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!

Monday, October 15, 2007

Catching Up

My Gastroenterologist finally found an antispasmodic that I can take with all my Parkinson's meds! I've been on it for several days now, and things have improved somewhat. Of course, I've also added the Enteric coated Peppermint Gel Caps, Turmeric, and Acidophilus.

Well, I went to see Dr. S Friday, and he said pretty much what I expected him to. Since I was taking 4 prescriptions that had just been added in the last two weeks, in addition to the OTC meds that I have added, he wouldn't even discuss dosing or changing meds. He wants me to come back in about 2 months, after I have had the Sleep Study with the TAP dental appliance in place.

I had printed out a nice neat list of all my meds, with the times I take them, and I asked him to take a look and see if he thought I had spread the meds appropriately. He didn't see anything wrong with it, which made me feel good. It took quite a bit of time to figure out how I could keep certain meds away from each other, and take into account such things as having to be on an empty stomach.

I asked for the form to get a handicap parking placard, too. It's time. On good days I won't need it, but the way I've been lately, I will definitely have to have it available. It is sad to see that check mark in the Permanent Disability box, though. We have dentist appointments tomorrow, so we'll take care of it then.

I have been using the trekking poles for the last week or so, since I've been so wobbly. They make all the difference in the world. I'm wobbly when I try to walk unassisted, but I can stride along at a good clip when I use the poles. I walked a mile this morning, with the poles, even though I'm holding onto furniture and walls to navigate in the house. We bought one adjustable pair some time ago, figuring we could get another pair later, if we thought they were doing any good. We'll buy another set tomorrow while we're out, too.

I've made 2 quarter turns on the TAP device now, but I couldn't feel the change when I turned the key. Each quarter turn pulls my lower jaw out about the distance of half the width of a dime. I'm still getting about 5 hours a night, but I am not sleepy when I get up around 2 or 3AM. Of course I go to bed around 9:00PM. I still get miserably sleepy in the afternoon, but I don't take a nap. I'm afraid if I get in that habit that I won't ever sleep any longer at knife.

I could feel a huge weight lift from me when I got the call the other day from my Gastro to tell me to order Bentyl, also called Dicyclomine. If I had been there in his office, I would have given him a huge hug!!

So, I continue to stay busy, trying this and trying that, hoping to get the best results possible toward the goal of living as "normal" a life as possible.

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6 Comments:

  • At 10/15/2007 6:41 PM , Blogger Marion said...

    Five hours a night! I think that must be a kind of record for you! What good news.

    Handicap Parking Placards are meant to be used to aid those of us who need them. I will one day require one myself...thanks for the warning about checking the permanent disability box. I will be sure to be aware of all those mixed feelings!

     
  • At 10/15/2007 8:15 PM , Blogger Dirty Butter said...

    I would like to add a few more hours to that 5, if I possibly can. I get so sleepy in the afternoon and early evening that I'm miserable.

    My Neuro gave me the signed permit application without so much as a blink. It isn't that simple for me. The ER trip really hit me hard that I will be getting worse, and the permit just cinches it.

     
  • At 10/25/2007 1:11 AM , Blogger Jackie said...

    Great to hear you get the 5 hours, hopefully that will increase.

    Turmeric and peppermint help me a lot so pleased you are trying them.

     
  • At 10/25/2007 5:56 AM , Blogger Dirty Butter said...

    I'm waking up much more rested these days, Jackie, thanks!

    I had to stop the Peppermint, though. My GERD is so bad that I could taste the menthol for hours and feel the cool in my stomach, along with the heartburn, even though I was careful to take the gel cap with the least possible amount of water. I guess I need double enteric coated, eh??

     
  • At 11/01/2007 4:55 PM , Blogger Janey Loree said...

    Wow DB! I need to not complain so much. I am sincerely thankful that you are finding a way to cope with these ailments. You are always in my prayers.

    I was reminding my mother that we met you over at Bidchaser two years ago! May God bless you intensely for the next two years!!!

     
  • At 11/01/2007 6:26 PM , Blogger Dirty Butter said...

    I am doing better, Janey Loree, but I do appreciate your prayers! It seems like a hundred years ago when we were trying to make BidChaser work, doesn't it???

     

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