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Viewing Page 1 of 2 (Total Entries: 25)

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September 15th 2010
10:19:21 AM
What is your name?  

Nadine Ayers

How did you find this website?  

living well with Parkinson Disease book

Where are you from?  

Battle Ground washington

Please enter your comments?  

My adult grandson went to the library and picked out this book for me about two weeks after I was diagnosed with PD. I did not know he had ordered it until he brought it home. I consider him my gardian angel because the hope and out look for the future depicted in this book was what I needed after reading all the literature given to me by the doctor.
I am 69 and have been lucky in that I had a MD who understood my symptoms (which did not make any sense to me as I thought PD always started with shaking, my did not). I was started on meds immediately, even before MRI or Neurologist appointment. I caught mine in an early stage and most of the symptoms are controlled by meds now. But thanks to the book I now can face the future with a little less fear and a lot of enthusiam that by doing the right things I can delay the inevable. thanks Nadine

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March 20th 2010
11:34:34 AM
What is your name?  

Marco

What is the title of your website:  

Jeune Parkinson Québec

Type a quick description of your website:  

News and information

How did you find this website?  

LIVING WELL WITH PARKINSON'S DISEASE

Where are you from?  

QUÉBEC , CANADA

Please enter your comments?  

I have 40 and i live with my friend (James) Parkinson for 7 year. Accidentally I found your book in a antique book shop. I just finish to read the book last night at 3 am . By chance, I realize that we are not alone living with the consequence of Parkinson. It's important to me. Thank you

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February 24th 2010
10:34:02 PM
What is your name?  

Natalie

How did you find this website?  

Sort of through the book PD for Dummies, but they had the wrong address

Where are you from?  

Suburbs of Chicago

Please enter your comments?  

I just turned 50 and was diagnosed about a year ago. I am starting a YOPD support group in the Chicago suburbs, with the help of the local APDA. If anyone is in the DuPage County area, and interested, e-mail Natalie at nlipp2@gmail.com. I would also be appreciative of any advice that other support group leaders could give, especially as to what people seem to want in a support group, and how you run your groups, decide on topics etc.

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December 27th 2009
06:49:15 AM
What is your name?  

David Fryer

How did you find this website?  

FRom the book "Living Well With Parkinson's"

Where are you from?  

Mission, Britiah Columbia, Canada

Please enter your comments?  

I am currently 55 years old and was diagnosed with PD in 2003. I recently (September 09) had a bilateral DBS surgery in Vancouver and started programming the unit in November. I would like to talk to others that have had this procedure and compare notes on the depression issues I am having post-surgery.

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August 28th 2009
08:20:59 PM
What is your name?  

Tricia

How did you find this website?  

Just read the book "Living Well With Parkinson's Disease"

Where are you from?  

Greencastle, Indiana

Please enter your comments?  

I truly appreciated the book I recently purchased. I was diagnosed with tremors 7 years ago. And diagnosed with YOPD 2 years ago. Really wanted to speak with others who may be going through what I am.

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July 5th 2009
07:45:57 PM
What is your name?  

Michelle

How did you find this website?  

From reading Living Well with Parkinson's

Where are you from?  

Kalamazoo MI

Please enter your comments?  

I was diagnoised this January with Parkinson's I am 40 years old. I suffered for three years with nurlogical issues that seem to go undiagnosed. Cleveland Clinic finally gave me an answer and help. I was training for the Chicago Marathon when I had a running " accident" I later learned it was the first time I froze running up a hill. That was the begining. I have never been in a chat room before. I was reading Living Well with Parkinson's and felt inspired to reach out to others that may understand how I am feeling.

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June 26th 2009
11:10:17 AM
What is your name?  

Meredith

How did you find this website?  

search engine

Where are you from?  

Arkansas

Please enter your comments?  

I am a thirty-four year old wife and mother of three. I was diagnosed with YOPD eight months ago. There are no support groups in my area so I receive all my support online. I have had to go part-time and I am very worried that I will have to stop driving. I don't want my life to be limited, but I already see it happening. The disease has started to spread to my left side. I didn't expect that to happen so quickly. If there is anyone else out there who can relate I would love to hear from you. God bless you all.

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October 28th 2008
02:54:40 PM
What is your name?  

chad

What is the title of your website:  

Parkinson Profile

Type a quick description of your website:  

Social Networking site for PD folks with one of the only conference/chat rooms with sound

How did you find this website?  

By going to PLWP2 and reading their message board

Where are you from?  

Central Coast of California

Please enter your comments?  

Just wanted to see Michael & Gretchen's website and wish her the best with the DBS surgery.

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October 4th 2008
04:36:41 AM
What is your name?  

Linda McDowell

How did you find this website?  

By reading the book Living Well With Parkinsons Disease

Where are you from?  

British Columbia, Canada

Please enter your comments?  

Hoping to meet some people to share my thoughts and feeling as I make my way through this challenge that has been given to me.

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July 11th 2008
07:57:41 PM
What is your name?  

lois

How did you find this website?  

From reading the book LIVING WELL WITH PARKINSON'S DISEASE

Where are you from?  

Parkersburg,wv

Please enter your comments?  

I am a retired elementary teacher who has been diagnosed with parkinson's Nov.9,2006. Iretired in the spring of 2003.
I am a retired teacher who was diagnosed in 2006 with parkinson's. I have been reading lots of books on the disease and have joined a small parkinson's support group
which meets once a month.I have never participated
in online chatting rooms before.

[Flamed

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May 22nd 2008
10:37:09 PM
What is your name?  

Paul Cody

What is the title of your website:  

" PARKINSONS" TTHEMED PARTIES FOR THE CURE

Type a quick description of your website:  

The largest online Perfect Party Store in the world to benefit Parkinson's Research

How did you find this website?  

Arizona Parkinson's Foundation

Where are you from?  

Canada

Please enter your comments?  

From the opening text of my educational fund raiser for the Team Fox.

FROM HEALTHY AND FINE TO FEAR OF THE UNKNOWN IN 3 DAYS
"On April 29/08 I thought I was happy and in great health except for the pain of Shingles on my thumb.. On April30th/08 I fell down 17 steps on an oak spiral staircase on my head. At emergency I had a Cat Scan and was told my head was fine. A little sore but back to normal , I THOUGHT. On May 1st /08 I had an earlier appointment with a very respected neurologist concerning my long lasting Shingles. She confirmed my head was fine, my thumb would get better but would I take a few tests with her.
Seemed odd, since I was so fine. Then she said "YOU HAVE PARKINSON"S"
I now introduce myself as James Trussell, Parkinson's Advocate does.

"Hello, I'm Paul Cody and I have Parkinson's disease. " We must find the cause and a cure for this illness. I NEED YOUR HELP AND YOUR MONEY."

IT IS SO ENJOYABLE TO HELP AND HAVE A HUGE PERSONAL IMPACT
Simply while enjoying your Perfect Party full of fun and laughter mention to your guests" DID YOU KNOW that the Perfect Party we are having right now supports PARKINSON'S RESEARCH " Then show them how at this sitethey . By doing this YOU PERSONALLY become a tremendous force to keep the public spotlight on, and keep the conversation going about expanding the support of The Michael J Fox Foundation's Parkinson's Research.

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February 4th 2008
08:32:37 AM
What is your name?  

Carol Bradley Bursack

What is the title of your website:  

Minding Our Elders

Type a quick description of your website:  

I am a writer, speaker and columnist on elder care. "Living Well With Parkinson's" was sent to me and I reviewed it for my newspaper column and a blog.

How did you find this website?  

Through a search because of the book

Where are you from?  

Fargo, ND

Please enter your comments?  

I enjoyed "Living Well With Parkinsons" and thought you may have a use for some clips from the reveiw as well as some printouts from the blogs. I can direct you if you choose. Just email me at the address above. Excellent book, by the way. Carol

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June 7th 2007
03:01:56 PM
What is your name?  

Andrew Palmer

How did you find this website?  

Met Gretchen and Michael a few years ago and visited them when we came to florida in2005

Where are you from?  

Devon England UK

Please enter your comments?  

Well done a good site.
We need many more people like you to show the public what struggles we have in life getting appropriate care and medication
Keep up the good work

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August 15th 2006
10:47:31 AM
What is your name?  

pete boot

What is the title of your website:  

fill your head with rock

Type a quick description of your website:  

raising the profile of parkinsons

How did you find this website?  

link

Where are you from?  

uk planet earth

Please enter your comments?  

just for fun go to www.fillyourheadwithrockinternational.com
and listen to the opening sound bite

pete

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July 12th 2006
09:53:47 AM
What is your name?  

Mary Kellerman

Where are you from?  

Kansas

Please enter your comments?  

Found this site thru Mike and Gretchen at the NPF YOPD Conference in D.C. I am interested in joining, however there is no submit button on the page site, I will check back. I believe the more awareness available the more help we can receive towards a cure, and in the meantime the more understanding the public can be towards this dibilatating disease. There are so many misconsiptions regarding P.D., and people need to know it does not afflict everyone the same way. Keep up the great work!! Love, Mary

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November 20th 2005
09:35:49 AM
What is your name?  

PETE BOOT

What is the title of your website:  

FILL YOUR HEAD WITH ROCK INTERNATIONAL

Type a quick description of your website:  

TWO DAY ROCK CONCERT BRINGING BOTH FUNDING AND MORE IMPORTANT SHOWING LIFE GOES ON, AND ON , AND ON......BUT YOU MUST WANT IT TO GO ON!

Where are you from?  

PLANET EARTH.......UNITED KINGDOM

Please enter your comments?  

Today i knew was going to be good, yes i was right, i have found and made new friends, lets hope we can find new paths to walk, oh and lets all sing on those paths it makes the journey nore fun...............
THE WORLD OF GOOD TO YOU ALL

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October 28th 2005
12:56:07 PM
What is your name?  

susan

How did you find this website?  

google

Where are you from?  

vermont

Please enter your comments?  

Looking for some other folks with YOPD-I've been in this mess for 5 years - diagnosed at 35y.o.; symptoms are progressing some more. I'd love to find some help with nutrition, my medication combo seems to have sent my metabolism into low gear- can't seem to shake off about 40 lbs of excess me. I've lost over 35 lbs with some serious nutritional changes, and I work out almost every day (3 days of weight training and 5-6 days of cardio) Am on Requip, Artane, Stalevo, and Sinemet, as well as Clonazepam and Lexapro for the accompanying depression/anxiety. Any ideas where I could get some help with this problem-so far noone seems to be able to work with my active lifestyle and my meds in a cohesive manner.

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June 11th 2005
03:24:08 AM
What is your name?  

mia de coninck

What is the title of your website:  

parkinsonhuis ('huis' is the dutch word for 'home')

Type a quick description of your website:  

a place where pp can find each other

How did you find this website?  

a message on 'young_parkinsons'

Where are you from?  

the netherlands (and before that : belgium)

Please enter your comments?  

i found this website on my search for couples who both have parkinsons disease (and i found there are few!) i think i found soulmates here because we too found each other after being diagnosed and also have a website trying to give information and stimulate contacts between pp. i've learned from your site! hope we can communicate in future!

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April 9th 2005
11:10:39 PM
What is your name?  

Steve Hochberger

What is the title of your website:  

Southeast Parkinson Disease Association (SEPDA)

Type a quick description of your website:  

A chapter of the National Parkinson Foundation Serving Central and Northern Florida

How did you find this website?  

other PD websites

Where are you from?  

Orlando, FL

Please enter your comments?  

I am the President of SEPDA and work with other advocate groups. I am also the Personnel Director of the Parkinson Pipeline Project. We are looking for volunteers to become Patient Advisors - please visit out website for more info at http://www.pdpipeline.org and I look forward to working together.

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March 28th 2005
06:33:19 AM
What is your name?  

MICHAEL R. GRAHAM

What is the title of your website:  

COLORADO ONLINE PARKINSON'S EDUCATION AND SUPPORT INC.

Type a quick description of your website:  

EDUCATION AND SUPPORT GROUP WE USE COPES MERCHANDISE MART TO RAISE MONEY FOR SEVERAL DIFFERANT PARKINSON'S RESEARCH ORG.

How did you find this website?  

MICHAEL CHURCH

Where are you from?  

COLORADO

Please enter your comments?  

MICHAEL & GRETCHEN KEEP UP THE GOOD WORK YOU ARE INSPIRING INDIVIDUALS GLAD TO HAVE YOU IN MY FRIENDS LIST

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