Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Saturday, March 17, 2007

Hurky Jerky Girl

My DH saw me have a full body Parkinson's tremor for the first time today. We've been around each other so little for the last few months that it took him by surprise. We've been taking turns during the day staying with Daddy, and I've been up here every night since Thanksgiving, so we really have been just passing each other. I had described one of these episodes to the Neurologist last time, and DH heard me, but seeing it is quite another thing. I think it scared him, and I'm sorry for that. For several minutes I look like I'm doing a Michael J. Fox imitation!!

It's just that my Parkinson's meds can't keep up with the lack of sleep and the stress level I'm under right now. I don't want to make changes in my PD meds, if I can help it, until this time with Daddy is over. I'd rather put up with these unexpected episodes on an occasional basis than to over medicate myself.

Daddy is very stable right now. He's been asleep for several days now, totally unresponsive, except for some indication of pain when we are moving him to change the Depends. His urine output is low (it's been a week since he's had anything by mouth), so we aren't changing him but twice a day now. The rest of the time, he's sleeping peacefully. He's getting morphine every 4 hours, plus a suppository twice a day with Atavan, Haldol, Benedryl, and Resperidol in it. Talk about Chill Pill!!

It's such a blessing. If I could order up the way I would want to die, this would be it. I hope for his sake, and ours, that he continues this way to the end. DH's Mama and Pop died fairly peacefully, but my Mama had a slow agonizing death. I'm praying that Daddy will continue the way he is now, until the end.

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8 Comments:

  • At 3/18/2007 4:02 AM , Blogger RUTH said...

    It is good to hear that your Father is sleeping peacefully and I do understand your reluctance not to change your meds during these final precious times; but please be careful that you don't put yourself under too difficulty; I know your Daddy would not want to see you suffer more than you need to.
    Praying with you that he continues in his peaceful sleep and hoping that you will spare some time to sleep peacefully yourself.
    Sending love & hugs from all our family
    Rx

     
  • At 3/18/2007 8:33 AM , Blogger Dirty Butter said...

    He had another peaceful night. Both of our daughters were here yesterday, and younger DD brought our twin granddaughters with. They had lots of questions, were nervous at first, but soon took it all in stride.

    I got one good nap while they sat with him, and will try to do the same, while younger DD is still here. The girls made a pallet in the LR floor, and she slept in the twin bed in the room with Daddy and me. That worked out just fine.

    Just keep us in your prayers.

     
  • At 3/18/2007 9:58 AM , Blogger Sheila said...

    Rosemary, you are right not to change your medications now. Maybe the stress is causing the more severe tremors. I don't know much about what you are living with, just a layman's guess and I'm sure you get a lot of that well-meaning but not helpful.

    May your daddy continue his journey as peaceful as possible. My heart is heavy for you and your family.

     
  • At 3/18/2007 10:34 AM , Blogger Dirty Butter said...

    These really bad tremors don't happen too often, and I can adjust when I take the meds up to a point, so I have it in my system when I need it the most.

    Your continued prayers for his peaceful passing are most appreciated, Sheila.

     
  • At 3/19/2007 1:42 PM , Blogger Jackie said...

    I am glad to see your Dad is peaceful and they have his pain under control. Like Ruth says I feel you must be careful not to tax yourself too much you have to still go on living and making yourself ill will not help. Your Dad will understand.

    Is there no way you could possibly have a place near him where you can take a catnap if you tire while sitting with him?

    Hope the swelling in your arm is going down.

     
  • At 3/19/2007 2:21 PM , Blogger Dirty Butter said...

    I'm taking care of myself as best anybody could under these circumstances. We pulled the living room recliner back to the bedroom, so I'm comfortable, and can sleep in it. It's jut getting my body to let me sleep that's the problem. He's on every 3 hours now, so my mind isn't having a chance to settle before there is another round of activity.

    Our DD's are here, plus SIL and DH, so there are plenty to spell me - I just can't sleep!!

     
  • At 3/19/2007 2:37 PM , Blogger RUTH said...

    Sending a HUGE (((HUG)))
    Rx

     
  • At 3/19/2007 6:34 PM , Blogger Marion said...

    Sending a huge hug to you, DB. Your family are all in my prayers...I am so glad your daughters are there.

    I hope your Daddy continues to sleep as peacefully as possible. It sounds as if you are doing everything possible for yourself.

    I continue to hold you in my thoughts, DB.

     

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