Ten hours with new mouth appliance

From: sop
Sent: Monday, September 13, 2010 10:31 PM
To: jorosen@parkinsonsresource.org;

Subject: The Appliance

Hi Guys,

It’s only been 10 hours since I had the appliance placed in my mouth this morning.  Thought I’d just share a few initial reactions: It’s cumbersome.  It feels like you have a table in your mouth. I can not eat anything but the softest of foods. I tried eating a simple homemade sandwich – not happening. I went food shopping…yogurt, oatmeal, quiche…As a bonus to the appliance, I can see I’m going to lose weight!! The appliance is only worn on the bottom teeth. There is another one that is worn only at night. I’ll be trying that tonight for the first time. That appliance goes on my upper teeth. It is easy to put on and take off. I have to go once a week to Dr. to have it tightened. You are supposed to wear them 24/7. It is also a bit cumbersome to talk with it on… All this stuff is incidental.
So the big question: Do I feel anything different? The answer is YES. Yes I do! Like I said, it’s only been 10-11 hours. I didn’t feel any immediate change like I was expecting, like I saw in Charlene, who threw her cane to the side and walked. My changes were more subtle. When I picked Luke up from school (2:00), he commented that I was walking better. I did not notice this myself, but he did. For me the first real difference I noticed is that I NEVER took my last pill for the night (usually around 5:00) and at 6:00 when I am normally at my worst (incapable of normal movements without my meds at that hour of the day – especially after a busy day), I was FOLDING LAUNDRY. That is completely impossible for me to do without being fully medicated. All the fine motor skills to fold elude me with Parkinson’s. I folded 2 loads of laundry!!  AND made a simple dinner of quiche, soft rolls, and fruit (berries).

I am still moving around fairly well – med free! Don’t worry Dr. I will talk with you first, when/if this gets to the point that we can start reducing my meds.
I don’t know where this journey will lead, but today I got my laundry folded, did the food shopping, walked to Luke’s school to pick him up, took Luke to an audition, made dinner, cleaned the kitchen and wrote fairly legibly (off meds) in my journal. I do have to say I’m feeling more energetic.
Thanks for listening. It might not sound like much, but for me, folding that laundry was amazing!! I will keep you all in the loop with this thing. Time will tell. So far so good. Today surprised me, it didn’t work like I thought it would, but it did have a positive impact on the quality of my life today!! I can’t wait to see what tomorrow and next week and next month bring….

Peace, Love and Thanks,

Always,
Cheryl

Follow up message-
Sent: Monday, September 20, 2010 2:00 AM
Subject: Henry

Hi All.
• A girlfriend told me we should give the appliance a name, otherwise it sounds like we’re talking about a toaster. She suggested Henry. So here I am one week later (Trust me, you won’t be getting weekly updates, promise), to tell you a few sound bites of my experience with Henry:
• WHAT I NOTICED:
• can walk in sandals again without them slipping off my feet
• able to put my pants on without falling
• able to fold laundry
• penmanship showing signs of improvement
• balance when I bend down
• WHAT OTHERS HAVE TOLD ME:
• I speak more clearly on the phone, louder, and quicker
• my shoulders aren’t rounded inward, they’re pushed back and straighter
Now all this might not sound like much, but in my world, this is great stuff to be able to do again. It’s huge, for one week. I was so scared Henry wasn’t going to work for me.

I got a little zealous on day 5 and waited an extra hour longer then normally before taking my meds that was a bad move. By accident I went 15 minutes out and was fine, but I pushed the envelope going an hour.

Overall the benefits are subtle, real, quantifiable, and positive. I am so happy I found Henry. He has slow, undeniable healing properties. I don’t know why or how and “Personally my dear Scarlett, I don’t give a damn.” For the first time in 10 years I’m seeing some small steps that my Parkinson’s is reversing. I am truly amazed!!

As always,
Thanks for listening
With hugs for all of you,
Cheryl

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