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!

Wednesday, October 17, 2007

Took a Rest from TAP

We went to the dentist yesterday for our regular cleaning appointments, and I took the TAP paraphernalia with me. I have noticed a faint clicking sound when I talk, which made me think it needed some type of adjustment. He agreed, and was able to add a little blob of something to the back surface of the mouth piece. It is supposed to equalize the pressure on my jaws for holding my mouth open for all that time. I had the denture parts in and out of my mouth several times before we left.

But when I tried to get them on last night, I couldn't get the dental appliance on my teeth. After considerable finagleing, I managed to get the upper and lower part in, but then I had trouble latching the hook in front to connect the front and bottom sections together. So I took them back out and checked to see what the setting was marked on the device. That's when I knew something was wrong with it, as it was way too high a setting for me. I changed the length of the mouth gap with the key that is provided until it felt comfortable again.

But once I had it in my mouth, I realized that some of the material he had used to build up the back of my jaw a little bit had landed in the wrong place, too. This has left a rough spot right where my tongue can get to it. Now, you may not be like I am, but if I have a sore or anything else that is a temporary visitor in my mouth, my tongue will rub on it compulsively.

That rough spot sent my tongue into obsessive orbit, every time I realized I was touching it. So, I didn't sleep in the TAP last night, and I'll have to see Dr. Deep today to get it smoothed out.

I used the cane all day yesterday, as was extremely wobbly, nervous feeling, and generally feeling like I have Parkinson's, but managed to do everything that I wanted to do for the day. We did get the handicap placards, which will be perfect for those days when I have trouble moving, even with the cane.

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10 Comments:

  • At 10/18/2007 4:47 PM , Blogger Marion said...

    Wow, that device sounds complicated...kudos to you for continuing on with it. Are you saying your mouth has to remain open the whole time you're asleep? I would think your mouth would dry out something terrible, if I'm understanding this right. And I would think it could get painful?

    Take care, DB!

     
  • At 10/20/2007 12:39 AM , Blogger seb_gonzalez said...

    Dear Rosemary,

    I would like to welcome you and anyone interested in learning more about stem cell treatment for PD and its potential, to visit our website. There you can watch videos of real life patients' progress - before and after receiving treatment for their symptoms, as well as read blogs and personal accounts of their stay at our hospital. You can also e-mail me directly at sebastian@stemcellspuhua.com if you have any questions at all.

    www.stemcellspuhua.com

    Great blog btw!

    Best wishes,

    Sebastian

     
  • At 10/22/2007 10:51 AM , Blogger Dirty Butter said...

    Well, I did make it sound complicated, didn't I, Marion! It's not so bad, and no, my mouth stays closed all night. The top and bottom denture looking parts are connected to each other in the front.

    I'm hoping if nothing else that it will get rid of the mouth breathing habit, in case I do have to go back to the CPAP machine. But I plan you this working!!

    It's uncomfortable when I put it in, but when I wake up in the night it isn't bothering me at all.

     
  • At 10/22/2007 11:29 AM , Blogger Dirty Butter said...

    Very interesting site about your Chinese hospital. Thank you for the link, as someone might be interested in your procedures.

     
  • At 10/23/2007 12:40 PM , Anonymous Anonymous said...

    I'd like some more info about leg neuropathy.My husband has lost most of the sensation in his feet.
    We are so new at this and appreciate any info you might have to share.

     
  • At 10/23/2007 3:53 PM , Blogger Dirty Butter said...

    Hi anonymous! Has any type of diabetes been ruled out? That's the most common cause of peripheral neuropathies, other than repetitive injuries, such as Carpal Tunnel Syndrome. It can also be caused by the lack of certain key nutrients in the diet. What kind of doctor has your hubby seen?

    As for my own neuropathy, I have considerable weakness in my right leg, particularly. I'm fortunate that I have very little pain, and mostly tingles, rather than numbness.

     
  • At 10/25/2007 1:26 AM , Blogger Jackie said...

    Reminds me of the horrid contraption I had as a child at night to stop me breathing through my mouth and grinding my teeth. It always kept me awake and with me it didn't work as I still breathe through my mouth and grind my teeth. You appear to be having better results with yours as they must have vastly improved in the last 50 years.

     
  • At 10/25/2007 6:18 AM , Blogger Dirty Butter said...

    Oh My, Jackie!! What a horrible thing to put in a child's mouth!! I'm sure this is vastly improved over whatever torture rack they had you in that long ago. This is really not that bad. I was doing some more research yesterday and found out that it I do have to go back to CPAP, they can attach the mouth cover to the TAP and I would just have the nostril pillows, with NO straps or other bindings. That I could live with, if it comes to that. I'm glad I got the TAP, as it seems to be the best alternative for me.

     
  • At 10/29/2007 4:17 PM , Blogger dixie pixie said...

    what a marvelous job you. i hope you will keepthe site goiing. kkkkkkkKUDOS TOYOU dixie pixie

     
  • At 10/29/2007 4:30 PM , Blogger Dirty Butter said...

    Hi dixie pixie! Nice to have you here. I'm assuming you are the pixie from the Patients Like Me site.

    I look forward to seeing you here again soon.

     

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