[stevem53]

Hi Everyone..Welcome to the new community members and lurkers..Please join in if you havent, and if you have, please continue

What a day here in the Northeast!..Torential rain, and southeast winds gusting up to 60 mph..My support group meeting was this morning, and much to my surprise the place was packed!..Parkies arent wimps, thats for sure..It was like a mini hurricane here today..I was asked if I could pick up one of our new group members who lives on my way to the meeting..She has had pd for 25 years, and had DBS last year, and completely lost her speech as a result..When I arrived at her house I introduced myself to her husband who was grateful that I was able to pick her up because he had to work today..She was sitting in her wheelchair, and we got her up and she shuffle..stepped..froze..shuffle..stepped..froze out to my truck, and we got her in the truck and buckled her up and off we went in the pouring rain..We chatted..I talked and she responded with a palm pilot like device, and handed it to me to read her response..I could tell that she was happy to get out to the meeting, and I was happy just to get her there..There is just something that touches the heart and soul when you reach your hand out to folks..So anyway I got her back home safe and sound as the weather was alot worse when we left the meeting, and I gave her my phone number and e-mail address, gave her a hug and told her to call me if she needed a ride to next months meeting..After all the controversy in the PD world this week, I couldnt help but think about how important public awareness of the losses we incur as a result of this disease..Anyway I had to go down to the boatyard and check my boat after I left her house..That got me good and soaked..Everything was ok, so I jogged down the finger pier to my truck and got out of the rain..Its amazing how I can jog better that I can walk..Weird disease!..

I fished almost everyday this week, which was good..I really had to force myself to go because I really would rather have stayed home, but once I got in the boat I was happy that I was there..Damned lack of motivation..

Ive got an appointment made with a Urologist for my brother on Nov 20th..Hes doing ok and going about his business..I dont bring up anything about what might or might not be going on with him, because I dont know for sure, and I dont want to worry him, even though Im worried myself..I think about the "what ifs" everyday..Its real hard not only because hes my brother, but also because he has this child like innocence about him..Hes had enough obstaclers in his path during his life, and this just doesnt seem fair, if its cancer

So thats my week folks..How was your week?

Steve

[paula_w]

ok wrote a long one and lost it lol. so i am going to repost tomorrow. i'll just say that "jump off the boat "makes us all a little sad, well actually a lot of everything.

But I know you are one of the funniest guys ......

paula

[RLSmi]

Steve, in contrast to your rotten weather, we had one of those perfect days in Louisiana today. I'm sorry things were so rough up there in the Northeast. Your support group sounds like a bunch of tough, hardy Yankees!
We took full advantage of this cool, dry, sunny day to begin opening up new flower beds. Taking up lawn turf that is 40 years old and laced with tree roots turned out to be a big job for a couple of 68 year olds, but we made a good start. That storm you just had in New England blew through here earlier this week, leaving the soil in perfect shape for gardening.
We are also growing accustomed to a new dog in the family. Our son and grandson live in an apartment that does not allow dog pets, so we now have their "Abbie" living with us. She is very affectionate and energetic. On walks she likes to move faster than is comfortable for us, especially when she spots a squirrel to chase.
That's about it for now.
Robert

[ol'cs]

when you touch one key and somehow your post goes poof!
I can't seem to successfully log out on the first try most of the time.
Anyway, using the Apokyn pen twice a day/0.2mL of 10 mg /mL solution. So far no problems. I get sick for about 15 minutes but never have barfed. Then , if i don't get nauseous, i won't go to bed. I'll get dyskinesia, if I stay up but it is repalaced by a good mobile feeling in about an hour.
THis dose will go up a bit, "it's not optimized", but i still haven't fallen down and that is needless to say another "fear" has dissapeared for the short time. REmove these little gains in therapy, and depression will gat you. I'm more dyskinetic, but once again, it's a tradeoff, and with further reduction in meds, and the demonstration of a real "positive benefit" (as judged by the patient, me) observed, then I think that the Apokyn "pen" will be worth it.
See, I won't get kicked out for stumping the Apokyn pen.
Had a wierd idea, a one night. A disgressionary "5 bucks for brain disease research " off of our taxable income for the year, whose goal (although nearly impossible in practice) is to add enormously to the funds able to allow federal support of cures needed for brain disease. Not just political promises from either party, but by a separate mechanism that allows one to make their very own , right from the bank, contribution towards the cures for horrible long lasting disease vote of confidance, by either Dems or Repubs, and thus dissociate themselves from their actual party of choices viewpoints on the matter which they might feel oppossed to or not.
One little line on your income tax form; five bucks if you don't have anything to put in the "charitable contributions" box, do a little something now, and whatever party prevails, make it POINT CLEAR that the money isn't going to the "taking of life away" but is simply to fund a stage on the way to the brave new world of incredible cures for terribly affected people, not using one cell from a blastocyst, or whatever, but using your own cells, which represents the best way to grow the needed tisssue, non-rejected and tailored exactly from your own cells DNA. A small few cells from anywhere in your body that can be manipulated to give a well-tamed, rejection proof cell mass replacement that could save not only your life, but also make whole, all of those who love you, but live to see you sink slowly into the sunset. NO more disability. People working instead of relying on the inadequate SSDI, which they are embarrassed to take but have no choice, people standing up and walking after years in a wheelchair. Would not Jesus Christ HImself promote this as an act of charity to all those who are sick in the crowds? cs

[mamafigure]

Steve, if only the world had a few more people like you it wouldn't be in the mess that it is in.

Paula, don't you hate that? Half the time when I write a PM, the thing gets trashed. Best wishes to you.

Robert, now I live in the south, too (southern tip of VA) and we've had rotten weather. Not fair! We even had snow this week!

cs, as always, you make a lot of sense. See, that 's the problem. You should talk in riddles and make your answer undecipherable...then the politicians would jump all over it.

Me? I've had a rough week. I got a call on Monday that I had to have a colonoscopy on Thursday. Didn't have trouble with the prep, except for the Reglan. I am deathly allergic to it, I found. I had the procedure without anesthesia or pain meds. I even got away without being hooked up to the monitors, so it was good. The dr said that it was a very rough procedure and didn't see how I made it through, but I was greatful for the chance to do it my way. I have adhesions compressing the bowel...lovely....

The pain continues to get worse. I slept or at least stayed in bed for 4 hours, so that was pretty good, but finally gave up and got up.

I get to see the surgeon on Tuesday.

Mama

[wendy s]

Mamafigure, you are one strong lady! Hope they can fix your problem soon and you'll be free of pain and no longer worried.

Steve, I hope your brother comes through the tests and all is well for him.

CS, they had a program at our grocery store where you could have them scan a bar code that added a few dollars onto your bill and the money went to a charity. It was quick and easy, and let you do something you always meant to do more of but didn't get around to.

Our weather is terrible, we had over a foot of snow yesterday and it's ten below C (about 13 F). My husband and I cleared my parents' driveway of snow as it's paved, and then needed four wheel drive to get around town. Our driveway is long and gravel, so we just drive over the first snowfall to pack it down and cover up the stones so they don't end up getting shoveled onto the grass. Our first winter without a kid at home to help shovel! We were supposed to go to my sister-in-law's 25th anniversary, but they phoned and said to stay home, it was just too risky to drive. About five more months of this, sigh. We joke that our climate isn't that great, but at least it keeps the population down!

[Todd]

Steve...that was a very cool thing to do. Can you imagine just how much that must of meant to that person? I'm always amazed at how people seem to have such a difficult time being kind to each other.

I read everyone's stories about the weather and I just smile. In the upper 80's around here and I love it! You can all have the snow. I like being able to run around in shorts and a tank top in October!

Only 6 more classes and my grad school will be over. It's funny because at a time when other people with PD like me are looking to retire and leave work, or at least cut back, I'm looking to try and re-enter the workforce. Try living in Southern California on SS disability. It's quite a challenge. You have to be very creative with the finances! Thankfully, one of my wife's two masters degrees are in finance, so she gets to handle all the $$$.

I hope everyone is doing well. Fight the good fight...

Todd
PDTalks.com

[mamafigure]

Wendy, thank-you for the compliment, but I am not that strong. In fact right now I feel rather fragile, but I was rather pleased that I didn't make a fool of myself at the procedure.

I am worried about the surgeon visit on a number of fronts, but one is that they rarely do surgery for adhesions unless they are causing a total blockage (which has between a 5% and 48% mortality rate, depending on the type of blockage). Since I live a good hour from a decent hospital, this is a bit troubling to me.

Steve, I forgot to tell you that I'm thinking of you and your family.

Todd, stop your braggin' The sun is out here finally, and it has warmed up to 51 degrees F.

Mama

[stevem53]

Thanks everyone for you concerns about my brother..I will keep you posted

Todd..I could tell that she was very thankful even though she couldnt talk, and has extreme difficulty with facial expressions..A few minutes after we first left her house I could hear these computer like noises, *doot*..*doot*..*doot*.. ..and I took my eyes of the road to see what she was doing, and she was punching in a message for me..It was only 3 words.."Im glad you..."..And I told her she was welcome anytime..I hugged her before I left her house after I dropped her off, and I thought about whether it was appropriate to hug someone that I hardly knew, but I thought that it would send two messages..One that I understand her circumstances..and two..I know how self-sufficient we want to be even when we need help, and I figured if she had felt like she had put me out of my way on such a nasty day, that it would ease her mind, that I was more than happy to oblige

Steve

[paula_w]

sister's here...off to Universal Studios...hmmm...which shorts should I wear? Weather - perfect....hmmm

I like the new Spiderman ride.

Paula