Hi Everyone..Now that the weather has been breaking a bit, Ive been getting out more, and getting more physically active..Winters always seem to take a toll on me..I feel like a rusty chain on a sprocket..Ive been out in the yard on the good days, and cleaning out the cellar on the rainy days..Ive thrown away more junk than I imagined, and theres plenty more to go

I finally got around to scheduling my routine Upper Endoscopy, and Colonoscopy this past Thursday..I go in for the Endoscopy on Monday, and the Colonoscopy at the end of the month..I hadnt done it on schedule because I figured that Medicare wouldnt cover enough of it, and couldnt afford the balance untill now..Come to find out, the balance of both procedures combined will be about $300, which is less than I thought it would be

Things are happening in the R.I. pd community..Our new Community Outreach Coordinator has got a level of dedication, that is unparalelled..We have a few new support groups, and the existing groups are growing progressively..It was a rainy damp day today, and over 40 people showed up, and amongst them a couple of newcomers..We are going to have two symposiums this year, instead of one..Very encouraging!

I was planning on going to the Unity Walk in NYC this year, but I talked to my daughter tonight, and she is coming down from N Carolina on that weekend, so I wont be able to make it this year unless plans change

How was your week?

my week is going good. Tomorrow I pick up my daughter in Seattle from University of Washington. She is a freshman there, however she absolutely hates it. She is just not a big campus person, so she is transfering to a small university near home called Eastern Washington Univ in Cheney Washington. She will be living at home which is fine with me as she is wonderful company and a joy to be around (most of the time).
Work is going fine, but am tiring alot more frequently, parkinsons or after affects of cold? Thank goodness for couch in ladies room where I retreat for quick 15 min breaks.
I am going to studio today after work to do some glass work. This is always the highlite of my week. It is better than any antidepressant. I have been lampworking for 1.5 yrs now, Last week took a sculpture class and made some nice aquatic sculptures. Both my daughters want me to make them one, so I have something to practice when I get there.
I like your analogy to a rusty sprocket Stevem. You are always good with words. Hope the rest of your week goes well.














a

Can't complain, after nine years on "this" forum. Signs of future freezing sometimes, dyskinesia sometimes, but still crocheting, have taken up jewelry making (bead weaving, stringing, and wirework), and have reserved a table to sell stuff at the church bazaar in December, just for the fun of it. Got over the flu/bronchitis after four weeks, and now it wants to come back.

Beloved husband found this Gotta See: http://www.dothetest.co.uk/ Many lessons for life in it. If you've already seen it, don't tell, ok?

Jaye

I've had better weeks, but I can't complain too much. My new medication regimen is working nicely now that I worked out the timing. The change in the clocks two weeks a go through me for a loop. I'll stick to EST (Eastern Standard Time) rather than adjust my dose to the day light savings time we're in now. When I tried changing the time of my medications, I felt worse.

With my new regimen, my piano playing has come back somewhat! This is the best thing for me as it has lifted my spirits tremendously. I've been looking at pieces I haven't played or worked on in ages - like since 4 or 5 years ago! I'm back working on Chopin's Polonaise Fantasie in A-flat Major, his Revolutionary Etude, and Schumann's Fantasie in C-Major (heaven). These are all quite difficult pieces that I gave up on when I couldn't move properly.

The other good news is the nausea has left. It looks like I've gotten used to the new dosage and this was just a passing thing. Thank God because all I wanted to do is close the eyes and sit still.

Over the past few weeks, I've started, or perhaps I've just noticed it, movements of my limbs in relation to my dreams. This could be a medication problem, or hopefully not the sign of something worse. I dreamed of putting something in a plastic bag and woke up to arms moving in that manner. Another dream had me playing the piano. It was the Rondo to a Schubert piano sonata in D-major. I had been reading through the music earlier in the evening, and it was still in my head. My hands were going along with the piano that I was playing in my dreams. I woke up because I moved the blanket and it bumped my face.

My biggest complaint is my fatigue, which I can't seem to break. I am sooooo tired at night I'm a couch potato and go to bed dead. I've been sleeping most of the night, which is good but I get up exhausted. The past weekend I tried to do too much and ended taking Monday off. I didn't even get out of bed except to take my medication, and check into the forums for a little bit in the morning. I think I was up for about two hours total during the day.

Tuesday I felt better and went to work only to run out of steam again by the evening. Wednesday I dragged along. Today I over slept again and I'm totally exhausted. Hopefully I can make it to the weekend when I can sleep during the day. What a waste of a Saturday and Sunday especially with the nice spring weather coming.

My school work has proved to be one more thing to drag me down and I haven't logged into school for the past few nights, which will ruin my grade, but I have no energy to do so. At this point in time, I don't care whether I get a grade or not. I just want to plow through the classes and be done with it. This is no longer fun for me. It's not like I don't like learning something. It's that I am so exhausted going into the classes, that I can't enjoy the learning experience and everything becomes a chore. The extra typing can be tiresome because I find I'm making more typographic mistakes. I spend more time hitting backspace then I do typing the actual paper or question response. The other thing too is I find the information is going in one eye and out the other as though there's no intake. I end up rereading stuff over and over, but it's no use because I don't remember enough sometimes to answer the questions and end up rereading the articles and book again.

Anyway, after the next class, I go on my trip to the Midwest. I can't wait though hopefully the fatigue won't ruin that because I'm looking forward to this trip very much. Besides, I've already paid for it in full along with my plain fare, and there are no refunds on the trip because the space needs to be reserved.

John

I want to say hello everyone and apologize for being away from the forum for so long. I don't know how to describe this, but I get into states of mind where if I start thinking and reading about Parkinson's a lot, then I get totally focused on how "sick" I am. Whereas if I focus on my health, and feeling like a person who can contribute to society without apology, then I tend to define myself more that way.

But then I miss you all, which is bad. So hello all, and happy Spring.

I am doing well, all things considered. I have spent wonderful time in South America this past year, where I immediately feel 75 percent better, and have a hard time remembering to take all my pills...just being in this incredibly beautiful natural environment, and around good people in a healing frame of mind - well, it beats New York City, I have to say.

SO I'm now about 17 years in from my diagnosis. I have recently returned to really dancing again, and will be performing soon in a way that I haven't for at least ten years. I am back at my part-time job teaching dance in a private high school. I still take a lot of meds, and have many thoughts about these, but although I struggle with off periods at times, my on periods are so strong, that my neurologist claims I am "turning back the clock." He says, " give me some numbers to write down here, there's no symptoms for me to record here..." Heartening to hear, even though sometimes just walking can be daunting. But I'm finding that even when I can't walk so well, I can dance.

I have also realized that we are desparately alone with these drugs. They're so new, they don't know what they're really going to do over the long term, how they interact with other stuff, etc. Case in point, Neupro patch which I just titrated fully up to this week, thank you very much......I have been really focused on positive thinking, visualizing, etc. Read Wayne Dyer's books and found them very helpful. I have decided that I - excuse me, dear pharmaceuticals - yes, I am in charge here. The pills are here to help but the hell if they're going to run my life...

I take rhodiola and ginseng and L-carnitine and try and eat organic only, and I think all these things help. Plus every day loving my body, visualizing its healthiest state, considering myself a "normal" person, and not getting too impressed by my symptoms...

I look forward to catching up with you guys a little. Love to all.

I finished up my paperwork for SSDI this week and now get to do the same for a small private policy that will help until Uncle Georgie makes up his mind. Found the paper work a challenge as I was still not ready to admit to being handicapped and kept underplaying it. And as if that was not enough, today I made an appointment to see a good bankruptcy attorney to see if I am or not. Real estate has gone nuts in case you haven't noticed and it is going to get a lot worse before it gets better. I am going to be alright since my home is secure and I never wanted to be rich anyway. Takes time away from fishing.

So, something of a watershed. I got the Zandopa last week and am experimenting with it. Shows promise.

Unlike Fiona, I am immersed in PD research and continue to work on www.parkinsonsonline.org as a repository of all the stuff Anne Frobert and I have gathered and what it all means. It is a daunting task but I think I have a large part of it figured out but I have to make it understandable.

And so, life begins anew.....

Rick, god bless you for all you do. I'm glad that approaching this disease takes many different styles and personalities, which may change even with the same person at different times...but I think it's a great way to encourage each other with what we need on our journeys. I know for some, probably my style is a little bit in denial, or Pollyanna, or whatever - but I know other people that really relate to me on that level, and need to be that way also.


So what I can contribute here is to say, this is what's working for me, and I would be appreciative if anyone wants to talk about it with me if it would help them somehow...Meanwhile, I know that other people work on an opposite plane, and Rick, I love you for it, and am so grateful for the incredible work that you contribute to the community.

Hi Fiona, Its good to see you back here, and its great to hear that you are still dancing, and doing well

I'm talking to Mo on the phone, which I do frequently, and she has asked me to convey her greetings to all. My purpose is to help her overcome her inertia with regard to posting here. You have heard me talk about her beautiful writing, and I hope she'll appear here soon. Otherwise I am going to be less gentle...but all I'm trying to say is GO MO!!!!

Jaye

"Like Fiona. I have had Parkinson's for 16 years, and like Fiona, in my 20s I had extensive training in dance. Unfortunately I have other challenges which others do not have, which have made the search for answers difficult. Five years ago I had a spinal infection which led to rods in my spine and a hip replacement, followed by a pin in the other hip when it broke in a fall. My right foot is twisted and I have bowel and bladder issues due to a blocked lymphatic system resulting from the many surgeries. I have had the best rehab medicine can offer, and have been helped by several alternative therapies and continue to make progress. I have been stunned by the lack of knowledge of the finest medical community on the planet with regard to the lymphatic system.

"I am thankful to Jaye for helping me get over my inertia and posting for me. I hope topost by my own hand by hunt-and-peck in the future. I've missed you. I've been away too long.

"Things are going well. Hope you're all thriving. Have a lovely Easter!!!

"Namaste,
"Mo (Maureen)

"P.S. The thing that has really got me excited about the Parkinson's community again is that a major research center in Chicago is teaming up with a first-rate dance company to explore the relationship between Parkinson's and dance."

It is good to hear from you!..Dont be a stranger, and a lovely Easter to you too!