Michael J. Fox has young onset PD. I remember when I first learned he had it, thinking how sad that was . . . to know that someone so young, talented, and smart had such a nasty disease. Little did I know that I would someday have PD myself. Now I am very grateful that he has thrown his considerable resources into finding a cure. I appreciate that he is such an honest and energetic advocate, and he's done SO much toward raising awareness as well as money toward improving the lives of those who have PD. I do think, despite his very candid admission that he's not a typical patient, this fact is sometime missed. It's important for viewers to understand that each person who has PD is unique. As Vicky mentioned in her comment below, some patients, like her husband--after 10 years of decline--can't walk, feed themselves, etc. Most people are diagnosed in their 60s, and they find themselves getting "old" really quickly.The medications are amazing and work -- at first. Gradually, as the symptoms get worse, the medications don't work as well and become unpredictable. The periods of time (each day) during which the meds are doing their job are called "on" time. Those periods when the medications are not working are called "off " time. I think, for me, one of the problems is, on days when I have several hours of "off" time, I get a healthy (or unhealthy) taste of how I could feel and function ALL the time. Depression and anxiety are common in the PD population and might even be symptoms of the disease. When this is the case, being optimistic gets to be one more difficult chore for the PD patient. Michael is honest about his symptoms, but I would be willing to bet that most viewers think the random movements that he makes are part of PD, and possibly the only real problem he has. When, in fact, the movements are a result of too much medication. Getting through a doorway or getting into bed may be frustrating actions that are much harder for him. He also mentioned falling as one problem he deals with -- or tries to handle. Falling happens to me regardless of how well the meds are working. Sometimes even the doctors and researchers don't understand. We PD people don't have good and bad days. We have days that include "on" and "off" time. During "on" time, if we are lucky, we look and act normal. During "off " time, we may shake all over or one part of us has a tremor. We may need a walker, act and feel depressed, be constipated and/or have to urinate every 20 minutes, have trouble swallowing, have difficulty typing, drawing, smiling, talking, concentrating . . .The list goes on. I've been lucky. Most of my days, I'm "on." I was diagnosed 10 years ago, and have been able to do the things I want to do. But, like Michael, I have a caring family and a wonderful spouse. Without them, I would not be able to live on my own. So, in closing this rambling comment, I'd like to say thanks to Michael and to your family, also, for supporting you and your unfailing efforts to help others.
I was diagnosed with Parkinson's 14 years ago at age 40. We are told by physicians that it progressed slowly because I continued to play competitive tennis. The past few years we saw the symptoms getting aggressive. Last June I had DBS and I am extremely grateful especially when I see someone fighting like MJF. Thankful for him and his foundation as well as Verily.
Its sad to see , God have mercy on us. So many diseases and sickness and we so called healthy people complain about nonsense. Stay up mr.fox you are a true inspiration.
I have been a participant in the PPMI study for two years. Though I have several biomarkers including LRRK2, at age 65 I am not (yet?) showing symptoms of the disease. Despite having difficult reactions to some tests (especially the lumbar punctures), I would not even consider moderating my participation. Why? Everyone I have met including geneticists, neurologists, technicians and those I have not met but greatly admire ( Michael J Fox naturally but also everyone associated with the foundation) have been remarkably kind, attentive and focused -along with a much appreciated sense of humor. The foundation's approach with open access and with egos at least modified promises the best possibility of answers to the cause and treatment and even cure of this insidious disease. Thank you for the opportunity to be part of this!
Hi, Anne. Thank you for your participation in PPMI and for your kind words. We’d like to speak with you about your study experience. If you’re willing, please email us at info@michaeljfox.org. Thanks again!
The FDA recetly approved INGREZZA as a treatment for tardive dyskinesia. The 20 years involved in establishing the value of the drug was for use by patients who develop tardive dyskinesia as a consequence of psychotropic medications. Neurocine Biosciences, Inc.
It’s horrible. Tyler dyscrasia.. sorry I can’t spell because I can’t use my fingers… And I can hardly talk so there’s that… It’s medication harm by doctors and then a remedy that also causes things and makes more money for big Pharma… Parkinson’s is one thing… But Their harm is another
richard williams I am not sure the Foundation takes a stance, but I found these on their page. www.michaeljfox.org/mobile/topic.php?deep-brain-stimulation www.michaeljfox.org/mobile/news-detail.php?improving-deep-brain-stimulation-to-treat-freezing-of-gait
Here is another resource you may find useful: Our Foundation's Ask the MD video on DBS. www.michaeljfox.org/foundation/news-detail.php?ask-the-md-deep-brain-stimulation-dbs-and-parkinson-disease
Perhaps it's just because I'm somewhat in denial concerning Parkinson's disease but people bother me when they tell stories concerning relatives or friends who died of Parkinson's. The latest was somebody who lost the capability to swallow and they refused feeding tube. I would rather they discussed possible helpful medication
Don't listen to what others have gone thru, robert harris. Each case is different and you may never experience what someone else has gone thru. My dad felt just as you did. People would tell him terrible things and scare him. He didn't appreciate it but never told them. He live with Parkinson's for 23 years and did very well. All of that worry for nothing. I truly wish you well on this journey.
My husband was diagnosed with parkinson's disease in 2007.He is now 68 yrs. old and in a nursing home. He can't walk, feed himself, and his head has dropped down(he can't hold it up.
Give this man a buttload of a variety of vegetables that he can cook everyday, a near infrared sauna to sweat in daily, a coffee enema kit, and set him up with ARL (analytical research lab) to do hair tests with. I want to see what his oxidation rate is and mineral and metal levels on his initial test. He's got metals he'll need to detox from to see any bigger reduction in symptoms.
Michael J. Fox has young onset PD. I remember when I first learned he had it, thinking how sad that was . . . to know that someone so young, talented, and smart had such a nasty disease. Little did I know that I would someday have PD myself. Now I am very grateful that he has thrown his considerable resources into finding a cure. I appreciate that he is such an honest and energetic advocate, and he's done SO much toward raising awareness as well as money toward improving the lives of those who have PD.
I do think, despite his very candid admission that he's not a typical patient, this fact is sometime missed. It's important for viewers to understand that each person who has PD is unique. As Vicky mentioned in her comment below, some patients, like her husband--after 10 years of decline--can't walk, feed themselves, etc. Most people are diagnosed in their 60s, and they find themselves getting "old" really quickly.The medications are amazing and work -- at first. Gradually, as the symptoms get worse, the medications don't work as well and become unpredictable. The periods of time (each day) during which the meds are doing their job are called "on" time. Those periods when the medications are not working are called "off " time. I think, for me, one of the problems is, on days when I have several hours of "off" time, I get a healthy (or unhealthy) taste of how I could feel and function ALL the time. Depression and anxiety are common in the PD population and might even be symptoms of the disease. When this is the case, being optimistic gets to be one more difficult chore for the PD patient. Michael is honest about his symptoms, but I would be willing to bet that most viewers think the random movements that he makes are part of PD, and possibly the only real problem he has. When, in fact, the movements are a result of too much medication. Getting through a doorway or getting into bed may be frustrating actions that are much harder for him. He also mentioned falling as one problem he deals with -- or tries to handle. Falling happens to me regardless of how well the meds are working.
Sometimes even the doctors and researchers don't understand. We PD people don't have good and bad days. We have days that include "on" and "off" time. During "on" time, if we are lucky, we look and act normal. During "off " time, we may shake all over or one part of us has a tremor. We may need a walker, act and feel depressed, be constipated and/or have to urinate every 20 minutes, have trouble swallowing, have difficulty typing, drawing, smiling, talking, concentrating . . .The list goes on. I've been lucky. Most of my days, I'm "on." I was diagnosed 10 years ago, and have been able to do the things I want to do. But, like Michael, I have a caring family and a wonderful spouse. Without them, I would not be able to live on my own. So, in closing this rambling comment, I'd like to say thanks to Michael and to your family, also, for supporting you and your unfailing efforts to help others.
"Acceptance isn't resignation. It's acknowledging the truth and being empowered by it."
Beautiful
I was diagnosed with Parkinson's 14 years ago at age 40. We are told by physicians that it progressed slowly because I continued to play competitive tennis. The past few years we saw the symptoms getting aggressive. Last June I had DBS and I am extremely grateful especially when I see someone fighting like MJF. Thankful for him and his foundation as well as Verily.
Stay strong!
Love Michael…
Love you michael j fox. You keep healing and get well.
im a simple man, i see Michael J. Fox, i upvote
Its sad to see , God have mercy on us. So many diseases and sickness and we so called healthy people complain about nonsense. Stay up mr.fox you are a true inspiration.
I have been a participant in the PPMI study for two years. Though I have several biomarkers including LRRK2, at age 65 I am not (yet?) showing symptoms of the disease. Despite having difficult reactions to some tests (especially the lumbar punctures), I would not even consider moderating my participation. Why? Everyone I have met including geneticists, neurologists, technicians and those I have not met but greatly admire ( Michael J Fox naturally but also everyone associated with the foundation) have been remarkably kind, attentive and focused -along with a much appreciated sense of humor. The foundation's approach with open access and with egos at least modified promises the best possibility of answers to the cause and treatment and even cure of this insidious disease. Thank you for the opportunity to be part of this!
Anne, thank you for being part of PPMI!
Hi, Anne. Thank you for your participation in PPMI and for your kind words. We’d like to speak with you about your study experience. If you’re willing, please email us at info@michaeljfox.org. Thanks again!
Thank you for sharing. This is important.
The FDA recetly approved INGREZZA as a treatment for tardive dyskinesia. The 20 years involved in establishing the value of the drug was for use by patients who develop tardive dyskinesia as a consequence of psychotropic medications. Neurocine Biosciences, Inc.
It’s horrible. Tyler dyscrasia.. sorry I can’t spell because I can’t use my fingers… And I can hardly talk so there’s that… It’s medication harm by doctors and then a remedy that also causes things and makes more money for big Pharma… Parkinson’s is one thing… But Their harm is another
Yes
Could you tell me what the Foundation''s opinion is on DBS ?......thanks !
richard williams I am not sure the Foundation takes a stance, but I found these on their page.
www.michaeljfox.org/mobile/topic.php?deep-brain-stimulation
www.michaeljfox.org/mobile/news-detail.php?improving-deep-brain-stimulation-to-treat-freezing-of-gait
Here is another resource you may find useful: Our Foundation's Ask the MD video on DBS. www.michaeljfox.org/foundation/news-detail.php?ask-the-md-deep-brain-stimulation-dbs-and-parkinson-disease
Perhaps it's just because I'm somewhat in denial concerning Parkinson's disease but people bother me when they tell stories concerning relatives or friends who died of Parkinson's. The latest was somebody who lost the capability to swallow and they refused feeding tube. I would rather they discussed possible helpful medication
Don't listen to what others have gone thru, robert harris. Each case is different and you may never experience what someone else has gone thru. My dad felt just as you did. People would tell him terrible things and scare him. He didn't appreciate it but never told them. He live with Parkinson's for 23 years and did very well. All of that worry for nothing. I truly wish you well on this journey.
Why do not send to all patients you know about a well developed questionaire, so we can contribute to your database?
If you sign up for Fox Insight, you can do exactly that. www.foxinsight.org. Hope you will join.
My husband was diagnosed with parkinson's disease in 2007.He is now 68 yrs. old and in a nursing home. He can't walk, feed himself, and his head has dropped down(he can't hold it up.
:'(
Give this man a buttload of a variety of vegetables that he can cook everyday, a near infrared sauna to sweat in daily, a coffee enema kit, and set him up with ARL (analytical research lab) to do hair tests with. I want to see what his oxidation rate is and mineral and metal levels on his initial test. He's got metals he'll need to detox from to see any bigger reduction in symptoms.
I love Michael J. Fox, but the other two people on that stage make my BS sensors go off.