[stevem53]

Hi Everyone..It has finally stopped raining!..It almost seems weird not having a wet windshield

We went and got a recreational crab license at the Wal Mart here, and went out to this pier and set a crab pot off the end of it looking to catch either dungeness or rock crabs..Some things never change....Anyway, we caught 3 good sized rock crabs, atleast I think thats what they were..I should know these things, but using the regulation booklet that came with the license that has pictures of the crabs, the only way it seems to tell the two apart is by the claws it..Ahhh, whuteva..

Laura has decided on the Cleveland Clinic to try to get to the bottom of the misplaced DBS wire, so we are waiting on them for a date to get in there..Looking for answers to a number of questions..She turned hte DBS off about 5 or 6 days ago, and is doing alot better than she was doing with the damned thing on..We went mushroom hunting a few days ago, and we walked about 2 miles, most of it through the woods with no established trail, and Laura did it without taking a break..Her offs are nowhere near as bad as they were with the thing turned on..She has encphelitis induced pd according to her original dx 24 yrs ago, and she has IMO some unique symptoms not common of us garden variety parkies.Her gait is definately different, and she, after 24 years, is on half the daily medication that I am on..she has the same coordination in both hands which enables her to be able to the piano, and type using both hands..I type with two fingers on my left hand..cant type with my right hand at all..They say we are all different, but Laura's symptoms are not like any Ive seen in all the other parkies Ive encountered thus far..I certainly do pray that someone at the Cleveland Clinic can finally provide her with some answers

On the lighter side..Laura and I were taling the other day..She was sitting on the couch, and I was sitting in the chair..We both got up at the same time, and both fell back into the couch and chair at the same time, and busted out laughing..Ya has to be there..

How was your week?

[jcitron]

Hi Steve,

I'm glad you and Laura are having a great time together. This makes me very happy for the both of you.

We've had just as much rain back here in New England. It has been quite warm up until today. It was in the mid-60's yesterday with warm drizzle and high humidity all day. Today it's in the 40's and feels like it'll snow. The sun peaked out briefly this morning then went in to stay warm.

My last week was busy, but the good thing was I was out of school. Sadly I go back on Tuesday, but that will end soon because of the holidays and I'll get some extra time off for Thanksgiving and Christmas. I need the vacation badly because I get so fatigued from it.

Overall I'm doing okay. My medication is balanced and I'm able to get around pretty well except for the mornings when my legs feel like they're stuck to the floor and my arms are very stiff. After my second dose of Sinemet (11:30), I'm doing pretty well for the rest of the day. We are all different when it comes to PD. I don't fit the muold either. My hand coordination varies, but it's good most of the time, but my legs are spastic and my gait is weird, and I have very little external tremor that comes and goes. This is what makes this so difficult to treat because of the variety. I can say though, when I am off I am definitely stiff and slow, and when I'm on I feel "normal" like I've never had anything wrong. So there's definitely a dopamine uptake problem somewhere.

Anyway, take care and keep having fun.

John

[KC Tower]

Hope all is going well for everyone in love & life.

Thought it might be time to post an update since I havent said much lately.

I cant believe that I am 60 and it is almost 6 years since I was diagnosed (New Years Eve is the anniversary) and started on Braintalk and now Neurotalk - I guess I talk more in person since it has taken this long to get to 50 messages. I can say that I read every message, paying more attention to some messages than others but ignoring no one.

Personally I am having lots of fun with various hobbies and worrying about getting our 2 young adults (22 18-drives) started. Would like to buy a small car but cant justify having another car sit around - perhaps after my wife stops working so the current Odyssey and Escape would be allocated to wife and daughter. Aside from house improvements my biggest current project is converting about 30 tapes of daughters dance shows to DVD with chapters edits etc.

For the first five years from diagnosis I went unmedicated with no problems but at that point the tremor started to become invasive at times. Neuro (head honcho at UBC teaching hospital) prescribed PMS-Pramipexole(Requip) of 2 * 0.25 - 3 times daily.

Seems more concerned about stiffness but for me it is tremor that is the irritation although repetetive movements on the right side are slower. Neuro tests are the worst thing performance wise. I did titrate up to the prescribed dosage but felt better at lower and have settled on half pills 4 -6 times a day. Stiffness would probably be helped at higher dose but it seemed to start having a detrimental effect on tremor -again not much different though.

Has the COQ10 300mg(from almost day 1) a day helped - I dont Know; but nothing from meds to curcumin to beans etc seems to make a huge difference. I can take or leave the meds, vitamins, supplements, sleep or not, diet - see food or not and nothing seems to make a consistent
difference. I have good and bad days/times but there is not really much difference in them. Possibly I am just accepting but all things considered think I am doing pretty well. Still run on the treadmill 5 -15 miles per week with no ill effects - just not very fast. Have to expand the program to include arm and core exercise!

I see the neuro in a April and can try just about any suggestions people might have for improved meds via my GP.

I steadfastly aviod religion and depression amongst other things and maintain a pretty good mood but don't let the good mood confuse you ... the situation has me ****** :-).

As my Dad usd to say and we put in his obit -"One day at a time, because today is the the only damned day you've got."

take care ,,, ken

[Colinjc]

Good to hear that you are having fun. Just thought I would let you know that I was diagnosed on the same day as you: December 31, 2002. Although I probably beat you by a few hours as I was diagnosed in Australia. I didn't say anything to my family immediately and remember going on to a family new years eve celebration in a fairly bemused state. I'm sure we all remember the day we were diagnosed very clearly.

We also have in common CoQ10 as I have been taking 1200 per day for the last 5 years. I'm not sure if that is the reason for me doing reasonably well so far as it's a bit hard to tell from a sample of one. I would like to stop taking it because of its' cost but am waiting for a report saying that it probably isn't effective.

50 posts sounds pretty good to me. I posted a few times on the old braintalk forum under another name when I was first diagnosed but I have to admit that I am really just a lurker. I do check this site fairly frequently and admire the energy and commitment of Steve and others who contribute on a regular basis.

Colin

[harley]

well, today we get on the plane to head out to ohio. all of my records are transfered to the cleveland clinic, and i have a place to stay while i await an appt to get in. it has been a huge roller coaster ride both emotionally and physically for me. steve has been my rock and i know it has been very hard for him as i go through so many changes. it is not a thing i am used to... support and dedication without strings atatched. but, here he is. not asking for anything from me in return. just being here helping, caring, and wanting the best for me. the unfamiliar is scary, yet just what i need.

this will be the last time i sit in this chair of what i feel has been a home to me for 10 years. after we close the door to this house, a new book will begin as the old one closes. things must change, it is in the air. it is time. and i am ready. i have no idea what will happen after today. i dont know what they will come up with in cleveland, nor the course of my journey after that. all i know is that God has something in mind for me and i am giving it all to Him and that is sufficient.

steve will keep you guys updated on my situation if i cant. thank you for your prayers. you guys have been a blessing to me. He does listen. thank you.

The Mountain

Standing beside the cold cinders
that once charred my thoughts,
I see a flame struggle to survive.
There is no air within my battered soul
To fuel it's desire to live.
Defeated, it pops in rebellion and fades away
Leaving me alone in silence.

I wander over to stir my remnants
and find nothing recognizable to claim.
The years I lived lay as dust,
Softly subdued upon the earth.
There is no need to mourn my loss
The emptiness holds no feeling

A gentle wind begins to waft round me.
Clearing the air of my old debris
to prepare the ground for sanctification.
I stand in awe as I watch His mighty hand
gathering my scattered ashes
to build a magnificent mountain.

The skies send a light to illuminate a cross
rising upon the crest of the hill.
My Lord is giving His life
for the one I have already spent.
The nails pounding into His omnipotence
send a flowing river of His blood
down the slope to where my feet rest.

I drop to my knees in humility
as I witness the immenseness of His sacrifice.
All of the questions I have asked in turmoil
have vanished in the light of His answer.
As the nourishment of His love heals my wounds,
His grace shows me my purpose.
I will search no longer.

The Lord has laid my path to heaven
and I will climb the mountain He built for me.
As my legs grow weary and cause me to stumble,
His love will strengthen my resilience
and guide me to the top of the hill
where I will enter His almighty gate.

©Laura J Dean

[jcitron]

Good luck Laura. I'll keep you in my prayers. You'll do fine I'm sure the CC is a great place to go for something like this.

Ken: I know what you mean about being ******. That's exactly how I feel. Musically I was at a point where I was actually improving. I was playing things more difficult than before and my technique had become phenomonal. I had developed a very accurate and controlled touch that allowed great expression at all levels of dynamics, yet my playing was crystal clear. My long time friend and fomer piano teacher whose now close to 90, said to me that she couldn't believe how well I sounded. She even recommended that I contact Julliard where she studied even though I've been pursuing a technical career instead.

Then slam, dunk and roll. I got hit in 2003/2004 and everything slipped to where it is now. When I play well now on a good day, it's never at the level I had before, which is very frustrating, so I've accepted the fact that I will never be there where I was again and cringe when I make the major mistakes.

I try to keep my spirits up by staying busy with work (still full-time cuz I need the benefits), online classes, and my hobbies. I have too much to do in so little time. This PD thing is just one of the many things that seem to get in the way at the most inopportune time when I'm trying to do things that I like.

John

[Fiona]

Hi everyone. Just wanted to say hello, now that I am back from Colombia for a while. I'll have to catch up on everybody a little at a time, but looking forward to it.

As for me, it's been almost six months now since I received the permanent ear implants from Dr. Werth, and stopped taking Mirapex/Neupro Patch completely. I think the implants are starting to kick in now - slowly but steadily. Is it placebo? Who the hell knows, and I don't care. If we are as subject to the effects of the placebo syndrome as reserachers have claimed, I want to know why the heck hasn't that been a serious subject of study of how to harness it effectively.

Meanwhile, I did find the result of stopping what Mirapex I was taking seemed to lead to incredibly overwhelming depression and panic attacks for months. However, that is now completely gone. My family says I seem normal for the first time in years, and at least 60 percent better than I was.

I still have the off periods - am still taking lev/carb, Stalevo and Amantadine, but a little less than before (maybe 8-10 percent?) But what I consider the worst of what I was taking (Mirapex) is gone with no replacement, and the off periods now are certainly no worse than when I was taking it. Need to re-experiment with Mucuna again. In South America I received much oxygen and vitamins, minerals, amino acids by IV. I am considering doing some other treatments they have down there - waiting for things in Colombia to blow over a bit on the socio-political front.

But even though I have the off periods to deal with, I feel much calmer and matter of fact about them - almost observational and detached, and much more able to have confidence in my own personal energy to deal with them. It's hard to explan but it's a real quality of life difference that instead of escalating the fear, frustration and panic that they often have generated, I have come to see them as chances to calm down and relax...it's weird, and who knows how long this will last, but it is very interesting.

I also had the opportunity to interact significantly and personally with some of the major shamans and healers of certain indigenous traditions down there, and feel that this spiritual work was enormously helpful to me. And I definitely feel much more clarity since stopping the Mirapex, am much more able to prioritize effectively, and find that I don't get so distracted by short-term dopamine reward activities such as the urge to shop, endless useless craft projects, etc...Still developing this new personality, but it is much better, I can say that.

Anyway, happy to have internet access again, and hope to interact with you all much more.
best to everyone,
Fiona

[maryfrances]

I am so thankful for this site and the people here.
xxxooo

[KC Tower]

I am always suprised at common ground found here given the relatively few people that post.

Nice to have someone that feels like a kindred spirit given the same anniversary - too bad it wasnt an end of year quota :-)
talk to you later ,,, ken

Originally Posted by Colinjc

Good to hear that you are having fun. Just thought I would let you know that I was diagnosed on the same day as you: December 31, 2002. Although I probably beat you by a few hours as I was diagnosed in Australia. I didn't say anything to my family immediately and remember going on to a family new years eve celebration in a fairly bemused state. I'm sure we all remember the day we were diagnosed very clearly.

We also have in common CoQ10 as I have been taking 1200 per day for the last 5 years. I'm not sure if that is the reason for me doing reasonably well so far as it's a bit hard to tell from a sample of one. I would like to stop taking it because of its' cost but am waiting for a report saying that it probably isn't effective.

50 posts sounds pretty good to me. I posted a few times on the old braintalk forum under another name when I was first diagnosed but I have to admit that I am really just a lurker. I do check this site fairly frequently and admire the energy and commitment of Steve and others who contribute on a regular basis.

Colin