[VIOLA]

Hi. This is the first time that Im trying this, so I hope it works ......
Im online trying to find some guidance for my father. He had a series of heart attack 3 yrs ago and when he recovered he displayed all of the symptoms of Parkinsons. He was diagnosed, but the doc is reluctant to give him PD medication as he thinks it might react badly to the Heart medication. I don't trust doctors much... Im been researching alternative medication (esp Mucuna), desperate to find another way to help my father. He was so proud and is now reduced to a mindless, shaking shell of a man. The docs say that the damage was due to the heart attack, but they also diagnosed PD. So my question is: how much of his present condition is due to Brain damage from heart attack and how much is due to PD and thus treatable. His caregivers don't seem to care much and leave him as he is. Please can anyone help?

[Koala77]

Hello Viola, and welcome to NeuroTalk.

I'm so sorry to hear about your Father. Heart attacks are really scary at any time, but to have had more than one of them, you must have been worried sick.......and now this diagnosis of Parkinson's.

I wish I could help you but unfortunately I don't know that answers to the questions that you've asked. You have however some to the right place. If anyone can help it'll be the wonderful members in this forum.

I wish you luck in getting the advice that you need, and welcome again.

[Jaye]

As I recall (not a way to get reliably accurate information), an excess of Levodopa can cause heart flutters, eyelid flutters, and all sorts of odd symptoms. Is this a case of "this is an old guy who doesn't matter"??? I'm sure these people can be convinced that human suffering is human suffering, and that they could consult with a clinical pharmacologist to ascertain the effects of various drugs. As a backup, rxlist.com is a place to start. A starter dose of Sinemet might help, I would guess, as a typical first choice for older people, but see parkinson.org or one of the other charities' websites to find out about the medications and where to find a doctor who knows PD. Just a neurologist is too much of a generalist in many instances; most of us rely on at least a consultation with a Movement Disorder Specialist (MDS), a subspecialty of Neurology.

You are a wonderful person to look out for your dad like this.

Best of luck,
Jaye

[ol'cs]

I don't think that they can connect dads heart attacks with PD symptoms, and from a litigation point of view i wouldn't think that they would want to.
You are correct not to trust doctors where seasoned neuorologists should tread. By telling you NO sINEMET, he has only forced you to go get Mucuna which doesn't have Carbidopa in it and so allows more dopamine to be produced outside the brain where it is right there to cause any further heart damaging effects. Boy that gets me .
Doesn't he know of the alternative dopamine agonists for PD treatment? You NEED a good neurologist NOW. I can guarantee you that he can get that horrible shaking under control, by using either an anticholinergic drug, amantadine (which should help all around, but usually only for a few months), or a benzodiazepine, or some other minor tranquilizer. In the mean time see how he reacts to alcohol or Benedryl? I am assuming that dad is an older PD patient, so any drug therapy must be done slowly with low starting and maintainence dosing, until he proves that he won't be adversely affected in any way.
How does your doc know dad has PD and not just a bad case of tremors? Is Dad very slow, have trouble walking, loses his balance, low voice, bad handwriting, immobile facial expressions, hard to swallow, chokes on food, tends to have symptoms on one side of his body more than the other, loss of smell, agitation and worse than usual when stressed out?
AS far as I would say, you are not sure yet if it IS PD that he has. He is going to have to get more testing done before a PD diagnosis is for sure. Don't start worrying just yet. cs

[VIOLA]

Thank-you for all your advice and help and concern
I just found out that my dad is on a low dose of Sinemet, but Im not quite convinced of its benefits. I've read a lot about how Levadopa helps with symptoms of PD, but it destroys the neurotransmitters at the same time. My sister looks after my father and only told me about the PD a week ago. They kept me out of the loop ... in my sister's opinion PD is nothing to be concerned about and since the symptoms are not serious (in her mind) nothing needs to be done. He suffers from severe tremors and his mind is not "there" so he is unable to say anything. When I found out I went online and did some research. Im astounded and amazed at the seriousness of this disease. Reading up on it and at the same time thinking of my father who has been suffering in silence all this time, makes me want to break out in tears. But anyway, back to my question, Can I replace Sinemet with Mucuna and if not, is there anything else that I can give him which will help, but is still safe to use for someone who has had a heart attack? Please can anyone help?

[stevem53]

Welcome Viola..I am sorry to hear about your fathers suffering, and I hope you find some solutions

I am curious..where did you hear that levadopa destroys braincells, Ive never heard of that before?

[Fiona]

Hi Viola and welcome...I am sorry about your Dad - I know that can be enormously difficult. Hard for us to advise specifically (or at least me!) - if it were my Dad, I would probably look for some comprehensive approach that focused less on symptoms and more on overall health...eg, Traditional Chinese Medicine. However, that's me and my off-the-beaten-track take on things, which is not always the best and definitely is not for everyone.

Originally Posted by stevem53

Welcome Viola..I am sorry to hear about your fathers suffering, and I hope you find some solutions

I am curious..where did you hear that levadopa destroys braincells, Ive never heard of that before?

Well, I have posted this before, but this is what finally convinced me - even tho it's hypothesized here - the source is hugely credible. Scroll down to item 0005:
http://www.freshpatents.com/Pharmace...0060165822.php

[Jaye]

We are are all right to look for and insist upon something better than Sinemet, but let's let Dad have a standard medicine that will help him and be acceptable to all involved. I suggest that standard medical practice (at the MDS level) is what will work in his situation.

Viola, it's possible that the right medications could make your dad more responsive, too. I see your job as an advocate for reason and better medical care for him.

If you and your dad would still like to experiment with mucuna, You will pick up a lot of background on mucuna here: http://www.parkinson.org/NETCOMMUNIT...=459&srcid=461
a scientific study of it here: http://www.pubmedcentral.nih.gov/pic...1&blobtype=pdf
and a discussion of Zandopa dosage here: http://www.wemove.org/ubb/ultimatebb...pic/17/14.html

BTW, a thought just crossed my mind! "God helps those that helps themselves" is NOT in the Bible.

Jaye

[Fiona]

Originally Posted by Jaye

We are are all right to look for and insist upon something better than Sinemet, but let's let Dad have a standard medicine that will help him and be acceptable to all involved. I suggest that standard medical practice (at the MDS level) is what will work in his situation.

Viola, it's possible that the right medications could make your dad more responsive, too. I see your job as an advocate for reason and better medical care for him.

If you and your dad would still like to experiment with mucuna, You will pick up a lot of background on mucuna here: http://www.parkinson.org/NETCOMMUNIT...=459&srcid=461
a scientific study of it here: http://www.pubmedcentral.nih.gov/pic...1&blobtype=pdf
and a discussion of Zandopa dosage here: http://www.wemove.org/ubb/ultimatebb...pic/17/14.html

BTW, a thought just crossed my mind! "God helps those that helps themselves" is NOT in the Bible.

Jaye

Jaye, with all due respect - and mine for you is considerable - I would like to suggest that the beauty of this forum is that there are many perspectives on many experiences. Of course we all want very much to help Viola and her Dad, but I would not be speaking from my heart if I didn't mention what I wish I had heard long ago upon my diagnosis. At that time all I had to refer to was the PD status qo and was desparate for other info and another way to look at things, which might have helped me at the time. Some of us feel most secure and happy within the system, some of us outside of it. I offer what I have to give and trust Viola to know what resonates for her and what she'd like to find out more about - I am not making pronouncements about what she should do. Given that, I think your advice is sensible and reassuring, if one is of like mind - so wonderful. That is there for her and us and everyone. And so am I.

[VIOLA]

HI

These 2 are a few of the many references I found to the harmfull effect of Lecodopa:

Levodopa and the progression of Parkinson's disease.
N Engl J Med. 2004 Dec 9;351(24):2498-508.
Despite the known benefit of levodopa in reducing the symptoms of Parkinson's disease, concern has been expressed that its use might hasten neurodegeneration. This study assessed the effect of levodopa on the rate of progression of Parkinson's disease. CONCLUSIONS: The clinical data suggest that levodopa either slows the progression of Parkinson's disease or has a prolonged effect on the symptoms of the disease. In contrast, the neuroimaging data suggest either that levodopa accelerates the loss of nigrostriatal dopamine nerve terminals or that its pharmacologic effects modify the dopamine transporter. The potential long-term effects of levodopa on Parkinson's disease remain uncertain.

Is levodopa toxic?
J Neurol. 2004 Sep;251 Suppl 6:VI/44-6.
The objective of this workshop was to review and discuss the debate on neurotoxicity of levodopa in the treatment of Parkinson's disease with consideration of preclinical and clinical findings. We concluded that in particular preclinical outcomes of in vitro models of neurodegeneration describe neurotoxic effects of levodopa, whereas trials in animal models provided controversial results. To date, clinical trials in Parkinson's disease patients showed no convincing proof of direct neurotoxic effects of levodopa on progression of neurodegeneration with various applied functional imaging techniques particularly with specific radiotracers for nigral dopaminergic neurotransmission. However, the controversy on neurotoxicity of levodopa only partially considered indirect mechanisms, i. e. levodopa-associated homocysteine elevation. But there is accumulating evidence that this long-term side effect of chronic levodopa administration dose dependently individually contributes to progression of neurodegeneration due to increased release of neurotoxins, induction of oxidative stress and mitochondrial dysfunction according to results of in vitro and animal trials and to at least peripheral neuronal degeneration and increased risk for onset of atherosclerosis-related disorders according to clinical trials in Parkinson's disease patients. From this point of view we demand that future research on the efficacy and putative neurotoxicity of antiparkinsonian compounds should also consider putative toxic long-term effects of drug administration and should look for putative peripheral biomarkers and individual, environmental or nutritative risk factors in order to establish a preventive therapy, i. e. folic acid administration in the case of levodopa-associated homocysteine elevation.

info comes from: http://www.raysahelian.com/parkinson.html