Weekly Check-In March 11-17, 2007

[stevem53]

Hi everyone..The weather is giving us some relief from the sub freezing weather that weve been experiencing for a while..Ive been able to get out and do some work on my boat recently..It supposed to be in the 50's for the next few days, and then the possibility of snow on Thursday into Friday..Thats New England for ya..It has felt good to get out and do something other than eat, watch the tube, and sit in front of the computer

I mentioned a couple of weeks ago that my cat was sick, and was eating very little..She seems to have recovered well, and is finally eating cat food again..She would only eat people food for a couple of weeks, which isnt unusual, but she would always eat cat food as well..She would eat just about any can of cat food you put in front of her..I never thought she would get so fussy that I would be cooking for her..:confused:

I was talking to a friend of mine last night, and his father hasnt been doing well for a while with Alzhiemers..Now he was recently dx with pd as well, and is very tremory..arms..legs..So we talked for a while, and I dont know if it helped for him to talk about it, but I imagine its better that holding all the sadness inside


How are you all doing this week?

http://i106.photobucket.com/albums/m250/slowhand_01/milkcartonjpgcheney.jpg

[K Hamilton]

I've been enjoying your doctored pictures. Only problem is, now I think you've put me off of milk for life! :D

My week has been the usual I-wish-someone-would-tell-me-what-is-really-going-on sort of week. One minute it looks like the office is running out of work and going to fold, the next there are so many new projects I don't know where I'm going to find the people to do all of the work. Feast or famine.

I've been noticing lately a bit more of an on-off effect, which is worrisome. Things have been stable for the last 8 - 12 months, and I hate it when things start to change. For the most part I've been able to treat this whole PD thing as a big adventure, wondering what is coming next and what new things it may bring. But every once in a while, I think about where it is going in the long run - so I decide not to look at the long run, which is a combination of fear, happy-go-luckyness, and burying my head in the sand. And by taking this short-sighted approach, I have really not had to focus on all of the really useful stuff that Everett and Carolyn and all of the others have been bringing to the forum. Well, maybe when things get bad enough I'll pay attention to what my mother always said to me: "Pay Attention!"

[Stitcher]

Glad to hear you cat is doing better, Steve. Here in Pennsylvania, Casper the cat was provided with brand new toys this week and is loving his new window perches...sitting in the living room window and the front bedroom window watching the world go by while twitching his tail.
905
The exciting news this week is that my 9-yr-old, 3rd-grade, granddaughter received her first invitation to the National Young Scholars Program http://www.nationalyoungscholars.org/index.cfm. The excitement was palpable! I know many such invitations will follow over the years. Such an exciting day.

We are having the same weather Steve is having in RI. Yesterday was a beautiful day. It was hard to believe that on Weds we have six beautiful inches of snow...it hung on everything...looked like it was early January, not early March...and yesterday it was almost gone and the temps were in the low 50s.

Have a High-Five Week
910

and DON'T eat all the Easter chocolate you are saving for the kids!

909

[jeanb]

Well last week I went to a meeting of medical device manufacturers. Because of dealing with the blood brain barrier, these companies will be important to PWP. Like Medtronic Neurological and its DBS, there is and will be a future need for medical devices to get therapies through the BBB in order to treat or cure PD.

I'm sure I was the only patient there. I chatted with the Exec. VP of the organization who said he liked working with PWP because they are informed and motivated.

There was a general session with Terry McAuliffe (Former Charman of the DNC) and Ed Gillespie (former Chairman of the RNC)
TOPIC: How the Recent Elections will Impact Healthcare Policies and Politics:
Terry McAuliffe spoke (constantly) about Hillary Clinton, and why she would get the nomination and win the next election. He spoke about John Kerry and why he lost the last election. And most importantly, he plugged his book shamelessly ($18.95 Borders and Barnes & Noble). He was amusing, but not nearly as funny as he thought he was. Frankly he’d have been better off simply regaling us with Clinton anecdotes. He’d have been more interesting and funnier to boot.

Ed Gillespie did try to stick to the topic. But the talk quickly reverted to the 2008 election and what would happen – who would win, and then what would happen with health care policy? Of course, no one knows what will happen in the next 2 years. And we have a loooooong election looming. All in all, I was very disappointed in their talk.

Well it's 10 deg above average here now - may hit 90 deg. today! YIKES! I'm not ready for hot weather yet.

I hope everyone has a good week.

[BEMM]

We decided to flee from reality for a few days last week, to leave the ice and snow of Pennsylvania for warm and sunny Phoenix Arizona. It was quite amazing to spend three days in brilliant sunshine and to see green leaves and flowers. Southwest air sent us one free ticket, and we decided right away that a few days of sun and heat were just what we needed. The desert is fascinating, we spent a lot of time in the botanical gardens, looking at the cactus in all its variations and enjoying the birds, especially the many hummingbirds. The only reality we brought with us was my painful walk. I have good days and not so good days, and we walked too much the first day - it is so hard to stop when you're having fun - that I had more trouble than usual walking the next two days. But sitting in the sun drinking prickly pear ice tea is not a hardship, and we loved the food. I was even clever enough to ask for weak margaritas, and they taste better to me than the real ones.

We didn't mind missing the snow that covered Carolyn's part of Pa so beautifully, we have had quite enough of it this year. In the first snowstorm a veritable glacier gathered on the roof of our 2nd floor sun roof. Then it rained, and the glacier turned to ice which came crashing down in huge, murderous chunks, one of which smashed the roof of the back porch, knocking off all the slate and twisting the downspout out of shape.

I think it's best not to look ahead, and to enjoy the now to the fullest. The future is rushing towards us - why anticipate what we know will be hard and unpleasant. But it does pay to keep one eye open to the alternatives Everett and Ron Hutton discover. I know that taking Curcumin has helped me, and I am hoping Robitussin will help as well. I still, with half of me, am convinced that I will not let PD get the better of me.

I'm glad your cat has recovered, Steve. You must have cooked the right things for her.

birte

Ever hopeful.

[jeanb]

Birte - so glad you had a nice visit here. The botanical gardens is one of my favorite places.

Jean B

[BEMM]

Yes, Jean - we had a wonderful time. The botanical garden in Papago park is magnificent. I would go there often and often if I lived in Phoenix. It is so well laid out, and so beautiful.
On the way to Globe we found another Botanical garden, and that was where we saw the hummingbirds.
We made the right choice when we decided to go to Phoenix to recharge our winter weary batteries.

Please give my regards to Papago Park next time you're there.

birte

[jeanb]

Birte - that is one of my favorite places. I spent a lot of time there when I was growing up.

Best, Jean :hug:

[oyster]

weather here in se north carolina, temps in the 60s and 70s yesterday today and through the coming week. wonderful. bulb flowers everywhere, maple trees and redbuds.this week at my organic farm i planted 6 dozen lettuce, 8 doz brussel sprouts, 5 doz kale, a couple hundred garlic cloves, and 20 blueberry bushes. i hope everything grows lol, i'm only in my second season so its all new and exciting.
thank you steve for this recurring thread.
i,m new at this pd thing, dx last fall, i guess nobody gets used to it and if we do then the pd changes again. some of my symptoms have worsened here of late and i trying to be as active as possible, i joned a gym but haven't gone yet. no dopa or other perscription pd drug yet. i take lots of suppliments, coq10, and iv glutathione. i can tell that allthe stuff i take makes me feel better, less depressed, more energy, but i cant tell if it is slowing the pd progression. or even if it help my symptoms :confused:
i know i can rely on the old stand by, one day at a time, and my favorite prayer (even though i'm not christian) god, grant me serenity to accept the things i cannot change courage to change the things i can and wisdom to know the difference.

[stevem53]

i know i can rely on the old stand by, one day at a time, and my favorite prayer (even though i'm not christian) god, grant me serenity to accept the things i cannot change courage to change the things i can and wisdom to know the difference.

Works for me!..;)

[burckle]

We met with a realtor over the week end and officially put our house on the market. Hope things work out as far as timing goes. We are having a house built in Maine which should be available sometime toward the end of the summer. Selling a house and having one built requires good timing.

I got a note last week telling me that I'm being considered for inclusion in the next Who's Who in America. If you look at in one way (a million Americans are so honored) it doesn't sound like much, but if you look at it another way (one half of one percent of Americans are so honored) it sounds like a big deal. I'll settle for a big deal. I get so few big deals.

All the best,

Lloyd

[paula_w]

Here here! Congratulations! Your humor and folksy posts reflect your intelligence and I am proud to know you.

blowing virtual party horn and singing "For he's a jolly good fellow."

Paula

[jeanb]

Lloyd/Burckle - being in Who's Who is a VERY big deal!! Congratulations!!:p

[rosebud]

and post one of my wandering commentaries. Yes I am still on the planet but the last month or so has been challanging and I seem to be going through some changes...I'm making a fundamental turn-a-round in my attitude wrt meds and and all the chemicals we put in our bodies. I've been taking my meds like a good little Parkie for the last ten years and I've decided that hasn'
t gotten me anywhere except closer to needing a walker, and I don't care for that idea much. So after consulting with my Neuro who had his pen poised precariously over his perscription pad when I finallly did get to see him, we were able to come to a concensus on how to decrease my meds rather than increase them (I'm not sure concensus is the word I'm really after) It was really more like I took posession of my body and said thats it! We are not adding anymore drugs -we are going to reduce my medication intake. And he said.."how are WE going to do that?". So I laid out my plan and he played the part of skeptic. I havn't had any sugar or high GI food for two weeks, and I've added some supplements of my own choosing including a commitment to take them. My Blood Glucose is stabalizing and except for a kind of debilitating fatigue, I think I might be doing better. Last night for the first time in as long as I can remember I could actually move around in my sleep. I'm looking at a more natural way to manage my PD. I learned that my antidepressant has a nasty little side effect of making my bones more porous (be warned all you who are on an SSRI...it increases your chances of osteoporosis by 50%...thats not small peanuts) I'm already in the highest risk catagory! I haven't touched a piece of meat in over a week and am getting my protien from "plant sources". I'm on a steady diet of nutrition manuals for my reading materials and firmly believe it will pay off. I have another appointment with Dr. Skeptical on the 3rd of April. To report on my progress. Tip #1: eat apples...theres a lot more to that old saying about an apple a day than we give the originator credit for. Well I'm off to get my beauty sleep...nobody wants to be old AND ugly!

[Teretxu]

Hey Rosebud, nice to see you around! Keep us posted on your progress. I've always been very reluctant to take meds for every little "boo-boo", because I feel like I'm slowly poisoning myself.
Now to apples - my pet theory. Apples and onions are the best antioxidants there are. Anything made from apples will make you feel better and if you're not hungry: cider (even hard cider, for those who like a little alcohol in their diet) or apple juice and vinegar. I get one extra hour of on-time when I drink cider or apple juice and my cramps are instantly relieved by apple vinegar. Keep pickles in the cupboard, folks!

[Todd]

Pretty uneventful week. Bad migraine kicked my butt for quite a few days. Other than that, enjoying the quiet and the unusually warm weather we're getting. It's been in the upper 80's and low 90's. Unfortunately that means that California starts to go up in flames.

I love the fact that we've changed the clocks and get that extra time with the sun. Hate when it gets dark at 3 or 4 in the afternoon during the winter time. Bring on summer! :D

I won an online essay contest about PD and fitness sponsored by the makers of Azilect, so my wife and I get an all expense paid trip to New York for the Unity Walk. That was pretty cool. Nice to have some good luck for a change. We're going a few days early to goof around and try to get in to Letterman.

As a result of my trip to DC for the PAN forum, one of my senators, Diane Feinstein, read my personal story in the NPF journal and called to ask me to help her with an op-ed about stem cell research they are looking to place into papers in California and other parts of the country. I thought that was pretty cool. It ran in an Oakland paper on Monday and there should be more. Anything I can do to help the PD community is fine by me!

Hope everyone has a great week!

Todd
PDTalks.com

[stevem53]

I am going to try to make it for the walk in Central Park also..I'll talk to you when the date gets closer..Hopefully Birtie will be going too

[BEMM]

It would be so nice and fun to meet you, Steve, and Todd too, at the NY walk. I am still mulling over it, and have not made any arrangement yet. It falls on our oldest grandson's birthday, he's turning 12, so our presence means something to him, and it is on a Saturday, so he has no school.
The walk is a really big event for me, an amazing, emotionally charged event. To be in such a huge crowd of people who either have PD, or whose loved one or friend or neighbor has PD, is overwhelmingly touching. To meet hundreds of people who all have their hearts set on helping to find a cure for us is absolutely uniquely heart warming and heart wrenching.

I will have to decide soon between NY or Virginia.

Bravo to you Lloyd, and bravo to you Todd. How exciting and how admirable!

All the best
birte

[Radioguy]

I'm having one of those days -- or a couple days... maybe three or four. I lost count.

Pardon my French -- but I am just SO F***NG TIRED today. I had a crappy night sleep Monday night -- just couldn't get a good "snooze" going. Then last night I slept deep and long and had one strange dream after another... including one in which I was watching an episode of The Sopranos that kept switching back and forth between some kind of fictional story line and the real life of star James Gandolfini. Just strange.

I have no energy, no motivation, no desire to GET motivated. My meds are "on" but only at about 2/3-strength it would seem. I feel slow mentally and physically.

Yesterday I almost started crying when my wife made a perfectly innocent joke.

Maybe I'm exercising too much now. I did my half-hour on the "dreadmill" yesterday and was a zombie for the rest of the day. I've cut back to 3 times a week. Not exercising today.

Staying on the diet although I pigged out on chicken patty sandwiches last night. Gonna have a Slim Fast, mango slices and Propel for lunch. I want to go down to the cafeteria and get several cupcakes and rub them all over my face.

Not a good day, not a good day, not a good day at all.

[wendy s]

Here's hoping for a good sleep for you, Radioguy. For me, a good sleep pretty much equals a good day.

Last night we discovered a huge icicle coming down just outside our window, inside the roofline. Panic, wondering what was happening inside the attic. We were lucky and it was still dry, but my husband and son spent about 3 hrs. clearing up to 4 ft. of snow and ice off the roof, and they're only half done. We don't have a big house, so you can imagine what a horrible job that was. It doesn't look that bad at the edge of the roof, it's just when you get up into the valleys between two roof lines that it's so bad. It's finally getting up above freezing in the afternoon sometimes, and the sun has a bit of warmth in it so the problems are starting to show up. We've had record snow-fall this winter, so now will have record melting - lots of fun.

[Ronhutton]

Hi all,
Taking time off my holiday to say hello, having 2 weeks in paradise,
(Tahiti). I don't know whether it is the relaxation and lack of stress, but I am managing on 150 mg of levadopa per day at present. Could also be the sunshine boosting my vitamin D level. (Does vitamin D open the BBB I hear myself saying!!
Hi Birte, I note you are doing the same in Arizona, hope you are well.
Terribly expensive here, we are having to be very frugle!!
Glad to see Teresa back, hope you are well also.
Back in circulation on 27th March.
Best wishes
Ron

[Stitcher]

Ron, glad you came for a visit.

Surely it is the 930...relaxing and sunshine both.

We got 12 inches of 931 today, so I will be 932 tomorrow...ho hum! What I will do to be near grandchildren.

Keep us posted and have a save 934trip home.

Do you change planes in the US? If so, where?

[lipsinc]

I read your message regarding the National young scholars program. My daughter was just sent a nomination. I'm trying to find out as much info as possible. Do you have any addional info? It's very pricey. Thanks.