Hi Everyone..The weather here in R.I. has been phenomenal for the month of Nov..With the exception for alot of rain this month the days have been mild and only a few nights below freezing..It was a great month for fishing, and I got alot of days in..Today was absolutely beautiful out there

My brother went in to see the Urologist on Monday, and the Dr said that his prostate was enlarged, but minimal for his age..He suggested a biopsy anyway just to be on the safe side, so my brother will go back in on Dec 8..The encouraging news is that the Dr said that just because his PSA was high doesnt mean that there is anything wrong..That was a relief!..So we will see what the outcome of the biopsy results are

I spent Thanksgiving with some friends this year because my truck is on its last leg and I didnt trust it to take the 70 mile ride to my girlfriends house in the pouring rain..My brother spent the day with my aunt and uncle..The turkey was great as was all the trimmings..It was a good day, and it was a day of rest in a sense for me that was much needed..And as usual it poured cats and dogs all day long..Seems it always rains 9 out of 10 Thanksgivings Days..It was also a good day to reflect on how good my life is inspite of that fact that I have pd, and that in some strange ways pd has also enriched my life..I needed to think about that, because there is no denying that pd is now begun to invade the other side of my body..Its apparent in my gait, and my left hand has lost some coordination..I drop things frequently, have some difficulty occasionally picking things up, separating bills in my wallet..turning pages, as well as other assorted tasks, and sometimes it tries my patience, and angers me..Ive found that acceptence comes in layers like the peeling of an onion..You are confronted with it..you embrace it..and you let it go..and move on..untill next time..

Because I sold my boat I was able to buy a 19' fiberglass boat, motor, and trailer that was a real sweet deal..All in excelent shape..I need something much more stable than the boat Ive been using, and I also bought another truck yesterday, A 2001 Ford Ranger with a 4 cylinder engine..Now when gas goes back up to $3.25 per gallon it wont matter so much..You have to fight fire with fire..If ya cant join 'em..beat 'em..

How was your week?

Steve

Steve, I am so happy for you. What a week - a good dr report for your brother, a new truck, a new boat. How sweet!! It couldn't happen to a nicer guy.

I may try to work on Monday even though I haven't fully recovered. Will see surgeon on Tuesday. Working on a list of questions - like how come nothing was done? only not so abrubt.

Have a great week, everyone.

Mama

You are still having problems, I know it!
You must stand as strong as you can now.
Accept that thing that they wanna stick in your mouth for breathing if you have to, thousands of people have travelled this way. They should be knowledgeable enough to go in and doing what they have to do.
It Will all work out, and you'll be OK for years, my wife always says" that's the hard part" !!! cs

Went into this past week still astonished that DBS was being suggested for PWPs in Stages 2 and 3. And, frustrated about driving, which I am dealing with...long distance driving that is...quietly, without letting family members know. No lecturing about the family member part, PLEASE. One thing at a time

Then my grandson had a runny nose on Monday, which turned into bronchitis and sinus infection for me by late Thursday. Went to the doc on Friday...chest x-ray and rx's. Stayed in bed the rest of that day and then most of Saturday, which my spinal fusion argued with me about doing. Amazing how quickly my PD compromised immune system has deteriorated this past year. This is the unteenth time I have been sick this year. Seems every cold type germ does it to me, and being around elementary age kids most of the week doesn't help at all. I am finally going to see an Rhumetologist in two weeks !! Another dx...I hope NOT

Steve, I definitely empathize with you over the transportation issue. I tried so hard for five years to make do with cars that cost under $500 dollars, so that, 1) I could pay for it all at once, and 2) wouldn't have a car payment. In my life, I never thought the day would come when I had to drive such old cars. But, then people do it all the time...a humbling feeling for me, indeed. At the time I was traveling back and forth between south central NYS (Corning) and south central PA (Gettysburg)...199 miles/4 hours one way. I went through four cars. I finally gave in and bought a $10,000 car and now have a car payment, which I have no business having, but the fear of breaking down became far too great.

So, if my joke of a budget wasn't difficult enough, now it is what rx co-payments can I afford this month. I have to inform my MD neuro this week that Azilect is out, since it will begin to cost me 100% by April 2007. I was to have to stop Mirapex, but an angel came to my rescue and I now have a big supply of that. And that goes to all my brand drugs, except my insultin, which I don't have a choice about and for which there is no generic.

My eldest daughter, who is NOT a cook, did a awesome job with Thanksgiving on Thursday. Sweet thing...she followed Martha's November Food magazine T-day meal ideas to the T and it was totally wonderful. My only responsibility was to bring the soy ice cream, so my youngest grandson could have his favorite dessert...ice cream. My grandmother counterpart brought Kentucky Derby Pie...oh my gosh ...imagine...pecan pie, with bourbon and chocolate chips in it

I have to Vent now...sorry...The part about Medicare Part D that angers me the MOST is that those of us who can't afford the 100% Gap, must resort to the more inferior older drugs that are now generic, or go without if there if not yet a generic. We can't enjoy the benefits of the new better drugs that are on the market. So, between now and April, and I have already done the numbers and determined I will hit the Gap, I will be transitioning to all generics or stopping any brand I already take.

The only other resource is to pick up samples from my Internist. Maybe I can arrange for PD meds pickup from him also, if he and Dr. Shulman can arrange something...now there is an idea. People tell me to try getting free meds from the pharma companies. Has anyone actually taken note of the level of income one has to have to qualify. My income is too great to qualify

Hi everyone,
I am home again after a little friendly visit to my local acute neurology ward, where there were many people with really truly awful conditions, and in the worst of states, so feel both that I have a lot to be thankful for, and that at least PD does not rampage through us in the way some diseases do.

Having said that, it was interesting to be off meds for several days. I did not get the dreaded things (NMS) that I feared from coming off sinemet, but nevertheless felt for a few days as though I should have had an egg between my feet - I just needed a white bib to do a good impersonation of one of those penguins in that film ..... and was very grateful they did not keep me in the further week that they threatened.

Neuros could still not make up their minds and sent me home to avoid using up any more tax payers money! And things have progressed a fair bit since I was last unmedicated, so Steve, I know what you are talking about. I'm bilateral assymetric, and like you recently my left side has started to feel less able. I remember that you had a similar initial response to sinemet as me. That was a v. interesting article regarding the dominant side of the brain, this thing of PD stating in one side has been on my mind a lot..... you know, WHY? I hope that you get this sorted out, maybe you need your meds tweaked a bit??

Anyway I now have a 'possible PD' dx!!! CS, your words and support earlier this year gave me the courage to say that I would be in a mess without this drug, and to believe in myself. Many thanks for everything, and hope things are OK with you ... it is great to see you here ....

I have been very flabbergasted by 'objective' science this week, PM me if you want to know more! To all those who have had the arm-twistings, the touch your nose, the hold your hands out, and all of that stuff, and come away none the wiser, I do now absolutely believe that this is what happens when doctors simply do not know.

Well I am so grateful to be back in my nice new little house, and with my lovely 15 year old, who valiantly became the man in the family and made sure that everything was okay, that the rent would get paid, and that there were no loose ends that would unravel while I was away.

So sad to hear about Gina - I remember some years ago on PWLP chat when we had Gina, Tina (from Belgium) and Nina - it seems a long time ago now...... and many names that we no longer see ....

Mama, take courage, and look for your own inner reserves of strength. And we will be thinking of you..... xx

love to you all
Lindy

thanksgiving proved to be a beautiful day here in Ohio. husband ran a 10 kl race (says he used to walk faster than his present time) in the early AM, played 5 holes of golf (badly, he says--his goal now is to shoot his weight) and then fried 2 turkeys! Our family was introduced to fried turkeys by my brother-in-law in lake charles, La. 10 yrs ago and we have prepared our T'giving turkeys by frying them since. this year we had just enough food for everyone--only left overs were the desserts (which we do not need in our house). our 3 adult children were here, and daughter's present boyfriend. boys' girlfriends were at their parents. we also had numerous friends who were without family plans/obligations.
my niece's husband, who was diagnosed initially with Parkinson's 2 days prior to my husband's diagnosis in Aug, 2002, has been re-diagnosed with Lewy bodies with dementia. He is but 58 yrs of age, and was formerly a practicing gastroenterologist. The Sinemet, Mirapex, Ritulex, etc. results in such erratic responses--sometimes he is somewhat lucid and mobile, other times he is crawling on the floor, or lying in a frozen position. He was admitted to the hospital recently and they experienced the horrors of inadequate medicating/inability to adapt any schedule rules, etc. that others on this site have shared. Unfortunately, lewy bodies with dementia does not respond well to medication, or anything else it seems.
I began this post as a thanksgiving one--and I am thankful. My husband is functioning well after 2 yrs of diagnosis, and all the children are well and so am I. and the thanksgiving day dinner dishes have been cleaned and put away. madelyn

I remember hearing about fried turkeys from Brenda [PLWP] several years ago and I had my second one this year with friends. It certainly is faster. When I got there and saw the uncooked turkey on the stove I thought...uh oh...it's going to be a long day and I'm hungry now. Much relief to hear that it was going to be fried.

Congrats Steve on getting some things straightened out, hang in there mama, and Lindy I can't figure out why they can't just call it PD. You've never described a symptom that doesn't fit.

Carolyn I turned my finances over to a family member.....I can't deal with it anymore. I'm developing a phobia about opening mail...the bills get paid, but I push it to the limit...does this have a name? Like mailphobia? or afinancia?

Good week all,

paula, i have the same problem! had to put all my credit cards on autopay and even so have missed some communication that allowed one of them to more than double my interest rate -also, they change one's minimum payment and one's due date without warning, so it is really necessary to at least check in on line every month. i do try to open what i can force myself to, but there is currently a several-inch-tall pile staring me in the face... unfortunately, there is no one to take this over for me. oh well.

We had a nice holiday with my parents. I'd ordered a meal from the local grocery store - they said i'd need to reheat the turkey. I was OK with that - i was NOT OK getting a frozen - fully cooked bird... But it all turned out ok in the end. We ate on the patio - mid 80s (Phoenix). That was lovely.

But NEXT year I'm going to cook the meal AHEAD -- turkey 2 days ahead, potatoes & stuffing the day before, etc. And on the holiday i'll just reheat. It's my plan for the Christmas dinner.

On another topic, my husband & I have been bike riding every day, in addition to my walks. It's great and I find the exercise makes my meds last longer. Sometimes I forget to take a dose. Anyway my bike is actually a "trike" - a recumbent trycicle. It's fun to ride and I have no balance issuse when riding it. And boy do I get a lot of stares as I ride around the neighborhood!

I am thankful for so many things. Not least of which - I am thankful for the amazing people I've met since my diagnosis. Thanks to all of YOU for your caring and support and advice!

Paula & Boann,

ME TOO!! I hate opening the mail. What is with that?! I set up automatic payments through the bank. So at least some money is paid on each bill.

What is with that -- mail-itis?