WORKING WITH PARKINSON'S DISEASE

 

I was diagnosed with Parkinson's Disease on April 27, 1999.  I hope to be living and working with PD for a long time. 

If your goal is to remain active in the workforce for as long as possible, here are some links with helpful information. 

You are your own best advocate - don't give up if continuing to work is important to you.

 

 

wORKPLACE ADVOCACY LINKS

 

Accommodating People with Parkinson's Disease

Young Parkinson's Handbook, Chapter 12: The Workplace

Parkinson's Disease: What You Should Know

Questions and Answers About Parkinson's Disease

ADA Homepage

 

For When it's Time to Quit

Office of Social Security Disability

Helpful SSDI Procedural Checklist from a Successful Applicant

 

 

 

 

RESEARCH, ADVOCACY & GENERAL LINKS

 

  Parkinson's Action Network

   Grassroots Connection

   Michael J Fox Foundation

   Northwest Parkinson's Foundation

  People Living with Parkinson's

●  The National Parkinson's Foundation

   The Parkinson's Disease Foundation

●  The Parkinson's Alliance

   Young Onset Parkinson's Association

   The American Parkinson's Disease Association

●  The Parkinson's Institute

 

what you can do About Parkinson's Disease

 

Workplace Advocacy

If you are an employer, be aware that Parkinsonís Disease is covered under the Americans with Disabilities Act (ADA) and as such, must be reasonably accommodated.

 

If you are a worker with PD, know your rights, including the fact that PD is covered under the ADA.  Also, every state has their own disability criteria. For instance, Washington State disability laws are stronger than the federal ADA. You must be a strong advocate for yourself.  Be clear and specific about communicating your needs to your employer. Arm yourself with information and be prepared to educate.

 

Research Advocacy

The Parkinsonís Action Network has a goal of five years to find a cure.  Towards this end they lobby  for  increased spending for stem cell research.

 

Contribute financially or write your representative.

 

 

 

Facts About Parkinsonís Disease

 

PD is a slowly progressive, chronic neurological disease that affects a small area of cells in the mid-brain known as the substantia nigra. Gradual degeneration of these cells causes a reduction in a vital chemical known as "dopamine" and  results in PD.

 

The cause of PD is unknown. Most people with primary PD have idiopathic PD, meaning the exact cause is unknown. 

 

There is no cure  for this disease that eventually ends in incapacitation.  But a cure is close due to current research advances.

 

It is estimated that there are up to 1.5 million Americans affected by Parkinson's Disease, more persons than those suffering from Multiple Sclerosis and Muscular Dystrophy combined. 15% of PD patients are diagnosed before age 50. Parkinson's disease affects one of every 100 persons over the age of 60.

 

PD is treated with dopamine replacement drugs, both organic and synthetic.  Sleepiness and sometimes a tendency towards obsessive/compulsive disorders are side effects of medication. Various surgical treatments are available for certain symptoms as they become more pronounced and less tolerable.

 

The decrease in dopamine associated with PD can  produce one or more of the most  noticeable symptoms of Parkinson's disease, including 1) resting tremors on one side of the body, 2) generalized slowness of  movement , 3) stiffness of limbs, and 4) gait or  balance problems.

 

Other possible symptoms may include: small cramped handwriting, lack of arm swing on the affected side, decreased facial expression, lowered voice volume , feelings of  depression or anxiety, episodes of feeling "stuck in place" when initiating a step (called "freezing"), slight foot drag on the affected side.

 

Loss or slowing of cognition and executive function ability is a common though little researched area of PD symptom.  Visit CLOGNITION for more information on PD and mental health issues.

Education gives Hope
Advocacy increases Strength
Knowledge is Power

 

Please drop me a line!

 
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Last Updated Monday January 23, 2006