[stevem53]

Hi everyone..Welcome to new community members!!

Its been a chilly week here in the Northeast..Highs in the 40's..Brrrr!

I saw my neuro on Monday, and he says that hes pleased with how Ive been doing..IMHO..Ive done better with some of the old symptoms, but new ones have developed..I noticed that typing isnt as smooth as it was before..I can only type with one hand..I cant type with my other hand at all..My hand feels like its fatigued, and a little less coordinated, so my pd has definately progressed to my other side..What Ive noticed is Ive just gotten better at doing the tests of motor skills that my neuro has do..And it means nothing in the overall way that Ive been feeling..I explained this to him, and he was surprised..According to his estimation he feels that the meds have really done their job, but the truth is that I have some new symptoms..not that the meds arent working..they are..Only we really understand how we feel

I got out fishing a few days this week..The weather hasnt been that great this week..Ive got a couple of guys who want to look at the boat..Im keeping my fingers crossed..

That about sums it up for me..How was your week?

Steve

[DaleD]

I'll take the 40 degree temps. It was 10F when I took the following picture of the moon about an hour ago.

I miss your beautiful pictures Steve.
Was a long week after falling Thursday and cracking a rib. Getting along fine but moving very slowly. Busy time at work and would hate to miss any more but we'll see how I feel in the morning.
How do any of you that are single handle emergency situations? I have a duplex and my daughter and two grandkids live below me so only have to pound on the floor to get their attention if I couldn't get to a phone. If they wouldn't be home I'm not sure what I would do.

[GregD]

Hi All,
Steve, that seems to be the normal with PD. One doctor visit I'm doing fairly good, the net one something else has come up. It seems to be a never ending battle.

Dale - I don't know where you are living but 10F is too darn cold this early in the season. Beautiful picture though. Sorry Dale, I didn't see Alaska as your location until now.

We spent the afternoon cleaning up the leaves that have finally finished falling. I always hate that job. I need to caulk a couple of cracks I found around a window but we are pretty much ready for the winter.

I hope you all have a great week.

GregD

[wendy s]

Steve, that's an interesting thought, about whether there's any connection between the neurological tests and our actual day to day function. I just tried the thumb and middle finger tapping test, and just at this moment I'm really good at it for about 7-8 seconds. If I did that for my neuro, he'd think I was better than ever. Yet I'm starting to notice gaps in between meds when they don't work as well - something new for me.

We've got a pile of snow and sunshine, it's just a gorgeous day out there at 15 F. The people sitting in their vehicles in ditches waiting for the tow truck probably don't think it's quite so great. I slipped on the ice yesterday and crashed down on one side. No harm done, just a wake up call thank goodness.

I don't want anyone to think this is advertising, but I've ordered most of my clothes for years from catalogues, specifically LL Bean and Lands End. I just like their stuff and we have to drive a fair ways for good shopping, but I was thinking that catalogues would be very handy for anyone who's slow dressing and doesn't like trying on clothes in stores. They will take anything in return at any time for any reason, no questions asked.

[Todd]

10 degrees? 40 degrees? I don't know how people do it. I just don't do well in the cold anymore. Makes my body so stiff and it seems that once I get a chill in my body, it can literally take a day to get rid of it. Thankfully I live in Southern California where it's still in the 80's! (Yeah, that's right, I'm bragging again!)

Finally finished all my major projects for school so now I can just sit back and coast during the last 6 weeks of my academic career. It's such a relief to not have to stress over assignments at the last minute. I'm glad to be almost done but not sure where I'm headed next. School has been a huge part of my life for the last 5 years and now it's almost over.

Other than that, we're just working on the marketing component of the speaking business. I've already started booking dates into 2007, especially during April, National PD awareness month. Trying to spread the word however I can.

I was also told by the NPF that an article I wrote will be in their next journal, which should hit the mail sometime next week. It'll be interesting to see what the feedback is.

Otherwise, just hanging in there. Having some frustrations with finding a good neurologist within my healthcare plan. Physically, I feel okay. Some stubborn dystonia pain in between my shoulder blades and into my neck, and my fine motor skills in my right hand have me cussing like a sailor sometimes, but otherwise life's not too bad all things considered.

Have a great week everyone!

Todd
PDTalks.com

[Stitcher]

Saw "Infamous" today. An intense movie. How much is fiction and how much is non-fiction...I have no clue.

What starts out as the irreverent journey of the openly gay writer Truman Capote to the middle-class world of 1950's Kansas, where he goes--with his childhood friend Harper Lee--to research the murder of the Clutter family, turns to something altogether darker when Capote forms an intense and complex relationship with one of the murderers. In doing so, he produced his greatest work, "In Cold Blood," but at a devastating personal cost. http://movies.yahoo.com/movie/1808727824/details

Mild cold here in south central Pennsylvania...50s days/20s&30s nights. No wind today... ...the wind can be quite fierce, causing the temp to drop by 10 degrees due to the wind chill factor. I have a feeling Dale can identify with wind chill factors, relative to temperature.

My mother always has the most interesting questions to ask me. She called yesterday to thank me for her 81st BD flowers I had delivered on Friday. While her questions are about PD and diabetes, she never refers to either directly. Yesterday it was, "How are your pills working these days?" I asked, "Do you mean am I doing okay?" She says, "Yes, are you doing better?" Better ...Mother's...they always want the best for us "kids." (I am four weeks shy of 58...LOL.)

I always get a hoot out of my mother's questions . It has changed though, which is refreshing. For years the weekly question was, "How is your health?" To that she meant, how is your PD and how are your symptoms?

Good thing she doesn't ask me if I almost burned the house down recently in an attempt to cook , or how many times I have forgotten my regular morning medication, or how my mental health is...the latter is not good at all. Two years ago I left a Pyrex (thank goodness it was Pyrex) pot on a High burner ALL night. I put the burners in the oven that morning and vowed never to turn one on again, but I do from time to time.

[maryfrances]

I had a melancholy day today. Still waiting on someone to save me, but beginning to realize it's not going to happen. I'm so sad to be this young and feel like I'm damaged goods. I hate this disease and the shame and embarrassment that goes along w/it. It made me cry to see MJF. I wish there was something that could be done for us. Treating the symptoms w/med even begins to work against us! I'm willing to try anything. I just don't want to lose anymore brain cells or movement. If anyone has any ideas, let me know. Anyone want to do a comparison checklist of medical histories, environmental, etc.?
Mary

[stevem53]

Beautiful picture Dale!!

[stevem53]

Originally Posted by maryfrances

I had a melancholy day today. Still waiting on someone to save me, but beginning to realize it's not going to happen. I'm so sad to be this young and feel like I'm damaged goods. I hate this disease and the shame and embarrassment that goes along w/it. It made me cry to see MJF. I wish there was something that could be done for us. Treating the symptoms w/med even begins to work against us! I'm willing to try anything. I just don't want to lose anymore brain cells or movement. If anyone has any ideas, let me know. Anyone want to do a comparison checklist of medical histories, environmental, etc.?
Mary

Mary, I can understand how you feel..I/we all have our moments with it..I had a particularly bad day with it today..very fatigued..even got dizzy for a while, and when I get that way the meds dont rescue me..game is pretty much over for the day..As much as pd has taken from me..it has also given back to me in other ways..Ive been reading MJF's book "Lucky Man"..and Micheal talks about how he measured who he was before pd, and who he became after pd, and he said that he would rather accept his lot that to go back to the way he was pre dx..I can completely understand that..We all have to find our path to acceptance, and that road is paved with all of our emotions whatever they might be..For me sometimes I go back and forth from acceptance to contempt to acceptance to................

But ultimately no matter how I feel, I know where I have to direct the focus lest I allow this disease to own me

Steve

[paula_w]

awake and had to take meds to ward off dystonia. I had one of the most "off" days ever. then remembered I hadn't picked up my amantadine........it still works....on both dyskinesia and dystonia, as I had one or the other many times today and was absolutely worthless.

That is a beautiful picture Dale, cold or not.

Todd - well done, enjoy the coast and congratulations.

Mary Francis - maybe it's the moon...my daughter even helped me voluntarily and my family asked if i could do this next work retreat I'm going to in Maryland. Now I must really be bad when they acknowledge the illness and bring it up first!

paula