Personal Stories
Mr. Shaky Paws Top 10 Recommendations for PWP's
06/21/2012
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. Visit here for a list of MDS’s in your state. If your insurance company prevents you from seeing an MDS, let them know that this is a serious problem for you and seek a referral. If you cannot obtain one, let your local support group leader know so they can report it to the regional PD organization for follow up. If you have this type of insurance company problem or if there are no MDS locations in your area, locate a neurologist who has demonstrable experience working with PD.
Exercise
There are many things related to PD that are beyond your control. Getting regular exercise is something you can control that can make a big difference in your symptoms and your quality of life. Establish a plan with your MDS that is appropriate based on your age and condition. Visit here for helpful suggestions regarding exercise and living well.
Participate in clinical research trials.
When you do this you accomplish two things. First, you help with the advancement of knowledge that will lead to a cure. Second, you learn things that may help you. For information on specific studies including availability, location, and timing of research trials visit PD Trials or the Fox Trial Finder.
Mrs. Shaky Paws Top 10 Recommendations for Care Partners
06/11/2012
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.
Communicate
- It is crucial to keep the lines of communication open. Tell each other what you are thinking and feeling.
- Share the things you are worried about and problem solve together. Express your love for each other frequently.
- Catch each other doing little things that provide an opportunity to express appreciation.
Learn
- Learn as much as you can about PD and related issues.
- Stay engaged by participating in support groups and seminars.
- Participate in clinical research trials with your partner in order to help yourselves as well as others.
- Understand and accept that PD is a moving target and that your partner’s evolving condition/needs as well as your own will require flexibility and adaptation.
Flanked by Angels
03/19/2012
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).
My curiosity was peaked. Just three years prior, I thought I had skied for the last time. It was about this time when my brain started to fail in sending the proper signals to the right side of my body; leaving me at the middle of the mountain waiting to be driven to the bottom by the ski patrol. The pain of that moment was indelible.
Ginny Fraser's Three Steps to Living Happily with PD
12/12/2011
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 learned so much from my friend. I did not realize it at the time that I was acquiring the knowledge. Her influence on me was subtle, which was her way. I have dubbed three of Ginny's lessons Ginny Fraser's Three Steps to Living Happily with PD. They exemplify her grace in adapting to her physical changes.
Was I Dreaming?
09/19/2011
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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