My Father, My Brother, and Me

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Video Stories - Watch short stories Dave Iverson and Michael Schwarz filmed over the past two years while making My Father, My Brother, and Me.

When Parkinson's Runs in the Family

By David Iverson on January 27, 2009 5:54 AM | Comments (13)

If Parkinson's "runs" in your family, should you take a test to learn what the future may hold?

That's a dilemma that will increasingly confront more families in the future. Until recently, Parkinson's was not thought to have a genetic basis, but now scientists think family ties matter for a small, but not insignificant, percentage of people with the condition.

So if you have several family members with PD, should you get yourself tested? Ideally, the point of genetic testing is to identify a risk that you can do something about. For Parkinson's this would mean someone with a family history of the disease could take a test long before symptoms begin and then take a drug that would fix the genetic mutation, stopping the disease before it even starts. But we're not there yet. So in the meantime, given that testing is available but a cure isn't, what should families do?

This is where it gets very personal. Some people like the idea of knowing what may lie ahead. Others feel there's no point. In my own family, the "next generation" is taking a wait and see approach. At the moment, they feel they know what they need to know (including the value of exercise!) and that a genetic map of the future isn't that useful. But I also know of others, including Google founder Sergey Brin, who've made a different choice. It's a very personal question for which there's clearly no right or wrong approach.

What do you think? If there's a history of Parkinson's in your family, I'd be really curious to hear your views, so please add your comments using the button at the top of this post!

 

13 Comments

Isabel Wendy Nye said on January 28, 2009 11:20 AM:

Get tested! In the years before my PD was diagnosed, I had to keep narrowing my priorities to match my failing stamina. As a working mom in the sandwich generation, I had many high priorities and drew motivation from feeling successful at them. The exhaustion that was a major early feature of my PD disrupted that virtuous cycle and threatened a vicious cycle of being too tired to care, too overwhelmed to find my way. My PD diagnosis let me understand my limitations. I now know myself better, so I can better plan and evaluate my priorities. Also, fortunately, my PD medications help enormously with my physical problems (some of which I hadn't even noticed before diagnosis), so I can actually do more of what I know I want to do and feel good about what I do.
Paula said on January 28, 2009 4:41 PM:

I don't know the answer to your question, but thank you for asking it. It deserves discussion. I am at an advanced stage, where it gets trickier to stay positive. But there are things one can do. So I think I lean on the side of getting tested. There might be decisions made differently - like choosing a career - to be safe and prepared. Not to mention prevention.
Bruce said on January 29, 2009 11:52 AM:

I do believe that being diagnosed early on has the benifit of getting started early with the few positive options available. Since Parkinsons pesents itself mainly in a physical condition getting into a focused exercise routine will greatly add to your quality of life.
SUSAN said on January 29, 2009 12:09 PM:

AS FAR AS I KNOW, NO ONE IN MY FAMILY HAD PARKINSONS. HOWEVER, MY MOTHER'S FATHER DIED BEFORE SHE WAS BORN AND I NEVER KNEW OR MET ANY OF HIS RELATIVES. FROM WHERE I SIT NOW, I DON'T THINK I WOULD HAVE WANTED TO KNOW WHEN I WAS YOUNGER. LIFE IS BASICALLY A CRAP SHOOT...NO ONE GET'S OUT ALIVE!! ON THE POSITIVE SIDE, I WAS DIAGNOSED AT 57. IT TOOK 18 MONTHS TO GET A DIAGNOSIS. THE GOOD PART IS HAVING THIS DISEASE HAS OPENED A WORLD THAT ENABLES ME TO GET INVOLVED WITH ORGANIZATIONS, MEET SOME WONDERFUL PEOPLE, SEE ANOTHER SIDE OF MYSELF I DIDN'T KNOW EXISTED. THOSE DAYS WHEN THE MEDS ARE WORKING JUST RIGHT I CAN HONESTLY SAY THAT I AM HAVING THE TIME OF MY LIFE. I HAVE A PURPOSE.
Connie said on January 31, 2009 1:51 AM:

First, thank you for the program. Second, I took a children's literature class from your father at Stanford. I remember him well. He is one of the reasons I entered the education field. Third, I could not believe my ears when I heard the program: My grandfather, who had Parkinson's, was not only Norwegian, but from Larvik. His son, my father, has Parkinsons. I am turning 60 and would like to be tested if such testing would further the understanding of the disease and possibly help my father, as well as others, since there is likely a genetic component in my family. If there is a researcher to contact I would appreciate the contact information.
Jean said on February 3, 2009 3:58 PM:

Pardon my ingorance....I'm the caregiver for both PD parents and fightened about getting PD & Alz. What is the name of the test you're referring to?
Barbara Lizerbram said on February 3, 2009 7:05 PM:

I will begin exercising with a new understanding of the importance to my wellbeing and quality of life-Although many people in my family have been diagnosed with Parkinson's at this juncture I am not ready to know with certainty. It has always been my contention that the propensity to get this condition has an underlying genetic basis and I live my life accordingly-If it could help find a cure then I would take the test.
Ted Groseclose said on February 3, 2009 7:22 PM:

My mother had Parkinsons. I watched as she painfully diminished over a period of 15 years. It was hell for her family and for my father in particular. He died shortly after her because, I belive, of the stress of being her caregiver. I have been diagnosed with Parkinsons disease. I am going to Germany for a stem cell procedure which uses my own stem cells. Why this procedure is not available in the US baffles me. The people who have impeded the research and application of stem cells will surely rot in hell.
Vicky said on February 3, 2009 7:39 PM:

I was not aware of the test until tonight.I have often wondered if I would test if I could. My father has PD. He believes he is the 3rd generation to have it. As I watch my father's progression, I've decided to take the possibility seriously and try to prevent or delay it. At one point I considered learning blacksmithing but rejected it when some literature suggested welders have higher incidence of PD. How else would the test results impact my life?
Grant Fairbanks said on February 3, 2009 10:21 PM:

At age 68, 21 yrs post Dx, I'm still doing well (as long as I'm living under the "full-court press" of all the good drugs available). My family presents a spectrum of neurological diseases, and I wonder how to contact researchers who may be interested in studying the genetics. I have PD, my sister MS, our younger brother (a high exerciser) fine. My mother died of ALS and both maternal and paternal grandfathers had PD. The ethnicity is scrambled: Norway, Moravia, N. Germany, Ireland and New Englaqnd Yankee of Welsh and English origins. A fine program, this Frontline. I hope you can refresh us from time to time--particularly regarding the effects of exercise.
ray said on February 4, 2009 7:20 AM:

Thank you for an excellent program. I am especially interested in the genetic angle of this disease. All four of my grandparents were born in Norway and my father's mother and his brother had PD. Eight years ago my younger sister was diagnosed with PD so it certainly is prevalent in my family. Do I want genetic testing to gauge my risk for the disease? I don't think so, at least not until our ability to treat PD improves. In the meantime I think I'll just wait and see, like your family. And oh yeah, this is the year I finally will follow through on my annual New Year's resolution and start exercising more.
ainee said on February 4, 2009 3:21 PM:

I wonder if Dave Iverson could email me please. I suffered horrific neurological symptoms which crossed over many illnesses and conditions. I experimented with simple treatments which suppressed my symptoms for a few hours, eventually reversing most of them. I first took 250mgs Vitamin B1 tablets - 3 times a day as directed on the bottle. I experimented by raising the dose and the rate - it wasn't an "over night fix it all", it took many months, but now am well. I wonder if anyone is interested in my information. ainee
Stephanie said on February 5, 2009 5:09 PM:

I recently saw the program on Parkinson's. My husband and I watched it since we suspect a relative has it, but has not yet been diagnosed. The program was great, but when it discussed non-pharmaceutical treatment options, the only thing mentioned was exercise. America is a very pharmaceutically driven medical system which frequently overlooks non-pharmaceutical approaches. Has anyone looked at supplementing the diets of Parkinson's patients with therapeutic doses of time released balanced b complex vitamins? They help with proper nerve functioning. They also help with carpal tunnel syndrome, another nerve related disorder.

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posted january 29, 2009

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