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Voices from Parkinson's community
Share Your Story
April is National Parkinson Awareness month. It would be great for you to make your voices heard throughout the community. There are a number of ways you can let the public be aware about Parkinson's Disease. You can write letters to the editor or your Congressman making them aware of the needs of the 17,000 people in Colorado who have Parkinson's. It is important to keep the needs of the Parkinson's community in the forefront.
Letting them know that you are living triumphantly with this condition can be very inspirational to the state of Colorado. By making the public aware of how important the programs that the Parkinson's Association provides, will help expand the programs in your community. Let them know how active you are. The exercise classes, tremble clef singing groups and dance classes all add to the quality of life for those that have Parkinson's. Make your voices heard telling how these different programs affect your lives. You can look at our sample letter to help you. Click here to read it.
Be proud of being you!
Fondly,
Cari Friedman, LCSW
Patient and Family Services Director
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1.
Tuesday, 10 July 2012 16:54
posted by
Tim H
I would like to share my adventure with PD. I was dx'ed 23 years ago and was actually to the point where I had given up all of the activities that I loved, Mountain Biking, Motorcycles. I have participated in numerous trials with nothing groundbreaking. I have been treated by Dr. Leehey for awhile and for about five she would mention DBS. My response was always the same " not me , no vulcan mind probe for me". Well about a year ago I said yes and my final surgery was six weeks ago. It has absolutely changed my life. I don't drag a leg, no head shake, no tremor, no dyskenesia. I'm almost normal. Yes it was scarey, no it wasn't easy, yes I would recommend it.
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2.
Thursday, 19 April 2012 02:49
posted by
Mary Searson
Thank you to the staff of PAR, all of you have been very helpful, with the start-up of our support group here in the Grand Junction area. We have all enjoyed the, "Doc's on Call", workshops
you have sponsored, to bring information to the outlying areas. With limited resourses available on the Western Slope, it has been greatly apriciated. There are only 3 neurologist in the Grand Junction area. I do know about a movement disorder specialist who will be joining the Neurological Assocites of Western Colorado,comeing in Aug. 2012.
We are still having difficulty getting the word out about our group. Through Dr. Burnbaum, who has given my name and number out to other patients he has referred to UCH, for DBS, I have met a number of PD patient's who have hibernated themselves in there home, due to the extent of there symptoms, rather than search out any assistance, either via equipment or just moral support. All the reserch, emphasises, the only way to slow the progress of PD, is to stay as active as possoble for as long as possible. I have been a little guilty myself of staying home moore, untell this past Feb. when I flue to Ill. and surprised my oldest brother and wife on there 50th wedding aniversary. Since I was able to make it through 2 major airports, plus fly on a 6 seater, prop plane, into Quincey, Ill., I though I was ready for NASCAR and Las Vegus, "wrong". Took a week the get over the exertion of the trip. I have since learned I most except some limitations.
Back to parkison's awareness, along I-15, just south of Beaver, Utah, ther is a billboard sign, in the mix of casino aadds, Michael J Fox Foundation. With the wind blowing 50 miles and hour and trucks screaming by at 80 miles an hour, I finally got a picture and posted it on my face book page.
I have sent a letter to the editor of our local news paper, but it seems, unless the diagnoses has the, "big C," attacted to it no one is interested. Have also, applyed to King Suppor and City Market stores, for a donation compain, without any response. KREX Television, has conctacted me on a news story here in April,on PD, but we are waiting for one of the neurologist, for an interveiw. It took 4 days for Dr. Burnbaum to return my call, when I had a problem with increase neck spasms.
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3.
Tuesday, 17 April 2012 17:37
posted by
nancy v machin
Just a reminder that PD is progressive
neuro illness which has good and bad days, from my experience with my late
husband, who passed at 70, after almost
17 years with PD. Each day counts. Unconditional love counts. Exercise of
body and mind count. Spiritual connection counts. Just a reminder that
when a speed bump comes along, be prepared for difficulty and hardship and how you wish to get through it. In other words, what is the meaning of life
to you and how do you cope the best in the time of crisis. We are dealing with a progressive illness, unique to all, and how will you face those speed bumps?
Sincerely.
njvm
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