Hello

[minkid]

Hello,

This is my first post on NeuroTalk. I have been a lurker here since May 2005 when I was first diagnosed with YOPD. I was 43 years old when I was diagnosed, and I am now 46 years old. I have been on a low dose of Mirapex and Sinemet since August 2005. Lately, I feel like my PD has been progressing a little faster than it was a couple of years ago.

I am a patent attorney. I love to play racquetball. When I am playing racquetball, it is as if I don't have PD. However, once I am done playing, I feel the PD again.

I am making this post tonight to tell all of you how much you have meant to me over the last 3 and a half years. As I quietly lurked here, I learned from you that PD is not a death sentence. I learned from you about supplements. I take essentially the same group of supplements that Mr. Everett recommends.

I learned from you that life with PD is still life very much worth living. I learned that PD is a health condition that requires careful management. I also learned from you that PD is different for every single person. Moreover, I learned that there is simply no way to know how fast one's PD will progress or what symptom will pop up next.

I want to thank all of you for teaching me so much about what PD is, what PD is not, and how to cope with PD. Tonight I have crossed over from lurker to poster. I hope to get to know all of you better. I feel like I know many of you already, but I believe the time has come for me to introduce myself to this community that has meant so much to me for over three years.

Thank you very much.

[indigogo]

minkid - you bring tears to my eyes and strength to my heart - welcome! I love that you feel so good playing racquetball. It is amazing to learn about those singular times we all feel normal.

Thank you so very much for posting! And please contribute more . . . . .

[girija]

Hi,
I am glad you decided to cross that line! Its not an easy thing to do.
Welcome to the Forum.

girija

[CTenaLouise]

http://dl4.glitter-graphics.net/pub/521/521124ow2gsitg8v.gif (http://www.glitter-graphics.com)

dear minkid,
I am very glad to see your post, please continue posting -
welcome to Neurotalk!

:Thanx:

[lindylanka]

Minkid,
Hi and welcome! Great that you have 'crossed over'!
We know that there are so many like you from the stats,
it's nice to get to know people though!
Lindy :)

[paula_w]

What a nice post. I can only say ditto to all of the above and thank you for adding your voice.

paula

[minkid]

Thanks very much for your kind thoughts.

By the way, I neglected in my original post to mention that my name is Hal. I grew up on a small dairy farm in Southeastern Idaho, drank from an old well, used pesticides and herbicides prolifically on the farm, and did a lot of welding in my teenage years as a Future Farmer of America ---- lol lol. I think that I engaged in just about every pursuit and lived in every condition that has been linked with increased risk for Parkinson's. Of course, I never gave any of it a second thought as I was growing up and engaging in those activities on the farm.

I now live in Wisconsin where we had a pretty significant snow storm last night. There are few things that are as much fun as getting up at 5:00 a.m. to move eight inches of snow off of the driveway. I am certain that many of you know what I mean...

I have five children, four girls ages 24, 21, 16, and 8; and one boy age 12.

I have wanted to join in discussions on many occasions, but for some reason I just could not bring myself to register for the site. The first couple of years after my diagnosis I was terrified that someone would find out that I had Parkinson's Disease, that it might affect my employment and who knows what else. I no longer harbor those fears.

You folks here have taught me not to be afraid. I have no idea where this Parkinson's journey is going to take me or what challenges and trials it will bring into my life. Nevertheless, I know that you folks are here for each other, and I find great power in what I have seen you doing for one another.

I look forward to interacting with you and getting to know you better.

Thanks again, Hal

[dbiker2]

I was terrified that someone would find out that I had Parkinson's Disease, that it might affect my employment and who knows what else. I no longer harbor those fears.

You folks here have taught me not to be afraid. I have no idea where this Parkinson's journey is going to take me or what challenges and trials it will bring into my life.


Welcome, glad you are here. I am 57 yrs old and have had PD for 28 years, half of my life. PD has taken me on journey's I would have never imagined. It is a lifetime journey as well as a minute to minute journey separately as well as together. One day at a time,

[chasmo]

Thanks very much for your kind thoughts.

By the way, I neglected in my original post to mention that my name is Hal. I grew up on a small dairy farm in Southeastern Idaho, drank from an old well, used pesticides and herbicides prolifically on the farm, and did a lot of welding in my teenage years as a Future Farmer of America ---- lol lol. I think that I engaged in just about every pursuit and lived in every condition that has been linked with increased risk for Parkinson's. Of course, I never gave any of it a second thought as I was growing up and engaging in those activities on the farm.

I now live in Wisconsin where we had a pretty significant snow storm last night. There are few things that are as much fun as getting up at 5:00 a.m. to move eight inches of snow off of the driveway. I am certain that many of you know what I mean...

I have five children, four girls ages 24, 21, 16, and 8; and one boy age 12.

I have wanted to join in discussions on many occasions, but for some reason I just could not bring myself to register for the site. The first couple of years after my diagnosis I was terrified that someone would find out that I had Parkinson's Disease, that it might affect my employment and who knows what else. I no longer harbor those fears.

You folks here have taught me not to be afraid. I have no idea where this Parkinson's journey is going to take me or what challenges and trials it will bring into my life. Nevertheless, I know that you folks are here for each other, and I find great power in what I have seen you doing for one another.

I look forward to interacting with you and getting to know you better.

Thanks again, Hal


Hal;
nice to make your aquaintance! my sainted wife Bonnie and I have 5 kids also.girls 24, 20, and 18 and twin boys 15.

I was Diagnosed with PD in 1990 at age 40, I had a bilateral DBS-STN at UCLA in 2002. I still get along with no meds, my major issue is balance, so I am starting Stalevo or sinemet soon.

My suggestion for you is to join PAN (Parkinsons Action Network) ( our lobbying organization) First, the annual meeting is great and you can put a face to many of the posters here. I am not sure if Wisconsin has a state coordinator, but you can always be an associate. It takes very little of your time.
You do not have to do any of the above if you feel like it is too much for you. There are scholarships to the meeting, (3/13-15) available for anyone interested in supporting PAN.

there are many opportunites to get involved, hope you avail yourself of them.

Again welcome to the group

Charlie Black

[reverett123]

And thanks for the vote of confidence. :)

You are in both good hands and good company here.

[paula_w]

Hal,

Hmmm....a cocktail of manganese, well water, and pesticides...what chance did you have?

And yet why doesn't everyone have it? Could be something else entirely.

Hope you stay and help us figure it out. If we find a cure, we might need a patent attorney..lol.....never say never!

;)
paula

[GregD]

Hi Hal,
Welcome to the forum. I'm 51 now and was dx'ed at 40. I'm on the usual mix of Sinemet, Sinemetcr and Comtan. At first my symptoms seemd to be advancing really fast. Now we seem to have them in check and I get along pretty good most of the time. I'm a woodturner now days and i understand what you mean about forgetting you have PD while engaging your mind otherwise. Hang in there and I hope we hear more from you.

GregD

[Jaye]

What a nice gift for Christmas/Hanukah/Yule/Losar/Birthday of Guru Gobind Singh/anything else festive coming up soon.

We tend to degenerate stepwise, I've heard and noticed, so perhaps you'll get to a plateau soon.

So glad to have you here. Glad also for others whose entrance I have missed. Come in and be as brothers and sisters among us. Maybe you think you need us; well, we need you, too. Keep talking.

Jaye :D

[chasmo]

thanks for the kind private message, unfortunately it says you cannot recieve replies. Check with one of the moderators to rectify this.

hints to dealing with your PD.

First, EXERCISE, the best person I have seen with PD (20 years +) is John Ball and he runs marathons.
Second , know that all of us are unique in our symptomology and our progression. This disease is pretty much what you make it. AS Harley says "I have PArkinsons; Pakinsons doesn't have me!"
Attitude is everything!
3. do not underestimate the mental aspects of this disease, especially depression. You most aggressively treat it if you ever have that problem.

I have a AIR Force Policeman inmy DBS group and this person was worried about M16 quals damaging their IPG's I told them how to get around the problem, the point being you can do just about anything if you put your mind to it!


Charlie