Date: May 14, 2014
The Cheyenne PD Support Group applied for and was awarded a PCORI grant to study 'Quality of Care for the Wyoming Parkinson's Community'.
At this point, we are really just doing research on feasible ideas on which to do research.
The whole reason for PCORI grants is to make sure that the ideas being researched are ideas that have been brought up by 'shareholders' of the PD community. Those shareholders being: the PD patients themselves, their caretakers and family, the medical personnel and tertiary medical personnel (such as physical therapists, massage therapists)
PLEASE! WE NEED YOUR IDEAS!
Please see the attached information on the PCORI research grant here.
Do you ever get the feeling that you are working for your home? I am not talking about the many years you spend paying for your home. The question is how often do you find that your home makes every day life easier for you?
Fall Prevention ...
Falls can be very frightening to individuals with Parkinson’s disease and their care partners. They generally are dramatic and symbolize a loss of control. One of our major goals as an organization is to educate individuals living with Parkinson’s disease on fall prevention and identify ways to prevent falls.
Be sure your doctor is a movement disorder specialist/neurologist (MDS).
Even if your doctor is a neurologist, this does not mean that he/she has the experience or education with movement disorders that will enable them to provide the specific care you need.
Live in the moment
- Learn from the past, plan for tomorrow, but live for today.
- Don’t put off those activities that you have talked about doing “some day”.
- Make time for fun.
Care partners, care givers, care takers all mean the same thing. You experience life together. In good times and challenging times. In sickness and in health. Throw in the part about chronic illness. When one of you is diagnosed with Parkinson’s disease, you both live with it. Most care partners focus on the person with Parkinson's well-being before thinking of taking care of oneself.
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.
As I sit here remembering one of the best ski outings I have experienced in recent years, I decided to share my joy with others affected by Parkinson’s disease. The January Parkinson’s Association of the Rockies’ newsletter featured an upcoming Ski Program for people with Parkinson’s sponsored by the Breckenridge Outdoor Education Center (BOEC). ...
At the beginning of the New Year many people make resolutions. A common theme is taking care of your health by watching your diet, quitting smoking, drinking less alcohol and starting an exercise program. Sound familiar? "Take care of your health". What does that mean? In the Parkinson's community it is important to include exercise in your daily routine.
This posting is a snippet of the Recently Diagnosed with PD blog, written by Betsy Vierck.
Almost three years ago I was also diagnosed with Parkinson's. Ginny and I became refuges for each other. We have been extremely tight, speaking in a language that non-PDers can never understand.
I woke up Monday morning to a slight buzz throughout my body. “Today is the day!” I thought. I rode the BX bus from Boulder to Market Street Station, then took a quick 16th Street Shuttle ride, and walked a block or so to my destination. The buzz was still present as I walked through the door of the Colorado Ballet and read the note saying “Rhythm & Grace meets in Practice Room C.” I was 30 minutes early for the noon class. “Today is the day!” Wow!
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