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Young - Onset Parkinson's Disease

Parkinson's disease (PD) is typically thought to be a disorder of the elderly. The average age of onset for Parkinson's disease (PD) is approximately 58 years in the U.S. and elsewhere. However, the first symptoms (such as tremor, slowed movement, or decreased dexterity) can arise much earlier in life; some cases of PD have clearly developed up to three decades earlier than its typical age of onset. Most estimates indicate that no more than 5-10% of PD cases begin under the age of fifty. When patients develop PD in this age range (sometimes as early as in their twenties or thirties), this is generally referred to as "young-onset PD". Though distinguished by its age of onset, this disorder appears in most respects to be identical to PD beginning at an older age. The clinical features and response to medications do not differentiate it from development of PD in the elderly. The loss of nerve cell generating dopamine in the brain is the same for both younger- and older-onset PD. There are some differentiating characteristics, however. PD beginning under the age of 50 has less of a tendency to develop concomitant cognitive impairments or dementia than when the disorder begins in older years. There may be an increased tendency for the chronic use of levodopa to result in involuntary movements (dyskinesias) in the young-onset patient.

The disabilities of young-onset PD differ from problems experienced from the same disorder beginning later in life. The impact of young-onset PD affects a patient's livelihood, family roles, friendships, and enjoyment of life in sometimes a more extreme manner than for an older person, who might be retired from work and unburdened with young children. It is obvious from discussions at support groups involving young-onset patients that their daily struggle with PD is often quite different from that experienced by older subjects. Sometimes the need for a patient to inform his or her young children, employers, and peers about this uncommon occurrence of PD is very challenging. Even for patients affected with relatively mild forms of it, PD has the "persona" of exaggerated aging and physical deterioration. As a result, sometimes work or other activities are unfairly restricted as a result. The tremors often associated with PD can be misinterpreted by others as either anxiety or physical frailty. Difficulties that PD can cause for the ease of communication by voice or handwriting can only add to the "cosmetic" stigma of PD.

Fortunately, the same drugs and other treatment options useful in older patients can be highly effective in young-onset PD. Those making use of medications needs to give consideration to the risk for long-term outcomes such as dyskinesias. For this reason, many clinicians believe that levodopa use should either be restricted (if possible) or that a dopaminergic agonist be used together with it. Young-onset PD has an increased risk to be a hereditary disorder. If other first-order family members are also affected with young-onset PD, a search for the very rare genetically mediated forms of PD may be warranted. A young onset of PD also calls for a careful investigation of possible alternative diagnoses. Since several conditions can mimic PD, a thorough examination by a neurological specialist is warranted. This evaluation sometimes uses testing such as an MRI scan of the brain to make a correct diagnosis. Fortunately, most persons even at a young age with Parkinsonism have nothing more than PD. Since many (if not most) people with PD continue to respond well to medications over long periods of time, this disorder is generally deserving of reassurance to the patient from the treating physician.

Peter A. LeWitt, M.D.
Professor of Neurology, Wayne State University School of Medicine
Clinical Neuroscience Center, Southfield, Michigan
Past Chairman, Professional Advisory Board,
MPF Past President, Board of Directors, MPF.

Check out our list of Young Onset Support Groups.

Tips provided by Board Member, Anne Hansen

To find the Michigan Parkinson Foundation of Facebook, simply type “Michigan Parkinson Foundation”  into the search bar.  The MPF fan page should be the first result.  There is a link to the right that says “Become a Fan.”  Just click on that and you’re there!  Or you can click on the MPF logo and become a fan from there.

Michigan Parkinson Foundation’s Facebook page can be used to spread the word to family and friends about the May 22 and May 23 I Gave My Sole to Parkinson’s Walk-a-thon and 5K Runs.  Here are directions:

  1. Go to the MPF Facebook fan page through your Facebook account.
  2. Click on the link on the upper left of the page “Suggest to Friends.”  It’s right under the MPF logo.
  3. Click on which friends you’d like to invite.
  4. Click on “Send Invitations.

A message will be sent to your selected friends asking them to become a fan.

Michigan Parkinson Foundation would like to welcome the following new Facilitators:

Alpena: Mark Beegle
Mark has earlier onset PD and has been fairly recently diagnosed. He attended the Walk-a-thon we held in Okemos last fall and pledged to do more. He is enthusiastic with the backing of an energetic family.

Port Huron: Kelly DiNardo, RN
Kelly is a nurse who works in the 55 Plus Program at Port Huron Hospital. She is actively involved in a number of community education programs, including other support groups.

Tri-City/Saginaw: Julie Schmidt, Social Worker
Julie works at Saginaw County Commission on Aging and has a tremendous background in working with groups. We are pleased to see such a dynamo on board.

Again, we thank the following people who have participated for so long as Facilitators:

Alpena: Georgene Anderson and Donna Precord (who will still remain active in the group). Both have been members for over 10 years.

Port Huron: Luann Kletner Black, MSW, who took over the group leadership in 2002. She heads several departments at Port Huron Hospital, now.

Tri-City/Saginaw: Joan Jackson, SW, who has been a facilitator and MPF Board Member (Support Group Liaison to the Board).

Richard Merson, Ph.D., ChairmanChairman: Richard Merson, Ph.D., CCC-SLP,
Coordinator of Research and Special Projects, William Beaumont Hospital

Dr. Merson also holds a seat on the Michigan Parkinson Foundation Board of Directors as Chairman of the Prof

Richard Merson, Ph.D., ChairmanChairman: Richard Merson, Ph.D., CCC-SLP,
Coordinator of Research and Special Projects, William Beaumont Hospital

Dr. Merson also holds a seat on the Michigan Parkinson Foundation Board of Directors as Chairman of the Professional Advisory Board

Brian CooperBrian Cooper, OTR
Brian is an Occupational Therapist with Residential Home Health and is certified in BIG LSVT Therapy. Formerly with St. John Hospital, he has actively participated in MPF’s Michigan Parkinson Initiative Multidisciplinary Clinics and has given presentations at MPI symposia. Brian has also been co-director of the 5K at the Eastside “I Gave My Sole to Parkinson’s Walk-a-thon and 5K Run.”

Denise Van Etten>Denise Van Etten, RN
Denise is the Nurse Clinician for Movement Disorders and General Neurology, Michigan State University, Department of Neurology. She is a graduate of Lansing Community College and Michigan State University and is certified in DBS programming. Denise has given numerous educational programs and has participated in MPI clinics and symposia.

Laura ZeitlinLaura Zeitlin, LMSW
Laura is the Clinical Social Worker for the Movement Disorders Surgery Program at the University of Michigan Health System and the coordinator for outreach education. She holds degrees from Antioch College and University of Michigan and worked for many years in the HIV/AIDS area. Laura has been an active lecturer on a variety of topics both on a local and national level.

We wish to thank outgoing members for their dedication and committed service to the Professional Advisory Board: John Buday, MD; Rochelle Anixt Gold, MA, MSW, CSW, ACSW; and Linda Mondoux, RN, MS.

essional Advisory Board

Brian CooperBrian Cooper, OTR
Brian is an Occupational Therapist with Residential Home Health and is certified in BIG LSVT Therapy. Formerly with St. John Hospital, he has actively participated in MPF’s Michigan Parkinson Initiative Multidisciplinary Clinics and has given presentations at MPI symposia. Brian has also been co-director of the 5K at the Eastside “I Gave My Sole to Parkinson’s Walk-a-thon and 5K Run.”

Denise Van EttenDenise Van Etten, RN
Denise is the Nurse Clinician for Movement Disorders and General Neurology, Michigan State University, Department of Neurology. She is a graduate of Lansing Community College and Michigan State University and is certified in DBS programming. Denise has given numerous educational programs and has participated in MPI clinics and symposia.

Laura ZeitlinLaura Zeitlin, LMSW
Laura is the Clinical Social Worker for the Movement Disorders Surgery Program at the University of Michigan Health System and the coordinator for outreach education. She holds degrees from Antioch College and University of Michigan and worked for many years in the HIV/AIDS area. Laura has been an active lecturer on a variety of topics both on a local and national level.

We wish to thank outgoing members for their dedication and committed service to the Professional Advisory Board: John Buday, MD; Rochelle Anixt Gold, MA, MSW, CSW, ACSW; and Linda Mondoux, RN, MS.

At the Annual Meeting of the MPF Board of Directors, the following individuals were elected to Officer and New Member positions:

New Board Members

George Edwin
Edwin B. George, M.D., Ph.D.
Chairman

Peter A. LeWitt, M.D., President
Peter A. LeWitt, M.D. President

William Suminiski
William Suminski
Vice Chairman

Lawrence Millman, Treasurer
Lawrence Millman, CPA
Treasurer

Nanette Michaels
Nanette Michaels
Secretary

New Members

Jeff Appel, Esq.
Mr. Appel is an attorney in private practice, specialized in the field of federal administrative law, representing individuals seeking social security disability benefits. He is the chair of the Federal Bar Association Social Security Law Committee and a frequent lecturer to medical and legal groups on disability issues. He is a graduate of the University of Michigan and Emory University School of Law. Mr. Appel is well aware of the effects of Parkinson’s disease, having a relative who is diagnosed.

Linda GrapLinda Grap
Linda Grap is the director of Senior Health Partners, a nationally recognized community collaboration in Battle Creek. She has been a strong advocate for the Parkinson community in this city through her numerous contacts and affiliations. She was the Battle Creek project coordinator for the National Aging in Place Initiative, conducted with Partners for Livable Communities to develop blueprints creating “aging friendly” communities. Linda has received numerous awards from local and national associations for her service. She is a graduate of Central Michigan University and holds a language certificate from the Alliance Francaise in Paris.

Amy JacksonAmy Jackson
Amy Jackson has lived with Parkinson’s for over 19 years. Her husband, Thomas Jr., recently passed away, and Amy lovingly cared for him at home. They became active in the Detroit PD Support Group in 1995 and were facilitators from 1998 until 2009. They received MPF’s Ellen Otto Service Award in 2003. Amy has participated consistently in all of MPF’s programs and events and is well aware of the needs of those affected by PD. Since the beginning of MPF’s “Cabarets,” in 2004, she has been one of the sought-after stars. Amy’s background is varied and includes being in the entertainment industry, a storyteller, teacher

Blake JohnsonBlake Johnson
Blake Johnson is the Chief Operating Officer and Director of Business Development for GTJ Consulting, LLC in St. Clair Shores and is a Founding Member and Board Member of GTJ Foundation, a charitable organization that has assisted local and national non-profit charities and established college scholarships. He graduated from Wayne State University, with a 4 year athletic scholarship and held leadership roles in academics as well as athletics. Blake has been very active in the community.

We wish to thank Ronald Sollish, Esq., and Robert Berlow, Esq. for their exceptional and dedicated services as Chairman and Secretary for the past few years and Carol Sewell, Esq. who has served on the Board for the past two years.

We thank Governor Rick Snyder, the State of Michigan, and all of the Mayors and City Councils who declared April as Parkinson's Awareness Month. The govenor's proclaimation can be viewed here.

Thanks also to Senator Debbie Stabenaw and others on the national level who obtained a declaration for Parkinson's Disease Awareness Month in the Senate.

These proclamations mean so much to all of us. It brings attention to the struggle and successes that we face on a daily basis, giving credence to the need for support for all those people affected by this complicated disease.

Although Pre-registration is closed, Registration will close on May 10. You can still attend the walk/runs on May 14 and 15 with event day registration, which begins at 8:30 a.m. at both site.

 
 
 
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