[stevem53]

Hi Everyone..The weather here has been unbelievable..Its been in the 70's the past few days, and will stay like that through most of the upcoming week..This has to be the warmest fall that I can recall..Ive been wearing tee shirts and have worn socks about 3 times this month

I went out to my YOPD support group this morning..We usually take the summer off from meetings, so the group hasnt met since June..There were about 6 new members there, and two were caretakers whos loved ones had been recently dx..and they were distraught to say the least..The message that I got from todays meeting was the importance of education of pd and acceptance..Bottom line is that Ive got this thing and there isnt anything I can do about it..So I have tried my best to make the best of it as long as I can..Stress and turmoil just makes my symptoms unmanageable..I can recall a few times where I felt like jumping right out of my skin..Not good..Having said that, I certainly can relate to going through the newness of dx..So many questions, and so few answers

I announced that I had resigned from PAN and was urged to remain as a board member of the local APDA, that they would find something else for me to do, like work on the new website..So I agreed..Ive thought that I might be a contact for new members seeking support..That is something Im comfortable with

I got out on the boat about 5 times last week, and took yesterday and today off to re-group..Im still feeling pretty good..Thank God!

How was your week?

[vlhperry]

Cold, Windy and rainy. We are on the edge of a front stretching from Minnesota to Texas. There have been tornadoes in some states, lots of thunderstorms. Today we had a nice break, but it is supposed to start up again tomorrow.

It has been a pretty boring week for me. My son called to let me know that he now has 2 new kittens he has added to his household. I would love to see them before they get to big. My grandson, born December of last year, is already walking. He is growing too fast.

Vicky

[gaykir]

We had a wonderful visit with our own "Harley" (Laura Dean). She was visiting her daughter here and we were able to steal her away for a day. What a charming gracious lady she is!! We brought her back to our home for lunch and then arranged a group event that afternoon with a contingent of local Parkies. Kevin was having a bad day but he just trooped through it without complaint!

Everyone was so excited to meet her and hear her read some of her poetry. My phone was ringing off the hook after the event with folks thanking me for the opportunity to meet her. We had expected Robert Smith (RLSmi) and his wife to join us but illness prevented them from making the trip.

Our local non profit group (DAPS) plans to feature Laura in the December Newletter. Anyone looking for a Christmas gift should consider a copy of Laura's book! It was a big hit and it's a wonderful read.

The friends you make over the years on this forum - even as it has progressed from one spot to another become cherished members of your extended family. If any of you have an opportunity to meet one another, I encourage you to take the opportunity!

Thanks Harley!! I hope you had fun with your musician friends too!

Gayle

[stevem53]

Originally Posted by gaykir

We had a wonderful visit with our own "Harley" (Laura Dean). She was visiting her daughter here and we were able to steal her away for a day. What a charming gracious lady she is!! We brought her back to our home for lunch and then arranged a group event that afternoon with a contingent of local Parkies. Kevin was having a bad day but he just trooped through it without complaint!

Everyone was so excited to meet her and hear her read some of her poetry. My phone was ringing off the hook after the event with folks thanking me for the opportunity to meet her. We had expected Robert Smith (RLSmi) and his wife to join us but illness prevented them from making the trip.

Our local non profit group (DAPS) plans to feature Laura in the December Newletter. Anyone looking for a Christmas gift should consider a copy of Laura's book! It was a big hit and it's a wonderful read.

The friends you make over the years on this forum - even as it has progressed from one spot to another become cherished members of your extended family. If any of you have an opportunity to meet one another, I encourage you to take the opportunity!

Thanks Harley!! I hope you had fun with your musician friends too!

Gayle

Thanks for sharing that with us Gayle..It certainly is special meeting people from the forum

[RLSmi]

Missing the visit with Harley. Sue is only just now getting over the "bug". I was really looking forward to meeting Kevin and Gayle, too.
I bought "Laura from Within" (Harley's book) and read it all in one evening. Wonderful!
We are looking forward to a big cool-down this week with a cold front. I think we will miss the rough weather, but we need the rain.

The neurology department at my university held its annual Parkinson's symposium Friday afternoon. It is organized by the head of the movement disorder section each year to showcase Parkinsons-related research by local faculty and one nationally known specialist from out of town. The great majority of the some 100 or so atendees are patients of the MD specialist The most memorable presentation, entitled "My Parkinsons and Aging," was made by a local 85-year old patient who was diagnosed at age 72. He was a local pioneer in television broadcasting. He spoke eloquently but candidly of his trials with the da___d disease. What a hero! A nice reception is also provided.

Everyone have a great week!

Robert

[gaykir]

We missed you Robert. I forgot to say that Terry (Proudest Mama) also called but the trec up from Houston and back would probably have done her in!

[jcitron]

Hi everyone!

I'm glad to hear that everyone here is doing well.

I've been busy these last few weeks, but wanted to stop by and say hello. I started back on my BSIT degree program online with the University of Phoenix, and this has eaten up a good hunk of my spare time. Do you know that Algebra is good for the brain? I haven't done this stuff in nearly 25 years so I could feel the neurons trying to rebuild and unclog the cobewebs. This is a 5-week super-intense course that really forces the information into the neurons. The biggest problem I have is trying not to exhaust myself by pushing too hard to get the homework done.

On the music front, my piano playing is sadly down to less than 4 days a month if I'm lucky. This is depressing to say the least. I have resigned to the fact that I can no longer play at the caliber that I did in the past, and take the good days when they come. I canceled a paying gig that I was asked to do. I didn't want to make an ***** out of my self in front of everyone. There's nothing like having the hands flip out randomly during a performance.

The increased Sinemet from 4-1/2 to 6-12 per day I'm taking is helping tremendously though. I can actually get out of a chair without assistance. This is unlike how it was about a month ago. I also no longer feel ill in the morning, or stiff until 2:00 in the afternoon. I still, however, have the tremor, which doesn't stay away as much anymore and is more pronounced. Perhaps this is because I could control it more before. Now ony if the piano playing would come back. That's when everything would be perfect.

I had a visit with my PCP this past Tuesday. He got the results from my neurologist at the Lahey Clinic. The diagnosis has been downgraded from an atypical form of Parkinson's to Parkinson's Disease with dyskinesia and spaticity. This comes as both a shock and relief because I felt this is what it was all along. It's funny how your own instincts can tell you something is wrong long before the doctors come to the same conclusion.

My B-12 is also extremely low too at 177, which is even lower than it was before I started the shots and the pills! He has me taking 4 pills per day for the next 2-months, and if this doesn't show any improvement, he wants me to have both the pill and the shots to bring up my levels.

Anyway, I'll check in more often to see how every one is doing.

Take care all,

John