Mom just diagnosed
 

Hi all,

I am a former NT member/mod. My mom was dx'd yesterday with PD. She is very scared and I thought I would do some reading.

Any thoughts or suggestions for a newbie is appreciated. They gave her levodopa but she is afraid to take it and wants to start with 1 per day even though they told her 3 a day spaced out over 6 hours.

So sorry to read about the loss of Rick, an amazing man when I was on a while back.

Shelley

check out www.neurosciencemyths.com. She doesn't have to be afraid of levodopa.

As a UM alum I was surprised to see Rich Rod. Are you related?

Thanks Gerry! Will take a look at the link.

LOL Rich Rod... No I have not been on the site in a very long time since he was the coach so I need to change that :)

Looking forward to football season starting up though. Go Blue! I'm not an alum but rather married a lifelong wolverine fan and fell in love with the team.

Oh Shelley Hello girl LOL:D:D

Sorry to see your mom has PD dx, my dad has had it for 15 yrs now.

Just been having more issues this last year tho..
falling and confusion, some hallucinations..
I do the driving for them now.

What kind of symptoms is your mom having?

Oh and how is your TOS stuff, did you get some of it sorted out?
(or you can post on TOS forum if you want to keep conditions separate..)

Hiya Jo!!

So nice to reconnect with you! Nice to be back to this great community even if for not good reasons with my mom. Doing well myself, pretty sorted out. Will post more on TOS. ;)

For meds , everyone is so different, it is hard to say , mainly for dad we try some thing and see if it helps or has too many side effects..

He hasn't had any trouble with his PD meds.

Gerry quick question, was reading the site you gave me. My mothers biggest fear is the nausea. So if she adds in things like mucuna, will it help limit the nausea? She just crumbles at the first sign of side effects from meds. Anything else that could help?

Thanks Jo. She is supposed to start the meds tomorrow but is so sensitive and gets freaked out by side effects, especially nausea so once she read the pharmacy pamphlet she is freaking out a bit.

Symptom wise she has a tremor, stiffness, hunched over, no sense of smell...I think that is it, maybe more.

Last year dad had some PT sessions for leg strength/core, but they always had to have a driver and he got tired of going/hassle of it. He is 82 now.

Many of his falls were after breakfast , if he sat too long at table and then tried to walk he had fainting type orthostatic hypotension .. but if mom got him moving as soon ash he was done eating he was oK..

the last few falls were due to the the freezing /PD shuffle feet & body moving at different times so down like a tree.. hit his head in the same place every time..only got a concussion 1 time tho..

SINEMET is the most widely prescribed and most effective drug for pd. It has been in use since I believe the 1970's and I wouldn't doubt over a million people use it and do very well in the first few years, many continue to function as they did before they were diagnosed because of sinemet and most dose up initially to 300mg or higher. Search this board for NAUSEA and you'll find very few posts about it. Everyone is different and there is a chance it might make your mother nauseous but the drug has a very short half life so it won't last long, maybe 1-2 hours and she can discuss alternatives with her doctor if nausea occurs. The drug companies have to warn you about every possible side affect to cover their liabilities, if you assumed you'd experience all the side affects in the aspirin package insert you wouldn't take aspirin.
Nausea and low blood pressure are 2 things to watch but I assume your mother has to take something and other parkinson's drugs also have side affects so you cope with side effects no matter what you take, your're putting neurotransmitters in your brain.
. My opinion is don't mess with MUCANA and the HINZ protocol for your mother, do you want to be responsible for having your mother take MUCANA which is a legume, you have no guarantee for purity or % active ingredient regardless of what your're told, it's grown overseas in INDIA, MEXICO, maybe china. Others on this board obviously disagree, just my opinion.

Keep in mind sinemet contains two drugs, levodopa which is a naturally occurring amino acid and cabidopa, which is similar in structure to levodopa and slows down the breakdown of levodopa in the peripheral tissues so more of it gets to the brain. it's the carbidopa which minimizes the nausea. So this is a simpler drug than some OTC drugs.

buy a used copy of THE PARKINSON'S DISEASE TREATMENT BOOK by AHLSKOG, great reference book with very detailed prescribing guidelines for deciding which drugs to take, how much, how to deal with problems like nausea, and when to increase doses, switch drugs, add drugs.
join a support group, contact local branch of APDA to find one.

Thanks Soccertese! My mom is very conservative and afraid of taking anything so we will likely start slow and follow the doctors advice.

I think she likely has the generic of sinemet. . Does that still have both of the drugs you mentioned?

Thanks for all of the advice! I will take a look at the book you mention.

The Peripatetic Pursuit of Parkinson Disease
 

I would also highly recommend a book written by several of the long time members of this board:

The Peripatetic Pursuit of Parkinson Disease

Thanks Tupelo3, I found it on amazon!

If she had the brand name i'd be very surprised, last time i checked it was 3X the price of generics.. Yes, they contain the same 2 drugs. FWIW, I try to get TEVA brand, just trust their quality. Not to say other generics are worse. Generics can be quite different as to active ingredient so make sure you know if your mother gets a different generic, she might have to take more or less or the same. BTW, can you describe the pill, is it yellow and round? just general advice, i always try to keep at least an extra months supply around, it's not a drug you want to run out of and a backup supply in my car or separate from my main supply, accidents happen. if cost is ever a problem you can get a 250mg pill for not a lot more and easily split it. she should have a card on her saying she has pd her drugs and doses.
take meds with at least 6oz of water, read up on food and sinemet, with some people protein negates it's affect so she might have to time her meals, you won't know until she starts. communicate with her doc at the slightest problem or if it isn't helping, doesn't take months to find out and better to be a squeaky wheel. i was diagnosed at 48, started taking it in 2005 and felt great after the first pill and it's still working well at 60.

look into keeping her exercising and socializing, helps anyone with or without pd, and if she's under medicated she'll have a harder time doing both. her symptoms might disappear with sinemet, night not, everyone is different, tremor might not be stopped. it's a starting point.

If she is afraid of the sinemet...try fava beans/papaya/watermellon....
Get book "Natural Therapies for Parkinsons Disease by Laurie Mischley" and try some of the things she suggests first. Go with your gut feelings and hers. Also, sinemet can be cut in half or smaller ...some people get a lot of relief at first with a very small amount. If I would someday have to take it because unable to grow favas for some reason. ...I would put the smallest dose possible in a bottle of water with some ascorbic acid (vit C) in it and sip on it as needed thru-out the day. This is called liquid sinemet. Do research, PD is a life journey..not a weekend vacation or year's sabbatical. God Bless and guide you both. Aunt Bean

Are papaya and watermelon natural sources of dopamine?

anyone is free to do what they want but imho i would recommend to anyone they start with sinemet, a simple pharmeceutical grade drug which is safe and predictable, find out how well it treats your symptoms, and then try alternatives if so inclined.

fwiw, i've attended 2 presentations by Laurie Mischley to pd support groups in the last 2 months and both times she mentioned she highly recommends sinemet to her patients. FAVA and mucana might have been mentioned in passing. I don't think she's an expert on sinemet but she gets around and talks to a lot of neuros and pd'ers from what she says.

liquid sinemet is used to fine tune one's sinemet dose but normally that's suggested for advanced patients taking frequent small doses and is more difficult than it sounds and even then it is recommended you take it on a set schedule using some sort of measurement. imho it should be a last resort, not a first choice. less than 10% of l-dopa gets into the brain and thus less than 10mg gets into the brain with a 100mg tablet.

According to Dr. Hinz the nausea is caused by an imbalance of dopamine and serotonin. Adding the serotonin precursor 5-HTP in the right amount solves the problem.

The site is technical in parts but worth studying. I've been on the protocol for a couple of years with no problems.

Of course, her insurance may not pay and there is frequent mixing of powder with almond milk, orange juice, or whatever, but the claim is that as much levodopa as needed can be taken without side effects and that the disease doesn't progress. So far, that's been true for me.

Here is the article that got my attention originally: http://brainbodystore.com/wp-content...ns-article.pdf


Go Blue!

another technical explanation for potential nausea from taking l-dopa, which is why carbidopa is added. before carbidopa was added to make "sinemet", patients had to take up to 12grams!!! to get an affect and suffered extreme nausea at the start

http://books.google.com/books?id=R0W...eptors&f=false.

I was scared of levodopa, too and kept putting off starting it. I finally got a prescription due to some encouragement I got on this site and then put it off some more because I couldn't find time in my schedule to risk feeling nauseous and miserable. I finally just ate a couple of saltine crackers and took my recommended dose of 1/2 of a 25/100 levo/carb pill and voila! no nausea but instead relief from pain and stiffness I was having. I've continued with the saltines and no problem. I'm kind of disappointed it hasn't helped my small motor though. I did have a depressive episode with crying last night but I have had this same trouble when starting the other two drugs I have taken, Azilect and Amantadine. The sky is blue again this morning though. I will step it up to a full pill on Monday and will keep you posted. Good luck to both of you! Kim

Gerry,
In a nutshell can you tell me what the claim is regarding progression. I am still considering starting the protocol.

Thank you

Gerry,
Does CHK nutrition sell to pharmacists?

Thank you all for the advice! I really like to understand the mechanics and theories of things so I hope to read a lot, gain an understanding if different theories and try to help my mom navigate through this. She is a timid person with medical issues so needs encouragement, support and direction. I hope with all of your knowledge I can help in some way.

Shelley,
Best wishes for your mother.

Shelley - I recommend this new book (2014)

Alter your course

Parkinson's the early years

Monique L. Giroux MD
Sierra M. Farris PA-C

http://www.amazon.com/Alter-Your-Cou...er+your+course

i'm not a medical professional but my philosophy with pd and especially with elderly patients where simplicity is more important and where they have slower metabolisms and possibly other medical conditions, initially go with the conventional treatment that your doctor recommends and can work with you with. if you try the alternative methods and they don't work or have side affects you'll be responsible and having to explain to your mother's doctor what you did. it's totally different if it was you who had pd. it won't take long to find out how well sinemet works and there will be plenty of time to investigate alternative therapies, supplements, etc. later on. if the patient was a young onset with mild symptoms and wanted to explore possible treatments which might slow progression and alt symptom treatments, i'd say go for it, i tried a lot of things when first diagnosed before i went on meds, none had a noticeable beneficial affect.

I think she could wait on starting the med, if she is comfortable with her sx as they are now , and then start the med when her sx get too bothersome...

the members here can chime in on that on any pros & cons of waiting to start the meds..

I recommend the exact opposite. Do NOT start any meds until necessary and after you have tried or exhausted the safer alternative strategies. She has nothing to lose and everything to gain.

You provide me with a list of symptoms, etc and I will provide some possibly effective strategies and alternates choices to deal with those symptoms.

The claim is that the progression will be stopped (They call it petrified) or drastically slowed down. In some cases it is actually reversed. They mention this in several places in the website but don't give a source for the claim or an explanation about why this might be true other than an association with sulfur amino acids. I suspect that it is observational.

I will say that in many respects I am better than when I started. Tremor is now unusual. Dystonia is gone. Balance has improved but walking is still difficult at off times.

Yes. I am a pharmacist and they sell to me. However, they only deal with practitioners so you need to clear it with him or her who usually marks it up. I made an argument that I can buy other supplements at wholesale without a middleman so why not this? Fortunately, my practitioner agreed.

Thank you all! What an amazing group of people. My mom is not great with the internet but I read her all of your posts and she was humbled at the number of people that responded and offered advice. I think she felt that she was not alone and had a place where I could ask questions for her. She was more positive at the end of our call. I'm in California and she is in Buffalo.

Soccertese thank you for the info on the meds. They gave her 25-100 strength and it is a yellow tab that is scored. She split in half this morning and took a half and did not get nauseous which is good but she was very anxious and thought maybe the med did that but I told her likely not. For background she is 70 and has struggled for years with depression and is agoraphobic. She has high blood pressure and diabetes which she gets treated for. She is not in good health and does not exercise. I wonder if the anti depressants over the years contributed to this.,

Bad boy - thank you for your offer to help with the symptoms I really appreciate it. She has pretty noticeable tremors, pretty moderate stiffness, hunched over, shuffles, insomnia, trouble turning on her bed at night. She is slow and really has a hard time moving. She finally went to the doctor after a year of noticeable symptoms because she could not take it any longer. I think trying the meds might be her best bet to try to give her some relief. But it's up to her. I will read up in all the great info you all provided but she is very afraid of most pills so we will see how things go and it will be up to her to decide on any additional supplements and talk to her doc.

Two additional questions. Is there a link to find local support groups that perhaps meet that she could join? And second she has a treadmill but has such trouble walking that I was thinking of getting her a recumbent bike. Is there a need for a bike like a theracycle or us a regular recumbent bike ok?

Niagara Falls Memorial Medical Center of Niagara Falls:
Parkinson's Support Group
(716) 278-4523

Parkinson's Disease Comprehensive Movement Disorder Center

http://www.kaleidahealth.org/services/display.asp?s=355

Support Group List

One inquiry that the Parkinson’s Disease Foundation (PDF) frequently receives through our toll-free helpline is how people with Parkinson’s disease (PD) can find a local support group. While support groups aren’t for everyone, for many people they provide a place to share similar experiences and tips for living with PD.

PDF keeps an unpublished listing of Parkinson's support groups and we would like to invite you to be a part of the list or to call us to find a group in your community. We maintain this list so we can share support group information with helpline callers. Whether it is you seeking peer support or your neighbors who are living with PD who are looking for you, we can help you connect. We also keep our support group friends aware of the latest Parkinson’s news, frequently sending free copies of our publications.

If you would like your support group added to the list, please have your group leader contact PDF online or call us at (800) 457-6676. Are you looking for a support group? Call us at (800) 457-6676 to find a group in your area and we'll do our best to find one nearby.

http://www3.parkinson.org/site/PageS...alo_event_page

1. http://www.apdaparkinson.org/
should link to a site listing support groups for patients and caregivers exercise classes, events in your state.
2. wait to see how the sinemet does before making equipment decisions. hopefully she'll improve enough so she can use the treadmill. of course a stationary recumbent is safer and less stress on the joints, i can still walk/jog but have a stationary recumbent. ideally pd treatment involves a physical therapist for exercise advice and even a nutritionist. check out "pedaling for parkinson's, parkinson's dance.

I sometimes get nauseated when taking my generic Sinemet 25/100. I have been eating a couple of Ritz crackers before taking and has helped immensely.