Suggestions on early onset Parkinson's
April 11, 2006 7:46 AM Subscribe
My Dad, who's 64, has just been diagnosed with Parkinson's. He has had shaking hands for about a year. He's a scientist and a very bright guy. I'm worried about him, and am about to start research on what can be done to eliminate the symptoms and slow things down. Could anyone provide me with good sources to start off with?
Also, I'm a bit stunned at the moment, but I'd appreciate any personal experiences you might have had with Parkinson's. Are there any non-drug but diet, excercise and life-style things he could adopt to help?
I know it's not a cureable disease, but that drugs are getting much better at eliminating symptoms and slowing things down. What are the most recent advances in the area?
Thanks.
Also, I'm a bit stunned at the moment, but I'd appreciate any personal experiences you might have had with Parkinson's. Are there any non-drug but diet, excercise and life-style things he could adopt to help?
I know it's not a cureable disease, but that drugs are getting much better at eliminating symptoms and slowing things down. What are the most recent advances in the area?
Thanks.
There was a recent article on the BBC website about a new patch that "may offer relief to patients in the early stages of Parkinson's disease."
posted by callmejay at 9:02 AM on April 11, 2006
posted by callmejay at 9:02 AM on April 11, 2006
My brother-in-law, who is only 38, was diagnosed a few years ago. (He was frustrated because the support/info group he went to would give him stuff like pamphlets titled "What's Wrong with Grandpa?")
He is doing great, moving a little slower and stiffer, but dealing with it really well. My understanding is that the meds for Parkinson's sometimes cause worse effects that the disease itself. After several attempts at different meds that made him feel awful or caused him to shake (if he wanted to play guitar he had to take his pills at a specific moment to time it just right), his doctor put him on something different which balanced things out a lot better. I can't recall the name of the drug(s) he's on, but I can find out.
Also, althought he was never a big drug smoker, he's recently taken to smoking the occasional joint which he finds really loosens him up and stimulates his apetite.
posted by chococat at 9:33 AM on April 11, 2006
He is doing great, moving a little slower and stiffer, but dealing with it really well. My understanding is that the meds for Parkinson's sometimes cause worse effects that the disease itself. After several attempts at different meds that made him feel awful or caused him to shake (if he wanted to play guitar he had to take his pills at a specific moment to time it just right), his doctor put him on something different which balanced things out a lot better. I can't recall the name of the drug(s) he's on, but I can find out.
Also, althought he was never a big drug smoker, he's recently taken to smoking the occasional joint which he finds really loosens him up and stimulates his apetite.
posted by chococat at 9:33 AM on April 11, 2006
My mother, who has early-onset Parkinson's, has been dealing with the disease for seven years now. PD effects people in different ways (some folks experience bradykinesia, while others slow movement or stiffness, etc.), so it's hard to say what exactly is needed, but a lot of the same techniques used in physical therapy for those recovering from accidents seem to help. 300 Tips for Making Life with Parkinson's Disease Easier by Shelley Peterman Schwarz is good reading on the subject.
The first couple of years really only affected fine motor skillsin my mom; it's only now that she's at the point where she's at the stage most people think of when they think of PD (hard time walking, can't write, prone to falling, some mental decline), but that shouldn't be a forefront concern at this point.
It sounds like you would like to put less emphasis on the prescriptions, but I have to say that they're absolutely vital. A day without meds is far, far worse than a day with. She started out on an a slow-increasing regiment of Permax (pergolide), then gradually added in Comtan and Sinemet (carbidopa/levadopa). A new drug came out a year or two that actually combines Comtan and Sinemet, and I believe this is now the most frequently prescribed drug to new patients. I've been told by doctors that the prescription regiment will last for about ten years; after that, the drugs start actually working against the body.
Ten years is also around the time that surgical treatment becomes viable option (less if the symptoms are more severe), which may be something to look into as well. Although it can only be done once, it wards off problems for another three to five years.
I'd highly suggest that your father join a support group; the National Parkinson Foundation has a nice list of local outlets and is a good resource to have on hand. Some recommended reading would include The First Year of Parkinson's Disease: An Essential Guide for the Newly Diagnosed by Jackie Hunt Christensen, Diagnosis and Management of Parkinson's Disease by Cheryl H. Waters and anything by Abraham Lieberman.
This can be a difficult, confusing time. There will be good days (both in terms of emotion and movement) and bad, and there's no real explanation as to why things change so much from one day to the next. Good luck to you both.
posted by Hot Like Your 12V Wire at 9:42 AM on April 11, 2006
The first couple of years really only affected fine motor skillsin my mom; it's only now that she's at the point where she's at the stage most people think of when they think of PD (hard time walking, can't write, prone to falling, some mental decline), but that shouldn't be a forefront concern at this point.
It sounds like you would like to put less emphasis on the prescriptions, but I have to say that they're absolutely vital. A day without meds is far, far worse than a day with. She started out on an a slow-increasing regiment of Permax (pergolide), then gradually added in Comtan and Sinemet (carbidopa/levadopa). A new drug came out a year or two that actually combines Comtan and Sinemet, and I believe this is now the most frequently prescribed drug to new patients. I've been told by doctors that the prescription regiment will last for about ten years; after that, the drugs start actually working against the body.
Ten years is also around the time that surgical treatment becomes viable option (less if the symptoms are more severe), which may be something to look into as well. Although it can only be done once, it wards off problems for another three to five years.
I'd highly suggest that your father join a support group; the National Parkinson Foundation has a nice list of local outlets and is a good resource to have on hand. Some recommended reading would include The First Year of Parkinson's Disease: An Essential Guide for the Newly Diagnosed by Jackie Hunt Christensen, Diagnosis and Management of Parkinson's Disease by Cheryl H. Waters and anything by Abraham Lieberman.
This can be a difficult, confusing time. There will be good days (both in terms of emotion and movement) and bad, and there's no real explanation as to why things change so much from one day to the next. Good luck to you both.
posted by Hot Like Your 12V Wire at 9:42 AM on April 11, 2006
I am 34 and have a neurological disorder that shares some traits with PD, but is undiagnosed. My advice is for your dad to stay active. I do a regimine of physical therapy exercises every day. It really helps.
Attitude is crucial. Your dad will probably deal with depression now and again. Be aware of his feelings and be there to help. Your concern shown here is a good start.
Best of luck.
posted by spakto at 10:42 AM on April 11, 2006
Attitude is crucial. Your dad will probably deal with depression now and again. Be aware of his feelings and be there to help. Your concern shown here is a good start.
Best of luck.
posted by spakto at 10:42 AM on April 11, 2006
You have my deepest sympathies. My father succumbed to Parkinsons a few years ago after about 10 years with. It is a terrible thing. My only advice (besides what others have said) is to spend as much time with him as you can now. Cherish that time.
posted by jockc at 1:20 PM on April 11, 2006
posted by jockc at 1:20 PM on April 11, 2006
regrets on the dignosis, but it is certainly not a death sentence. he may have trouble believing that right now, but to aggregate some of the other advice on here, his three priorities need to be -staying active [or getting active...], -finding a solid movement disorder specialist [not just your run-of-the-mill neuro] that can find the right med/diet regimen for him, and -getting in tune with other folks in his age group to track with.
i was diagnosed a few years ago at 30, and have been struggling through the physical side, but have been able to thrive largely because of the above three things - and a great group of family friends who help me deal with all the crap. every person is affected differently by the disease, so he should listen to his own symptoms and realize there are several treatments for each set of nasties that come with the deal. [for example, i had to switch from one early-stage drug to another because of the side effects. both attacked the same symptoms and had very similar chemistry, one just didn't tear up my stomach].
for quite a while, PD can be incredibly manageble, and [insert cheesy effects here] the advances going right now are amazing.
check out clinicaltrials.gov to see if he qualifies for any current studies.
keep in mind that you'll read lots of really depressing stuff about the disease, and most of it is written about people who are 75+ years old. some of the stuff they deal with comes about because they are older, not just because of the PD.
keep up on hope.
posted by rubberfish at 1:41 PM on April 11, 2006
i was diagnosed a few years ago at 30, and have been struggling through the physical side, but have been able to thrive largely because of the above three things - and a great group of family friends who help me deal with all the crap. every person is affected differently by the disease, so he should listen to his own symptoms and realize there are several treatments for each set of nasties that come with the deal. [for example, i had to switch from one early-stage drug to another because of the side effects. both attacked the same symptoms and had very similar chemistry, one just didn't tear up my stomach].
for quite a while, PD can be incredibly manageble, and [insert cheesy effects here] the advances going right now are amazing.
check out clinicaltrials.gov to see if he qualifies for any current studies.
keep in mind that you'll read lots of really depressing stuff about the disease, and most of it is written about people who are 75+ years old. some of the stuff they deal with comes about because they are older, not just because of the PD.
keep up on hope.
posted by rubberfish at 1:41 PM on April 11, 2006
My boyfriend's mother was diagnosesd about ten years ago at 50. One of the things she found very helpful in the earlier years was Tai Chi. It helped her balance and mobility and just made her feel good. It was highly recommended by her support groups and health professionals. Sadly she is well past being able to do that now.
The main struggle for her right now is finding a good specialist. Meds are vital in this disease. They have a limited time span (stop working after a while, although I'm vague on details) so the way they are managed makes a huge difference for both now and the future. And the side effects can be pretty bad if done wrong. Find a doctor who will put time and effort into getting this right. Always keep in mind that when it is done right, the drugs really work.
The two things which have really (really) helped are support groups (specifically for early onset PD) and having her husband be fully involved in her care. He's retired and effectively a full time carer, participates in all her medical appointments and is in total charge of her meds.
There's so much going on in research for this disease. Real improvements in treatment and care are happening all the time. This also means there's a lot of info and options out there, which can be a little overwhelming. Still, it gives a lot of hope too.
posted by shelleycat at 4:11 PM on April 11, 2006
The main struggle for her right now is finding a good specialist. Meds are vital in this disease. They have a limited time span (stop working after a while, although I'm vague on details) so the way they are managed makes a huge difference for both now and the future. And the side effects can be pretty bad if done wrong. Find a doctor who will put time and effort into getting this right. Always keep in mind that when it is done right, the drugs really work.
The two things which have really (really) helped are support groups (specifically for early onset PD) and having her husband be fully involved in her care. He's retired and effectively a full time carer, participates in all her medical appointments and is in total charge of her meds.
There's so much going on in research for this disease. Real improvements in treatment and care are happening all the time. This also means there's a lot of info and options out there, which can be a little overwhelming. Still, it gives a lot of hope too.
posted by shelleycat at 4:11 PM on April 11, 2006
From personal experience (my father): a diagnosis of Parkinson's isn't definitive, and merely places a patient into a box containing many different illnesses (as far as science can tell currently) with significant symptom overlap. That makes treatment very difficult, even under the best circumstances, so keep a diary of the medicines he's put on, the amounts, and his behavior starting immediately afterwards. This will go a long way towards keeping things on an even keel.
To give you an idea of what I'm talking about (without bumming you out with details), my father at one point was on a medicinal cocktail of sorts; each medicine had been added to address a specific symptom, but he was miserable, ill and experiencing painful full-body-on-fire awakenings in the middle of the night. This went on for over a year. A new doctor then yanked him off all of the meds to start over, and the very next day (within eight hours!) he felt so good that he left the house voluntarily for the first time in over a year, and dragged my mother out shopping. It turned out the medicines were collectively making him far sicker than his actual illness's progression was.
Another example: the specific illness (underneath the Parkinson's umbrella) that my father has, if treated with the same medicines used successfully to reduce anxiety in Parkinson's patients suffering from other specific illnesses, causes extensive hallucinations in the patient. In my father's case, he was convinced for a period of time that inanimate objects were talking to him constantly, and the doctor (who insisted that the meds were not the cause of the hallucinations) refused to take him off the anti-anxiety medications -- and in fact doubled the dosage, which led to a very dangerous hallucenigenic event. At that point, my mother insisted he be pulled off the meds, and the hallucinations almost disappeared.
So the doctors do their best to help, but they don't know as much as they'd like, and individual doctors may know even less (or be misinformed) -- and your father may be shuffled from doctor to doctor. It is only you, or your mother, or whoever else spends a lot of time with him that can keep that diary of medicines/reactions, and in so doing give the doctors the patient-specific information they need to help him instead of hinder him.
I wish him, you, and your family all the best. Good luck.
posted by davejay at 5:17 PM on April 11, 2006
To give you an idea of what I'm talking about (without bumming you out with details), my father at one point was on a medicinal cocktail of sorts; each medicine had been added to address a specific symptom, but he was miserable, ill and experiencing painful full-body-on-fire awakenings in the middle of the night. This went on for over a year. A new doctor then yanked him off all of the meds to start over, and the very next day (within eight hours!) he felt so good that he left the house voluntarily for the first time in over a year, and dragged my mother out shopping. It turned out the medicines were collectively making him far sicker than his actual illness's progression was.
Another example: the specific illness (underneath the Parkinson's umbrella) that my father has, if treated with the same medicines used successfully to reduce anxiety in Parkinson's patients suffering from other specific illnesses, causes extensive hallucinations in the patient. In my father's case, he was convinced for a period of time that inanimate objects were talking to him constantly, and the doctor (who insisted that the meds were not the cause of the hallucinations) refused to take him off the anti-anxiety medications -- and in fact doubled the dosage, which led to a very dangerous hallucenigenic event. At that point, my mother insisted he be pulled off the meds, and the hallucinations almost disappeared.
So the doctors do their best to help, but they don't know as much as they'd like, and individual doctors may know even less (or be misinformed) -- and your father may be shuffled from doctor to doctor. It is only you, or your mother, or whoever else spends a lot of time with him that can keep that diary of medicines/reactions, and in so doing give the doctors the patient-specific information they need to help him instead of hinder him.
I wish him, you, and your family all the best. Good luck.
posted by davejay at 5:17 PM on April 11, 2006
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posted by witchstone at 8:51 AM on April 11, 2006