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Re:Pain with Parkinson's

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  • Martha
    ... you speak of for me and countless others. ... me upright and put medicine in my mouth. I could get round for a while then freeze up again. My left hand
    Message 1 of 35 , Feb 1, 2007
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      --- In plwp2@yahoogroups.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:
      >
      > God
      > DBS
      > American Standard Champion non-clogging toilet.
      >
      >
      > Original Message -----
      > From: Kelly
      > To: plwp2@yahoogroups.com
      > 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
      off.
      >
      > 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
      joint tender.
      >
      > 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
      something better.
      >
      > 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.
      >
      > Kelly
      >
      dear kelly;you are so right.may God bless you.martha
    • Jenny Webster
      Kelly, the meds and the busy legs caused me an 85 lb weight loss. Be careful it gets hard to keep the weight up after a while. You need your strength so force
      Message 35 of 35 , Feb 3, 2007
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        Kelly, the meds and the busy legs caused me an 85 lb weight loss. Be careful it gets hard to keep the weight up after a while. You need your strength so force yourself to eat small meals more often. You will pay a dear price for loosing too much too fast; I sure have. Keeping warm is one of my daily issues too. Good luck and I sure hope everything goes well for you.
         
        ----- Original Message -----
        From: Kelly
        Sent: Friday, February 02, 2007 7:58 PM
        Subject: [PLWP2] Re: Pain with Parkinson's

        Hi, Diane,
         
        Just finished reading your emil to Debbie and thought your idea about satin sheets great. (and love your humor) Since I have lost so much weight from my constant tremour have zero tolerance to coldness, so have flannel sheets on my bed. Maybe I should wear a satin nitie? (can't stand pj's)
         
        I was very interested in your sentence about going off Mirapex for a month. I feel my meds don't help me, but a neighbor said she can tell when I forget to take them. (take 25/100mg Sinemet 3x/day and Mirapex 0.5mg 3x/day) Doctor wrote the script and pharmacy filled but no one ever told me How to take them, together, apart or it does not matter?
         
        Kelly 

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