My Father, My Brother, and Me


Have you or family and friends been touched by Parkinson's disease? Share your story.

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Dear FRONTLINE,

I applaud your sensitive provocative approach on the subject of Parkinson. I would like to offer hope to all suffering with a living example of my father. For the last 22 years he has been putting up a terrific fight against this monstrous progressive disease. The key to my father's fight was running. What started off as a mile walk at age 50, the year he was diagnosed, turned into running marathons in his mid sixties. Now at the age of 72 he no longer runs but he walks, exercises and just bowled a 208 few days ago. He is a wonderful stubborn Irishmen who will not give up and continues to fight. He also is my hero.

Thank you for your dedication and enlightenment. My best wishes to you and to all who are suffering. Keep on fighting!

Michael Murphy
Grand Blanc, Michigan

Dear FRONTLINE,

Thank you for an informative program. I'm female and was diagnosed a few months ago shortly after my 60th birthday. I'm a widow and my greatest concern is dealing with the symptoms and challenges of Parkinson's while living alone. I'm encouraged by the research on exercise and in spite of severe muscle pain on my right side - I'm recommiting myself to the gym.

Iowa City, IA

Dear FRONTLINE,

I am 61 years old and was diagnosed with PD seven years ago. While I found most of the program to be informative and even inspirational, I noticed there was no discussion about brain trauma being a possible cause of PD.

There are too many instances of athletes, particularly boxers (Mohammed Ali immediately comes to mind), who have been stricken with the disease after their long careers and many concussions suffered during those athletic careers. Brain trauma has been posited by my own neurologist as a possible cause in my own instance. While I was not an athlete, I did suffer a severe concussion as a teenager in a car accident. Whether that is the initial cause of my present condition is, of course, open for debate, but I would like to hear a bit more discussion about that in the ongoing search for the causes of PD.

I can also relate to the idea that environmental factors may play a decisive role in the onset of PD. Again, in my case that is a strong possibility. I worked for many years as a contractor building wood decks using pressure treated lumber that was infused with arsenic based preservatives. The notion that increased exposure to those preservatives may have precipitated my case of PD is hard to ignore. Yet there is still no definitive evidence that toxins or trauma are the cause of this debilitating condition.

Perhaps when we find out what the root cause is for Parkisnons, we will be able to stop the disease from ever forming. And while ongoing research looks for a cure, maybe more effort should be exerted in finding the cause.

Robert Cizauskas
Greenfield, WI

Dear FRONTLINE,

. I would like to suggest that there be another show which focuses on profiles on individuals who are coping successfully with Parkinsons physically as well as mentally and spiritually. I was about 50 years old when diagnosed with the disease and ten years later I still hold a very responsible executive job, continue to sing in a choir and am in demand as a public speaker. However for the first six years I was in marked decline. For the last 3.5 years I've been holding steady if not improving as I've worked with Dr. Irv Dardik using interval training techniques. I take medication but the real difference has been the excercise program. This is not a cure but it is a way of coping which gives hope to me...and that is key to Parkinsons patient continuing to live which we believe are meaningful. I'm glad to answer further questions. Btw, 60 Minutes is running a segment on Dr. Dardik's work sometime in the next few months.

stan smith
taylors, sc

Dear FRONTLINE,

My mother and brother died from Parkinsons and another brother has been diagnosed with it. It's a horrible disease but my belief in God causes me to be against stem cell or embryo transplants and I would never allow that kind of treatment if I'm diagnosed with it. Those embryos could be adopted and allowed to live instead of trying to save lives of adults who generally are older.

peggy green
new york city , ny

Dear FRONTLINE,

We can truly relate to Mr Iverson and his family. This story reflects our own lives. My husband was diagnosed with Parkinsons last year as was his brother; my father-in-law died of this disease also.

It is ironic that at the present time, my sister is in the last stages of Parkinsons so one can appreciate how our family has come to hate this disease. Many, many thanks for a fine program that keeps us informed of the great ongoing research and the wonderful people involved.

Mary Ellen Kohler
Aurora, OH

Dear FRONTLINE,

As a medical professional working in the ICU setting, I thought this was an excellent feature on PD. Now - what about the other two big movement disorders, which need to be seen and heard- DYSTONIA and TREMOR ??? Over 40 million Americans suffer from a movement disorder. I am one of them with Deep Brain Stimulation. I still work FT in the ICU in New York. But DBS requires major emotional, social, psychological and physical adjustments like those noted in the documentary. It's not for everyone and only acts as a bandaid for the symptoms not attacking the CAUSE.

Yet, PD co-exists with the symptoms of dystonia and tremor, which makes me question about the connection between all 3 disorders from a scientific point of view. What's the link ? Torsion A Proteins or Exercise ?? I must say GREAT Film Editing and Cinematography along with a well written script.....Kudos to Frontline !

FOTO DBS ESSAY - http://www.parasphotography.com/beka.html

beka serdans, RN, MS, NP
New York, New York

Dear FRONTLINE,

I viewed the FRONTLINE program on the subject of Parkinsons and was absolutely awe struck on that portion of the program that dealt with the benefits of exercise. My personal experience is a testimony to that point. I am a 61 year old male who was diagnosed with Parkinsons six years ago. I am on medication but my perception is that my regimen of high intensity exercise has been much more beneficial overall than the drug therapy. I exercise 1.5 hrs / day 6 days a week. This includes both aerobic and anaerobic threshold activity (eg 500 push ups, 400 pull ups, 30 mins. to 1 hour of cycling. etc.)

These numbers may seem out of bounds but given the decades of training during my youth when I was habitually athletic, often competing for Guinness world records in these events, they are minimal in retrospect. I was captivated by the remarks of Dr. Zigmond and Dr. Schulman on the subject of Parkinsons and exercise. Perhaps my experience / history could prove of value to them in their research endeavors or to other individuals that may benefit from my observations.

Bryan Perry
West Seneca, New York

Dear FRONTLINE,

I watched my dad, an artist, suffer with late-onset Parkinson's from the mid-1990's to the mid-2000's. He was an artist by profession and it was, therefore, especially painful to watch him lose his fine motor skills/his ability to paint and draw.

Now, in 2009, I am faced with helping my middle-aged husband come to grips with his new Parkinson's diagnosis. In some ways, the path ahead is less frightening to me than it might have been, had my dad not also had the disease...in other ways my knowledge and experience make that path more frightening.

Thank you for your excellent and uplifting Frontline.

Wilmington, DE

Dear FRONTLINE,

I am a second-generation Parkinson's Patient. My father had it before I did. We were involved with lawn care and many toxic chemicals. As a Parkinson's activist, I make full and frequent use of all research sources available. The bulletins posted at pdf.org during the latter half of 2008 show clear evidence of the link between such chemicals and higher incidence of PD in the San Joaquin valley in California.

WHY THERE AND NOT TO THE SAME DEGREE ELSEWHERE?

California law requires records be kept of the amount, type and frequency of application of such chemicals, which have been used to build the irrevocable case against the use of such chemicals.

Shades of Upton Sinclair! While this is not the slaughterhouses of Chicago, the growers and chemical companies have, as have so many other industries for so long, been able to carry on as if to say as did Chalerton Heston, "pry this nozzle out of my dead cold outstretched hand." Gladly, so long as it was the result of your own contact with your own chemicals.

A much better approach is to implement a national database that shows where PD patients live and to require federal legislation similar to that of California.

In vino veritas

Gary Hilburger
Rochester, New York

Dear FRONTLINE,

I just got done watching Frontlines - MY BROHTER, MY FATHER, AND ME...as usual I learned a lot from watching Frontline.

I was moved at the bravery and integrity shown by the various people presented in this excellent documentary.

The only part of this documentary that I was confused about was the use of monkeys in this research.

As noted in the show...would exercise help in the battle against Parkinson's disease. Monkeys are injected to simulate the disease, and then are exercised, and then a brain scan is done to see the difference in the control groups and exercised groups brains.

It seems that using an animal that is not human, and given a drug to mimic the real disease is not a cutting edge approach.

I'm always concerned when animals are used in experiments - where it may make more sense not to use them. Why do monkeys who don't get parkinson's disease have to be used at all...when people with parkinson's disease could in this case exercise, and then have a brain scan done?

I know that these monkeys lives must feel like hell on earth living a lonely existence living in a cage.

My hopes are that there is a cure for this disease - the sooner the better, and that the absolute smallest number of animals are used in research as possible.

Thankyou for your time.

andrew ramsey
rochester, new york

Dear FRONTLINE,

Throughout your program and in my own practice I am awed by the courage of Parkinsons sufferers. They are willing and constantly advocating for improved treatments for their disease. This courage and willingness also makes them prey to quacks and expensive treatments of little therapeutic value.

Sticking to reputable practitioners, websites, foundations and support groups remain vital for the complete care of this disease

Tony Knox
York, ME

Dear FRONTLINE,

I have a mother who has been diagnosed with Parkinsons since 1994. One thing that surprises me is that her condition has not been progressive.

Now at its latest stage, her movements are very slow, her voice is down but physically and emotionally strong. Sometimes we try to walk but her movements are getting stiff and painful.

Since I have been following up her situation closely, I believed the desease had something to do with extreme fatigue, lack of sleep and being a workholic... One of the things we introduced to help cope up with the desease was "Living foods lifestyle" traveled to Puerto Rico to an institute where they do a wide variety of relaxation, food technology "organic blended foods" and I saw my mother rest... It was a real vacation....It felt so good. Therefore, I still believe a change of a lifestyle, strong mentality is needed while the research is being conducted. I am still hopeful to see her enjoy life again but I still see parkinsons desease as part of the family...

Paulos Gebre Michael
SILVER SPRING, MD

Dear FRONTLINE,

My father was diagnosed with Parkinson's 4 years ago. He is now 85 years old. We have been to a variety of neurologists to try and get him some relief from his symptoms. One of his most debilitating is his blurred vision. No one has been able to help this condition, including several eye specialists. This is not a "dry eye" condition and yet his Parkinson's neurologists (he has had a few) say the blurred vision is not related to Parkinson's. Opthomoligists have not provided any relief either and the only medication my father has had some minor relief with is sinemet for his tremors. Have you ever heard of blurred vision connected with Parkinson's and if so do you know of a doctor or patient that has any success in it being treated. As my father slowly deteriorates and becomes less and less mobile his inablity to read or see anything clearly is devastating. Any insight or direction you can offer would be a godsend.

Kathleen Brady
New York, NY

Dear FRONTLINE,

I've recently had a DBS (deep brain surgery) procedure.It has changed my life. My relatives and friends tell me that I seem to have shed twenty years and that I move, speak and react better since the surgery. While It was not a pleasant experience the outcome has exceeded my expectations.

Don Rosenfelt
Secaucus, NJ

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posted january 29, 2009

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