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September 29th, 2010
04:54 PM ET
Michael J. Fox on Parkinson's and lifeBy Dr. Sanjay Gupta When I went to Michael J. Fox’s neighborhood this morning, I had no idea what time we would start our interview. “He has to time his medications,” I was told. “When his medications kick in, he will be ready.” As far as I could tell, Fox’s medications kicked in right away, and for the next 90 minutes, we talked about everything. Fox spoke about the hard shoes he has to wear first thing in the morning, because his feet and legs are so stiff. He humorously added that he just puts his toothbrush in his mouth, and lets the movement of his head do the rest of the work. As a neurosurgeon, it was fascinating to hear Michael describe his own brain surgery with such great clarity and his fears about doing it again. “Well, it is brain surgery…" he said with flourish. There is a lot we don’t know about Parkinson’s disease. For starters, no one is sure what causes it. One’s genetics likely loads the gun, and something in the environment pulls the trigger. But what? It might surprise you to know four people on the set of Fox’s first television series, "Leo and Me," developed early onset Parkinson’s disease. A statistical anomaly, or a clue? Michael, and his foundation’s scientists aren’t sure. Michael pauses when I ask him about it, he shrugs his shoulders and says, “I am not as concerned about a few people. I am focused on everyone who has the disease.” And, to that end, he is putting the $200 million his foundation has raised to work. You won’t hear as much about stem cells from Michael or the foundation, but he will describe in detail the efforts of a five-year, international biomarker study his foundation is funding. The goal is to find more clues about the disease, by collecting samples from patients. It is true that most therapies simply mask the symptoms, and Fox believes that if they find new targets of the disease, it will greatly accelerate the treatments available. Impact Your World: Learn more about the Michael J. Fox Foundation Today, I asked Fox if he was even sure he had Parkinson’s disease. After all, there is no blood test or imaging study. It is just a clinical diagnosis, and Fox's condition was diagnosed at age 30. He has officially had the disease for nearly two decades. Fox told me he's pretty sure he has it, but even today Parkinson's disease is not an exact science. Michael looked very good today. Good days and bad days, he told me. People think of the natural state of Parkinson's as the symptoms of stiffness, tremor and lack of facial expression. When Michael is medicated, it is different. He is smiling, passionate and has constant, fluid movements, instead of rigidity. “Those are the dyskinesias,” he tells me. “But it buys me time to do the things I want to do,” he added with his characteristic grin. Tomorrow at 8 p.m., you will hear about all the things Michael J. Fox has planned for the future. Editor's Note: "Sanjay Gupta MD Reports: A Conversation with Michael J. Fox" airs Thursday at 8 p.m. ET on CNN.
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love. Recent Comments
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How I wish the Dystonia community would see this- Connie Ray – Your quote" One person can move a grain of sand, a cohesive group can move a mountain."
Wow! I can't believe all the negative remarks, which is why I was hesitant to even comment hear. Michael J Fox is a brave, admirable person and I wish him and other Parkinson sufferers the best of luck! I have Dystonia and only ask that this disorder be given more attention than it has been. It needs more money and research to help so many people who suffer from this disorder! Please help us!
My Dad has Parkinson's he use to fall 3to5 times a day ,,,,Now hes on Marijuana he falls 2 times in 2 weeks time to legalize Marijuana he also eats well too
It is sad to see how the majority of people in the Western culture got fooled by the pharmaceutical companies. They keep saying they are looking for "cures". They aren't. They are just looking for drugs that can be patented and can bring enormous profits. In fact, hidden agenda of big pharma companies is to make the society as sick as possible. All those drugs just treat symptoms and make people more sick. I hope Michael J. Fox does his own reasearch. There are many natural supplements that can greatly help even with this disease.
To control the pain that causes Parkinson's disease, vicodin and lortab, are medicines that have been proven in medical studies to help control chronic pain, but as stated in findrxonline, has side effects that can be dangerous if not taken in an appropriate manner.
LISTEN UP, PEOPLE: "EARLY ONSET" Parkinson's is NOT curable. I DON'T CARE about "how much" MJ Fox fights, THERE IS **NO** FEDERAL FUNDING to really cure this...PLUS, he's a RARE, ODD case. HIS "substantia Nigra" (what gets depleted in the base of the brain in Parkinson's patients) WON'T be replaced–this technology is STILL **ROUGHLY** 20+ years old. Cancer and Heart attacks KILL most Americans. THAT IS WHERE WE SHOULD PUT OUR RESEARCH DOLLARS–and so, WE (as a NATION through the NIH) **DO** put our DOLLARS.
LISTEN UP, PEOPLE: "EARLY ONSET" Parkinson's is NOT curable. I DON'T CARE about "how much" MJ Fox fights, THERE IS **NO** FEDERAL FUNDING to really cure this...PLUS, he's a RARE, ODD case. HIS "substantia Nigra" (what gets depleted in the base of the brain in Parkinson's patients) WON'T be replaced–this technology is STILL **ROUGHLY** 20+ years old. Cancer and Heart attacks KILL most Americans. THAT IS WHERE WE SHOULD PUT OUR RESEARCH DOLLARS–and so, WE (as a NATION through the NIH) **DO** put our DOLLARS.
LISTEN UP, PEOPLE: "EARLY ONSET" Parkinson's is NOT curable. I DON'T CARE about "how much" MJ Fox fights, THERE IS **NO** FEDERAL FUNDING to really cure this...PLUS, he's a RARE, ODD case. HIS "substantia Nigra" (what gets depleted in the base of the brain in Parkinson's patients) WON'T be replaced–this technology is STILL **ROUGHLY** 20+ years old. Cancer and Heart attacks KILL most Americans. THAT IS WHERE WE SHOULD PUT OUR RESEARCH DOLLARS–and so, us (as a NATION through the NIH) **DO** put our DOLLARS.
The Govt. SHALL NOT waste money on this ODD, RARE case of EARLY-onset Parkinsons. NOBODY CARES-enough ELDERLY PEOPLE have this disease to have this PARIAH show up and "make it an important issue"...
What few people realize is that continuous use of drugs like levadopa ("LDOPA"), while certainly helping with the parkinsons problems, lead to "side effects" that basically mimic schizophrenia (a condition which, at least in part, is suspected to be caused by excess dopamine reactions). Thus, you can move, but you eventually start having serious delusions and hallucinations.
The brain implants seem to be a far better long-term solution. You can give people that mobility back by sending small, targeted electrical impulses to the brain, and then you don't have the side-effects of excess dopamine. The downside, of course, is that it involves drilling holes in people's heads and running wires down their skull and neck into their chest where the batteries are located. Not trivial surgery but when the alternative is being unable to move...
I am not saying anything bad about Michael here, but its got to be so much more easy for him as a celebrity millionaire, then for the parents of a child who have to both go to work every day or one stays home to care for the child who has MS or Parkinson's or any of the horrible things that can happen to the human body. Mike has the money to hire massage therapists and what ever his needs are. Just saying he is more lucky then others with the same thing.
Who cares about his politics. He is a decent human being who is using the means available to him to help others. The world is a better place because of people like him.
I think Michael J. Fox is a true inspiration.
I looked in my tv listings ad this show with the Dr. and Mr. Fox is tomorrow morning.
Check yur lsitings if you want to see it!
I have had PD for 9 years or more and what Michael said at the end about 'living in the moment' and not worrying about what may happen in the future has worked for me long before I had PD. Why fret twice about anything? Either a thing will happen or it won't and I have determined I will save my concern for when someting bad actually happens. Why waste time imagining a terrible scenario, especially if it never comes to pass. Life is indeed too short. If you can control an outcome, do it. If something is truly outside your control, then you're wasting time worrying about it.
This is a wonderful interview with a great person who has put a tremendous amount of effort behind raising awareness and increasing research for PD. The number of grants funded through the MJF Foundation for PD research is phenomenal and the quality of the work funded is also commendable. Much of this research will benefit all types of movement disorders and neurodegenerative diseases and other diseases as well. The database of the projects funded is searchable on their site. As a person who has lived with generalized drug induced dystonia (secondary to mitochondrial disease) for 15 years and a graduate student studying neuroscience (neurodegenerative diseases & movement disorders) I believe that MJF has contributed a great deal to increasing the amount of NIH funding put toward research to find better treatments and ultimately cures for not only PD but neurological and neurodegenerative diseases in general. The amount of research being carried out in this field has grown by leaps and bounds in the last decade and I believe that has a great deal to do with significant advocacy by not only MJF but by others with movement disorders like PD, dystonia, tremor and neurodegenerative diseases. I hope that by continued awareness and media coverage like this we can eventually get to where people have a better understanding of these devastating disorders and the need for more funding and research. After finding out that my dystonia stems from mitochondrial dysfunction (a common thread between all neurodegenerative diseases) my hope (as Beka mentioned) is that these links between all these disorders will be given a priority for research funding. Thank you Michael and Dr. Gupta for sharing your thoughts and answers to questions in a great interview.
I guess I did this wrong, but my comment is above and this is my name and Dystonia name. I have reached the shaking stage after two months and I stay in a lot only going where restaurants, etc. know what I have. I wear shirts advertising the disease and trying to bring attention to it. I look drunk when I walk and put my right hand on my right hip and keep my left hand out to the left to restore my balance. It is a hoot. LOL Some of the looks I get are so funny. The worse part about Dystonia and my age is loneliness as my caretaker decides when I can drive our second car. It is dark purple and looks like Barnie the children's TV show. I call it Barnie Ann. Perhaps I will decorate it to advertise Dystonia. LOL Love, MomMaarge
My Uncle died with PD, L-DOPA had just become available and DBS hadn't even been thought of. I suffer from a mild dystonia treatable with drugs. I am hoping for some progress in understanding this disease as a spin off from research into PD. It seems though that even with the large research funds generated by Fox progress is slow.
SANJAY, PLEASE DO A FULL SEGMENT ON DYSTONIA!
Parrot-go away. I am in my 17th year of this damm disease, and I fight it EVERY day. I absolutely refuse to give in to the disease and let it overtake my life. I work 50 to 60 hours per week, play golf, drink, and live my life to the fullest. I worship my grandkids and play with them as often as I see them. I firmly believe that a positive attitude and a set of balls will help fight this disease until the government gets off of their overpaid and underworked asses and does something about it It is a disease that effects everybody in some shape or form. Thank god for MJ Fox who leads the charge. What c an we do to help
I strongly feel Michael has parkinsons disease. His symptoms seen in the interview were due to dyskinesias caused by Levadopa. well some one close in my family too has similar symptoms. Stem cell transplant is still on trial basis is most parts of the world, so the results are varied.. Ive known a patient who underwent stem cell transplant for spinocerebellar ataxia, the results were phenomenal for 6 months, almost complete improvement, but after that there was rapid deterioration to preoperative condition, so Its very much on a trial basis. DBS is still promising. any comments??
My Dad has Parkinson s and he has a Natural solution he use Marijuana and it Helps Him Tremendously,,, He fell 3 to 5 times a day now he Falls 2 times in 2 weeks and its still at that today . Also He Eats very well and it also helps with hes speech getting Louder . I use it for my Arthritis and Diabetes , It Has unknown cures
Its in the Bible for us to use( Exodus 30 )
Its the Tree of LIFE
We warmly welcome my name is Adrian Emanuel Najda. I would like to give my testimony of healing and obiawienia and God's love. The end is near śiwata therefore unite in peace
Thank-you Michael for going on Dr. Gupta's show. I was just diagnosed last month with Parkinsons. I appreciate all you're doing to further the research to help me and many others. I want to adopt your philosophy to live every day to the best of my ability. There's no point in wasting my life feeling sorry for myself. I will do my best to help you raise awareness for this disease and help conquer it for my children and future generations. May you be blessed in your endeavor.
Dr.Sanjay Gupta: If you need to get some facts–about LATE DETECTION of COLON CANCER–please contact Dr.Tarun Mullick at http://www.mullickmd.com
CDC report is very troubling and serious warning–but until YOU report it with LIVE cases– SCREENING rates will remain low and 40,000 unnecessary deaths per year will remain an AMERICAN TRAGEDY. SO PLEASE HELP AVOID THESE DEATHS. THANK YOU.
JAN MUDAY and MICHEAL FOX:
Here's a question that was posed to DALAI LAMA.
"What thing about Humanity surprises you the most?"
His answer was as follows:
"MAN/WOMAN"
Because he sacrifices his/her health in order to make money.Then he/she sacrifices money to recuperate his/her health.
And then he/she is so anxious about the future that he /she doesn't enjoy the PRESENT.
And as a result he/she doesn't live in the present or future.
And she/he lives as if he's never going to die.
And then he/she dies having NEVER REALLY LIVED.
michael j fox is a hero to many people battling parkinsons disease he was a hero before that though he was one of my favorite actors i enjoyed watching him acting i believe God will some day heal this disease your always in my prayers michael love margaret
I've Got a Hell of a Lot of Medications Already,so I'm Just Glad That I Don't Have Parkinson's Because I Wouldn't be Able Those Extra Pills,I'm Pretty Damn Close to Offing Myself Already Because of All of The Med.s Anyway,at Least Then I Wouldn't Have to Take my Medications Anymore
CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION...LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU...BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS....
STILL INTERESTED? READ ON!...(and no I am not selling anything!)
I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.
The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamt, though he had a lot of side effects from Mirapex and Artane.
I was busy teaching Science and although I lived close, found it tough to find the time to help out....though I'd often come over on the weekends.
Years 5-10 became tougher as you know...Sinamet was introduced in year 7 and really helped for a while...but in year 11 Dad got Aspiration Pneumonia...spent a week in the hospital and was severly weakened. With slow rehab and excellent Physical Therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old most Doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no Neurolgist seemed able to help with. Then I came upon this theory in my countless internet searches:
The Pulsatile Theory of Levadopa Administration:
What does this mean? It means the Levadopa (L-Dopa or "Sinamet") you take is in Big Chunks compared to the natural flow of a non Parkinsons person.
IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa)IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE EFFECTS OF SINAMET...INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS AND DRUG FAILURE.
I did this with my Dad and it really helped! Read on...
What does it mean? It means that when you take a tablet or 2 of Sinamet...the sudden rise of LDopa or falling off is stressful, and over time produces Dyskinesias...
So if for example you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you'd take just a a little BEFORE you normally would...and the second just a little AFTER you normally would...about 15 minutes apart may work (AGAIN...ASK YOUR NEUROLOGIST FIRST!)
WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low....then the second tablet can later "Buoy" up the dose level, BUT avoiding a sharp spike.
My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias and bad extended "off" periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart...
HUGE DRAMATIC IMPROVEMENT....70%-80% BETTER IN ALL AREAS
I am just writing this because NO Neurolgist advised me about this. IN FACT, they looked at my Dad...and shrugged their shoulders and said , "Well, 12 years with Parkinsons....and....what can you do?"
I brought this idea to a great Neurolgist at the Veteran Administration in West Los Angeles and he helped me out line the dosing schedule.
Though my father's has it tough, at least this has eased his discomfort some...
REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE TUNES THE SINAMET YOU ARE ALREADY TAKING...IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET...PERHAPS...
Again Ask your Neurolgist...BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS..ASK QUESTIONS...BE RELENTLESS....OPTIMIZE YOU EXERCISE DIET AND SUPPLEMENTS (VITAMINS, ETC.)AND YOU'LL MAKE PROGRESS
Good luck...I hope this helps someone....in the name of my Dad...Ed
Love ya Dad...
Steve