Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 11-08-2012, 05:21 PM #1
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
Default Recommended Neurologist in Connecticut?

Not happy with my mother's neuro. Are there any that have any other treatments than dopamine enhancing drugs or electric brain stimulation? Not too excited to look at glutathione either. Are there any that are cautious with drug prescription and also, importantly, recognize the dopamine withdrawal process for patients trying to reduce their drug dosage?
egghead5 is offline   Reply With QuoteReply With Quote

advertisement
Old 11-09-2012, 10:47 AM #2
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by egghead5 View Post
Not happy with my mother's neuro. Are there any that have any other treatments than dopamine enhancing drugs or electric brain stimulation? Not too excited to look at glutathione either. Are there any that are cautious with drug prescription and also, importantly, recognize the dopamine withdrawal process for patients trying to reduce their drug dosage?
boy, you aren't going to be happy with any neuro imho, it sounds like you don't trust conventional medicine. there's no way an 80 year old would qualify for a DBS because of their age AND a DBS is only recommended if you respond to sinemet.
The I.V. glutathione treatment was tested by HAUSER at the university of s. florida and found to be totally ineffective. but people are still making a fortune selling it. I've tried everything, I.V. GLUTATHIONE, CHELATION, every supplement mentioned on this board, saw naturpaths that were totally confident they could help me and zippo. think about it, if there was a non-pharmaceutical treatment that was effective, in the age of the internet, wouldn't everyone with pd be using it cuz bottom line, we are all looking for something better than sinemet, were're not sheep.

Diagnosing someone with PD like symptoms in their 80's can be tricky especially when a patient/caregiver isn't letting a neuro do their job. Just my 2 cents.
i totally agree a 2nd opinion is important but keep in mind most neuros are way overworked. have a cookbook approach - try A, B, C, D - and it's up to the caregiver to keep the ball rolling to go down the list of things to try. and these treatments sometimes start off having side affects that go away.

you might want to order a used copy of "THE PARKINSON'S DISEASE TREATMENT BOOK" by AHLSKOG from amazon as a reference. You might check with your mother's insurance company, they might recommend someone or even have a nurse you can talk to.
soccertese is offline   Reply With QuoteReply With Quote
Old 11-11-2012, 10:38 AM #3
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
Default

Well, I am skeptical of all advice, not just that from conventional medicine. My mother has been to about 5 neurologists and all of them basically prescribed Sinemet, but with different doses. She had at least two of them carefully consider her diagnosis.

My mother had side effects on the pills (or at least it correlates, and she does seem to be partly responding to a lower dosage), and we only discovered this after doing our own due diligence. Despite all the side effects listed on the drug, which my mother was having; side effects from the drug were never even considered or mentioned by her neuro until I started to bring it up.

I would think that since this is supposedly a highly "individualistic" disease, different people may respond to different treatments. Yet this does not seem to be what the neurologists say. I do see a lot of evidence online of folks who seemingly respond to other treatments. Its not like I am aware of any cures, so its just treating symptoms anyway. It seems like the meds are a sledgehammer often used to treat very minor symptoms. My mother has not had, and never has had, any symptoms so far as I can tell from Parkinsons itself, perhaps other than a slow walk. In fact before her increase in dosage, we never even considered she had any PD symptoms, thankfully. That's what got the ball rolling on examing the medication more closely. So I would imagine that some strength training, some movement training, etc. may do her very well for her condition.
egghead5 is offline   Reply With QuoteReply With Quote
Old 11-11-2012, 11:12 AM #4
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

best of luck.
i certainly found i had to become an advocate for my parents and my kids whenever healthcare was involved. my parent's generation had complete faith in physicians.
fwiw, my neuro is great, very interested in trying alternatives IF i recommend them but he's never going to recommend them himself due to legal liabilities.

sinemet contains a natural occuring amino acid and carbidopa. less than 5% of levodopa gets to your brain so of 300 mg of sinemet, 15mg might get to your brain. maybe a lot more gets to your mother's brain. but think about how much amino acids gets into your bloodstream when eating something high in protein such as cheese, tofu, chicken? it's an awfully safe drug.

http://health.nytimes.com/health/gui...ase/print.html
soccertese is offline   Reply With QuoteReply With Quote
Old 11-11-2012, 01:57 PM #5
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
Default

I'm not sure what a safe drug is. The fact is these are all situation dependent. Peanuts are safe, but not to someone with a peanut allergy. Etc. My mom has not responded well to an additional 100mg of Sinemet. She appears to be suffering some withdrawal symptoms by its later decrease. Dopamine agonists have been shown to cause addiction/withdrawal. Dompanine enhancing drugs have been shown to cause addiction/withdrawal. Logic would tend to indicate that Sinemet could exhibit similar charachteristics at any dosage on par with a dosage that would similarly be thought to have beneficial effects. We may not have a peer reviewed study that indicates Sinemet can cause addiction/withdrawal, but it certainly seems plausible. We can't make all our decisions on scientific studies anyway. But we can try things and test correlations. The problem is the doctors are biased that their FDA approved medicines will ever be the root of negative effect-correlations, and its the last thing they look for. Even when all the evidence points otherwise.
egghead5 is offline   Reply With QuoteReply With Quote
Old 11-11-2012, 03:00 PM #6
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

now i'm really offended.
i know i'm not going to change your mind but for millions of people taking sinemet, it is a life saver. parkinson's was an early death sentence before levodopa. in the same category as insulin, it's been around since 1970. it is a safe drug and it's impossible to be allergic to it. there's nothing "relative" about it.

what do you expect from treating a brain disease, perfection? drugs with no side affects? it's the brain, your're dealing with a very complex organ, billions of cells, limited repair mechanisms, highly specialized, cells that respond differently to different neurotransmitters and of course there is going to be side affects to oral drugs, they are going to affect areas of the brain and body where they normally are in much lower concentrations.

the elderly have more side affects with l-dopa, they have that problem with all drugs because they have slower metabolisms, it's no fun being old in most cases. it's no fun having pd.

sorry, just strongly disagree with your opinions .
soccertese is offline   Reply With QuoteReply With Quote
Old 11-11-2012, 08:11 PM #7
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
Default

Well, again, I am not doubting Sinemet can work for some people. In my mother I have yet to see any demonstrable benefit, and the neurologist says as much. The neuro suggests we just keep changing the dose until we see if my mother responds. Why we need medicine in the first place is not clear since my mother never complained of any symptoms of PD. It says as mcuh in the doctors notes from her first diagnosis. But I know the inclination of allopathic doctors is to give meds at the drop of a hat.

It's always a cost/benefit analysis, and in this case I see many costs, but not sure of any benefit. All my mother's close friends are wondering why the past few months she has had all kinds of problems. We could chalk it up to age and forget about it and double down on Sinemet. But it would appear to me that whatever the results of now reducing dosage (improved sleep, glimpses of better mental function, making jokes, etc.) the previous increase in dosage definitely had a part in negative side effects. It is a drug (like all of them) that in some circumstances, can be dangerous. Otherwise there would be no warning label on it. For example one circumstance it can be dangerous is in amounts beyond what your specific body can tolerate. Evidently this threshold was crossed in my mother's case. The neuro said this was likely so, herself, given my mother's symptoms.


Quote:
Originally Posted by soccertese View Post
now i'm really offended.
i know i'm not going to change your mind but for millions of people taking sinemet, it is a life saver. parkinson's was an early death sentence before levodopa. in the same category as insulin, it's been around since 1970. it is a safe drug and it's impossible to be allergic to it. there's nothing "relative" about it.

what do you expect from treating a brain disease, perfection? drugs with no side affects? it's the brain, your're dealing with a very complex organ, billions of cells, limited repair mechanisms, highly specialized, cells that respond differently to different neurotransmitters and of course there is going to be side affects to oral drugs, they are going to affect areas of the brain and body where they normally are in much lower concentrations.

the elderly have more side affects with l-dopa, they have that problem with all drugs because they have slower metabolisms, it's no fun being old in most cases. it's no fun having pd.

sorry, just strongly disagree with your opinions .
egghead5 is offline   Reply With QuoteReply With Quote
Old 11-12-2012, 08:51 AM #8
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

glad this board was available to allow you to vent about doctors trying to help your mother.
that i can understand, i went thru many frustrating discussion with my father's doctor about his declining health. but i would have never taken my frustration out on strangers on a message board who were basically trying to help, i find that incredibly selfish. it's as if you think were are responsible because we take parkinson's meds. think about it. you have zero empathy for people that endure considerable suffering day in and day out and are happy there are medicines out there that can help. for you to bring up pdrecovery as your source of information in forming your opionions adds insults to injury.

the issue isn't sinmet, it's what is your mother's problem what you can do to resolve it and you were advised to get another opinion. to come onto this board and question it's benefit in parkinson's is like questioning diabetics using insulin.
soccertese is offline   Reply With QuoteReply With Quote
Old 11-12-2012, 09:58 AM #9
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
egghead5 egghead5 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 21
10 yr Member
Default

Sorry to offend you, and supposedly others, but how did I / where did I manage to do that? Because I questioned the use of a drug in a specific case?

Anyway, whatever the case may be, do you have any suggestions for neurologists you would trust that we may be able to talk to? Right now all we have is a physician's assistant.

Quote:
Originally Posted by soccertese View Post
glad this board was available to allow you to vent about doctors trying to help your mother.
that i can understand, i went thru many frustrating discussion with my father's doctor about his declining health. but i would have never taken my frustration out on strangers on a message board who were basically trying to help, i find that incredibly selfish. it's as if you think were are responsible because we take parkinson's meds. think about it. you have zero empathy for people that endure considerable suffering day in and day out and are happy there are medicines out there that can help. for you to bring up pdrecovery as your source of information in forming your opionions adds insults to injury.

the issue isn't sinmet, it's what is your mother's problem what you can do to resolve it and you were advised to get another opinion. to come onto this board and question it's benefit in parkinson's is like questioning diabetics using insulin.
egghead5 is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Connecticut Chapter of the APDA - High school senior scholarships CarolynS Parkinson's Disease 0 01-11-2012 08:23 PM
Looking for Doctor in Connecticut Jodee Reflex Sympathetic Dystrophy (RSD and CRPS) 0 01-17-2009 12:49 PM
Any great MDs in Connecticut? Dejibo Multiple Sclerosis 3 07-05-2008 11:08 AM


All times are GMT -5. The time now is 01:33 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.