--- In email@example.com
, "ALICE CROOKER" <a.crooker@...> wrote:
> Kelly, Why won't you consider DBS? It ended all of that garbage
you speak of for me and countless others.
> I was uanble to get out of bed unaided. My husband had to get
me upright and put medicine in my mouth. I could get round for a
while then freeze up again. My left hand curled and hurt terribly.
> I hope they can find a way to help you and wish you were not so
opposed to DBS. It is a frightening surgery, but well worth it.
> The three things I am sold on since being diagnosed with PD in
order of importance are:
> American Standard Champion non-clogging toilet.
> Original Message -----
> From: Kelly
> To: firstname.lastname@example.org
> Sent: Tuesday, January 30, 2007 3:48 PM
> Subject: [PLWP2] Re:Pain with Parkinson's
> Hello, Debbie,
> I was DX'd with Parkinsons in 2005 but think I had it as early
as begining 2004 since I seemed to drag my right foot and finally
fell face down ending with a displaced elbow, broke the thing right
> Reading your letter was like looking at my own symptoms , some
long term (legs and feet nite-time cramps) one recent (right hand
day cramps) Also, like you I contributed it to the weather. Am
taking Mirapex 0.5mg 3x/d and Sinemet 25/100mg 3x/d, but I split
them into 1/2 so my body is getting a saturated dose. My feet are
totally numb, ankles are pain stabbed, leg calves ache, neck stiff
and just started waking with pain over right eye which goes away in
1/2 hour. Use a cane , hold in right hand, so now right shoulder
> Thank goodness, you wrote about the problems you have getting
out of bed. The first time it happened I thought I was paralized and
almost went into melt-down, but grabbing the mattress edge and
schooching until I could get both legs over, it was then easy to
drop legs and sit up. (a lever theory) Only have leg cramps at night
and only when bladder full (about 3am every morn)
> My tremours never stop, except when asleep or anesthetised.
They are quite violent when coming off meds and tame down a little
on meds. Neurologist says am now in stage two of the disease, and
have lost the total of 35# since being diagnosed. Sometimes feel am
losing the battle and despair of ever getting this disease under
control. Statistics show some people with PD never get helped with
drugs, I must be one of them, but refuse to consider DBS. Mirapex
& Sinemet together is my last hope unless they come out with
> There is one thing that helps: take a hot bath, it seems to help
my cramps as muscles relax when submersed in hot water up to my neck.
> Everyone is affected by PD differently. I hope I may have helped
you by showing my symptoms and what I do to stay in control.
> I try to behave the way I did when was PD free, ie: Put on my
new Medical ID Bracelet myself. Tiny clasp only took me 60 minutes
of fumbling and a deliberate, stubborn will. Ever try pounding a
nail in the wall, another different set of rules I had to work
around, finally used needle nose pliers to hold nail.
> I beleive the key to PD is to keep busy with unrelated subjects.
dear kelly;you are so right.may God bless you.martha