Parkinsons’s Disease
and PCNSA Members

Et syngende folk,
et lykkelig folk

A singing people,
a happy people

— Motto of the
Norwegian Singers Association

 
 

Other Norwegian Singing Associations:

Norwegian Singers’
Association of America

Nordic Singers’ Association
(Nordisk Sangerforbund)

 
 

Other Links of Interest
to Our Members:

Parkinson’s Disease

By  BRIAN RASE  (June 2013)
EUGENE, OR
This is a followup to the comments I made in the “for the good of the order” segment of the business meeting of the annual PCNSA Sangerfest at Tacoma, offering my observation of a relatively high incidence of Parkinson’s Disease in our membership. My thanks to President Jeff Highland and the Board of Directors for their help and guidance in a process to bring this to the membership.

Please note that my intent is not to make this a PCNSA-Parkinson’s Disease Support Group, but to offer a few thoughts from my experience with Parkinson’s which, I hope, may help many of us — with the disease or not — deal with aspects of it. This is not medical information or advice and should not be construed as such or a substitute for normal communications and relations with one’s medical professionals.

My name is Brian Rase and I am: (1) a Registered Pharmacist by profession, now retired; (2) the son of parents who were both diagnosed with Parkinson’s Disease; (3) active in Parkinson’s support and research programs; (4) an advocate for a number of individuals with Parkinson’s Disease; and (5) I carry the diagnosis of Parkinson’s Disease myself. I believe I have had exposure to and experience with the disease in my career and life, which
probably exceeds that of most in the general population but does not make me an expert.

We, as members of an ethnic northern European genealogy — Norwegians, the other Scandinavians, northern Germans and surrounding populations — carry a prevalence of Parkinson’s Disease which is slightly but statistically higher than the general population.

Given that factor, the aging of our group, which in itself produces a higher incidence of Parkinson’s Disease, and varied familial and environmental factors, we might expect to see a slightly higher incidence in our membership. Studies suggest that our Sangerfest group of 132 singers might have one or two members with a diagnosis of Parkinson’s Disease. Considering the number of conversations I have had and observations I have made, admittedly somewhat subjectively, I believe the incidence of Parkinson’s Diseasee in the PCNSA is higher than the general population by a factor of three or four, and for what reason, I do not have a clue.

That being said, “we are what we are,” so let me put on my advocacy hat and conclude with a few thoughts from my own experience.

  • SEEK out a physician/neurologist with a specialty in movement disorders who has additional training and experience in treating Parkinson’s Disease.
     
  • PARTNER with, question and challenge your physician to keep you informed on the most up-to-date information on medications and treatments, and include some of your own research.
     
  • STAY PHYSICALLY ACTIVE with exercise, walking, yoga, tai chi, ping pong, dancing, swimming, golf, deep breathing, physical therapy and any other activity of daily living that keeps you moving.
     
  • STAY MENTALLY ACTIVE with reading, puzzles (crossword, sudoku, etc.), getting plenty of sleep (CPAP if needed), communicating with others (family, friends, support groups), meditation (if you’re into that), and learn as much as you can about the disease and treatments which will help. Don’t let this disease of ours define you.
     
  • KEEP ON SINGING. Our voices are not exempt from the effects of Parkinson’s Disease and one of the best ways to keep them strong and active is to sing, and sing loud and often. It is also helpful as we sing some of those hard-to-pronounce (well, for some of us) Norsk words, that require a little different twist of the tongue and lips.

Finally, and on a personal note, and I know this is not an exclusive, but The Norsemen are a major part of my support system. They helped me through my major cancer fight over five years ago and they are helping me through this one. Apart from the fact that I enjoy singing — and singing with my friends — this is a major part of my therapy, and I will do it as long as I can.

Please feel free to contact me with any comments and thoughts at:  <b.erase123@gmail.com> or 541-686-2733 and check the following links to some select information resources.

Parkinson’s Disease Information and Resources
Web Site Links:

 

The following two organizations are more involved in genetic research: