calorie restricted actually live twice

as long. engaging the body's own survival mechanisms may be waht needs to

happen. People with low BP live longer. Being a little cold is a good

reason to keep moving, that too is beneficial. I don't allow myself to be

warm until I am ready to go to bed, just my hunch that this may be helpful.

I only dress over the larger muscles and to preserve core temperature. In

some ways I am fortnate that I cannot feel cold, don't shiver. If I allow

myself to become warm all of me becomes very slow, uncoordinated and all my

pains achhes and spasms worsen. No more time on hot beaches for me (sucks).

aletta mes, vancouver, bc canada

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Site: http://www.aletta.0catch.com