Take Away form the PDF 50th

[Stitcher]

One of the things that was greatly discussed at the PDF 50th Anniversary symposium last week was the non-motor symptoms of PD; e.g. excessive sweating and gut issues, constipation, depression.

The research/questions being asked these days is does PD start not in the brain, but in the body; e.g. excessive sweating, constipation, depression.

I have had two of those for decades, long before my thumb tremor in 1988.

My sweating is so bad now that I have to make sure I have paper towels in my pocket when I leave home. I can actually become very anxious if I don't. I can't get to the cashier in the grocery store without literally dripping of the ends of my short hair and rolling down my back, or even worse, having visible wet places on my shirt.

Anyone else have non-motor issues that may pre-date PD dx?

[paula_w]

Carolyn and all,

It was good to hear a talk about pain also. The speaker described the types of pain so well. They are getting a grip on this illness. Then he was asked a question about excessive sweating and, again, he hit the nail on the head, which, no pun intended, is exactly where this sweating originates and is concentrated around. I have developed this problem in the last few years; didn't have it before the pd. It is like your brain is sweating.

paula

[indigogo]

Two big thumbs up for depression and "excessive head sweating"! I often look like I've just stepped from the shower; I've taken to traveling with a portable fan. Talk about depressing!

[Dottie]

Me too!

Mine started a few years ago- a long time after diagnosis. I've been known to hop in the shower three times in one day. My husband and my neuro tell
me t hat movement brings it on - while I say that it starts around my hairline first and continues until I'm soaked through and through. There is no
pattern as to activities, etc.

Prior to this excessive sweating I was the one who was always cold - go
figuire!

Dottie

[Stitcher]

...there have been times in the summer when I have to shower a couple of times a day. And getting out of the shower...yikes...it can be as though I never even dried off from the shower.

I hated it particularly when I was still working and trying to get dressed, or racing into a meeting. Or when I had to be in the board room to meet with outsiders and had to walk across the parking lot from another building. I didn't have that paper towel idea back then.

[Stitcher]

Another take-away from the PDF 50th symposium: many of the research presentations focused upon non-motor symptoms of PD. Many researchers and movement disorder specialists are thinking that PD does not begin in the brain at all.

Did you know, for example, that the lose of smell is almost always present before physical symptoms. There is a clinical trial recruiting for this. It is also using family members in the trial. It appears that many non-PD family members have failed the test, only to become PD symptomatic within two years.

Other non-motor issues include constipation that may begin years before PD become symptomatic. Also depression and excessive sweating.

Paula, do you remember other non-motor discussions of this kind.

[Todd]

First, the interesting thing about the sweating issue is that you'll notice that your head will sweat, as well as other parts of your body, but the palms of your hands typically stay dry. Strange... :confused:

Dr. Braak's staging theory was discussed quite a bit, with constipation issues, loss of smell, and sleep disturbances being present before the onset of motor symptoms. While there is much debate surrounding his theory, it certainly held true for me. I had all 3 of those issues prior to my motor symptoms manifesting themselves.

I like when they (doctors and researchers) bring up these types of issues (including pain and depression) because it just helps remind me that the "things" that are going on with my body aren't me just being crazy or paranoid - they're very, very real issues.

It was a good, informative conference.

[indigogo]

Todd - my doctor told me that in PD we lose the ability to sweat through our hands and feet leading to profuse sweating from head and trunk. I don't know what the mechanism is.

[vlhperry]

Does this mean Parkinson's Disease may fall under the category of Endocrinology? I ask this as I sit here sweating on a 50 degree day with the air conditioning on set at 67 degrees.

Vicky

[Dottie]

I've spoken to my Endocronologist(sp?) at least three times about this sweating problem and she says there is no connection.

Dottie

[Ibken]

I was told awhile back that pd sweating occurred because dopamine is necessary for regulation of the thyroid - among a million other functions. I know I experience sudden sweating oftentimes when my l-dopa level is dropping. It also can happen when I struggle to move because my l-dopa is low - at night, in bed.

On the loss of smell, I noticed that before tremor, etc. ie before I knew I had PD. My sense of smell did come back but it is somehow different - can't really say how, but it is not as keen and is variable.

I suspect you are onto something Rick, re the endocrine thing. After all, the endocrine system is majorly affected by stress, PD's biggest enemy. And it supports my belief that PD starts in the woo-woo zone between matter and spirit - which would be emotions/hormones, wouldn't it? And I think that's why it's so hard to "treat."

[paula_w]

I like that may I quote you? "in the woo woo zone between spirit and matter"....I'm not kidding!

paula

[Ibken]

I'm flattered! Absolutely....feel free to quote me...on this one! :D ibby

[chasmo]

we're all in the "woo-woo" zone!!! That explains alot, I think......

Charlie

[paula_w]

Journey to the center of the woo woo zone:

We spoke to Dr. Surmeier about how PD is much about timing. Just as a person who stutters kind of falls all over it before he can get it out, as if it congregated and froze - so is a person who tries to write his name and by the end of the name it's literally scribble; so is a pwp who can run or dance but not walk without freezing. Connections are broken -

Greg Wasson is in a trial with an audible feed back device that paces his speech. He is the type that can handle that kind of device - some couldn't. Greg - if you read this -does it help anywhere else on your body..like getting out of freezing or any side benefits?

I think i may have already posted it but can't hurt to again. Surmeier is the guy who is working on immediate relief from istr----the blood pressure medicine. He said it does not make low blood pressure any lower....good news.

paula

[JACKMANA]

I keep coming across the loss of sense of smell as an (early) indicator of PD. Mine is fine, however I have experienced muscle/joint/nerve pain & spinal problems on my left side for years.
Angela.

[Jaye]

The blood pressure one is isradipine, brand name Dynacirc.
:D

[paula_w]

Jaye, hi....a lttle skimpy with the details aren't ya? Can you talk about taking it?

Paula

[Ibken]

Aren't you taking it, too? Brand name ? Dosage?

The electric thing sounds a bit woo woo to me - therefore of interest!

Anybody familiar with Janice Walton-Hadlock's PD theory regarding blockages and backward Qi (electric?) flow? :rolleyes:

[RLSmi]

I think it is ENDORPHINS, ENDORPHINS, ENDORPHINS!!! Some say that translates into exercise, exercise, exercise!!! (Either one, however you can get it.) STRESS robs you of endorphins.

[jeanb]

I'm taking Dynacirc / isradapine, 10mg 2x/day I believe that's the dose Dr. Surmeier is using on the Phase 1 trial.

It works for my high BP - and I"m hoping it works on my PD.
:p

[Jaye]

I'm not sure I have anything more to say about it than I already have.

[jeanb]

I finally learned the official term for why i am so fidgity - akathesia (akathisia) sometimes referred to as internal tremors, but is someone who can't sit still, gets stiff, has to move, squirms all the time. This is why I stand at the side of the room during a conference - I can't sit in the middle of a row - anywhere - I stand up at the counter at home to eat - long plane rides are agony - because I get stiff and fidget and have to to get up and MOVE!

It's related to restless leg - so the meds for RL are generally used for this. That would be Mirapex and Requip - one made me O/C and the other made me nauseous all the time.

Funny geting a name to something - now after 5 years I would like some relief. So after contacting my doctor - we decided I'll try the neupro patch. It's an agonist - so I'll be watching to see if it makes me obsessive compulsive. And if that doesn't work - neurontin.

Fingers crossed that something will work .. wouldn't that be nice... but we shall see.

[Ibken]

I'm exactly as you describe, Jean B! Stand at the computer to type. Stand at the kitchen counter or a table to eat, even to read and write.

I'm wondering if you recall any injuries to either - or both - leg or foot. I have had a popping hip since a fall off a horse at age 11....among various other mishaps - stepping on a nail, sprained ankle, etc.

ANyway, please keep me posted as to what works for you.

Most oddly, this time last year for about 3 months I was able to sit, drive, etc like a normal person. Then everything went wacko backo and I'm still trying to halt the downward spiral. I'll let you know if I'm able to turn it around. It was lovely while it lasted! Ibby:o

[jeanb]

Ibby,

yep - I fogot that - I also stand at the computer to type - actually hop on and off a drafting stool (but mostly stand) and have the monitor up HIGH...

I sprained my ankle once as an adult, but no other injuries I can think of to feet or legs.

I promise to keep you informed if anything works for me. I received a script for Neupro patch -- and mailed it in to the pharmacy today. I should receive the med next week.

:hug:

[pegleg]

I was at the PD 50th Sympoisum, also. And it was nice to see that researchers are looking into the non-motor symptoms more.

Vicky - I know that endocrinology must have something to contribute to PD. I had thyroid surgery for a toxic goiter in 1971 - I was hyperthyroid (overactive). I could eat anything and was as skinny as a rail. Now I gain on the fumes of food! lol But it was gain weight or wear out your heart.

And don't forget to add rheumatology to the study of Parkinson's. Many PWP have autoimmune disorders. How many of you have diabetes? How about fibromyalgia?

And for the record, I SWEAT, too!!! :(

Peg
PS - but my Secret keeps my armpits dry! lol