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Newbie with Thanks and Questions

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Unread 02-13-2013, 10:07 AM   #1
Mrs.Mac
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Default Newbie with Thanks and Questions

Hello! I'm new here and before I starting asking questions I must say that you are all so helpful!! I have been reading for hours and hours since last week. I’ve learned SO much!

Last Monday, my husband's neuro said that it is Parkinson's not essential tremor. Which we kinda of thought already – that’s why we were in for a second diagnosis.

Background:
Husband (49 yo) felt the first tremors about 10-11 yrs ago. Very slight in right hand.

Last 5 years he has progressed a lot. The only symptoms he has are tremor and slow movement (I also think he has the face mask developing and has some trouble interacting with others, slight depression etc. – but he doesn’t necessarily agree.)

Now it is bad in right hand and right leg. Sometimes in his jaw and just starting a bit in his left hand (still slight). Although if he totally zones out watching TV etc. and relaxes the tremors do ease. As soon as he starts talking etc... they come back. Does that mean anything in particular?

He is not on any meds. A couple of years ago he tried miraplex and one like miraplex (he’s never tried seniment sp?) and did not react well at all. He only took them for a about a week each and was horribly sick. Knowing what we know now he probably didn’t stick with them long enough to see if he would adjust. BUT, also knowing what we know now we’re kinda glad he didn’t.

After all the reading and researching we have decided that we’ll try to handle it naturally (supplements, fava beans etc…) first to see if he gets any relief. We may end up on meds at some point but we really want to exhaust all our options.

That said – now I’ve got a few questions to start…. Aunt Bean??? 

1. Which works better – sprout tincture or fava tops tincture?
2. Can you add dried, ground papaya to sprout balls?
3. Can you ferment papaya using a yogurt maker?
4. How long do you dry the fava tops before making the tincture?
5. As someone starting out ….best to take munuca and fava or just
add munuca as needed?
6. Any other suggestions for a PWP just starting to “treat” PD???

Would love advice/suggestions!

Well…enough questions for now.  We ordered several books from Amazon (including Naturals Therapies for PD by Mischley) There will, of course, be more questions as we go. AND, I’ll make sure to report back!

If you read this far – thanks!! We're trying to remain upbeat in the face of the diagnosis. We try to keep reminding ourselves that nothing has really changed - now we just have the name to stick on what has been going on.

p.s. still a bit scary though
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Unread 02-13-2013, 11:11 AM   #2
Conductor71
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Quote:
Originally Posted by Mrs.Mac View Post
Hello! I'm new here and before I starting asking questions I must say that you are all so helpful!! I have been reading for hours and hours since last week. I’ve learned SO much!
Welcome to you and your hub. I cannot answer many questions on supplements, but wanted you to not feel discouraged or ignored if your questions are not answered right away. We can be spotty when replying. You may know this already...searching the forum "archives" yields even more info.

I sooo wish I would have found this forum before I started traditional PD meds. I could still do it but the thought of withdrawal? meh. not just now.

Laura
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Unread 02-13-2013, 11:35 AM   #3
soccertese
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1. has your husband eaten fava beans with no problems? some people have serious side affects.
2. just curious, from your reading this board, how many people do you think nationwide are taking fava tincture besides aunt bean?
if i were you, i'd try sinemet first, won't kill your husband and you'll know quickly if he responds to l-dopa. why spend weeks/months playing around with mucana or fava if it turns out he doesn't respond to l-dopa, the main active ingredient in both? you'll likely know in a few days. if he responds well, then pursue the alternatives if that's what you want to do. a few days on a low dose of sinemet and stopping won't be addicting or imho harmful but check with your doctor.

my impression is most people use mucana as an adjunct to sinemet. i can't remember any long time poster here using only mucana.
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Unread 02-13-2013, 12:01 PM   #4
johnt
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Mrs Mac welcome to the forum.

You write:
"Husband (49 yo) felt the first tremors about 10-11 yrs ago. Very slight in right hand."
These details fitted me exactly when I was diagnosed.

There's no denying that it's a bad illness to have. But, if you can come to terms with it, it's possible to have a good life for many years. Now, 8 years after diagnosis, although my symptoms are worse, I am happier than I was in the first 5 or 6 years post-diagnosis.

Advice is difficult because things vary from person to person: what may work for one may not work for another.

But what helped me the most was joining a support group, part of Parkinson's UK (there are equivalents in other countries). Unfortunately, it took me many years to join them. Beyond that, this forum has been a great help.

It is worth contacting 23andme who will give a free genetic analysis on a sample that you provide.

Finally, I would advise your husband to keep track of his symptoms, so that he can see whether changes he makes to his meds or lifestyle are improving things.

Thanks for joining this forum: the more people there are, the more that we can learn from each other.

John
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Born 1955. Diagnosed PD 2005.
Current meds: stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
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Unread 02-15-2013, 07:33 AM   #5
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Welcome to the forum. First, I advise you to get a G6 pd blood test always before started on eating or making things from GFava. Favism is a rare thing , but if you have it..can be deadly. Your doctor can order this, or you may have places like we have here
ANY LAB TEST NOW (business)...where anyone can walk in and ask them to do any test without a dr order and call you with results or mail them out to you. Cost me $60 to have this done and didn't have to go through a doctor.
After you get the results back ENZYMES OK , then start with cannned favas and see if that gives any support to him. Some peoople notice a big difference just having a meal of favas. Aftter that , you can try buying organic sproutable beans / soak 24 hrs in filtered or spring water. Then, rinse and drain for 3 whole days. Peel/ cut out bad spots / rinse/ steam lightly and enjoy several / they freeze well. I am still experimenting with sprout tincture to get the maximum l-dopa from them. Actually have one ready to strain today...will report on my new trial next week (still looking for a chemist to test the tincture for l-dopa amounts) It is amazing though how little natural l-dopa can be used in comparison to synthetic..the body seems to recognize and utilize it more efficiently.
The one thing that tinctures have over eating sprouts is near immediate response absorbing l-dopa into the mouth vs stomach route. My tops tincture works the fastest for me and is portable in a small dropper bottle in the pocket.
Hope this answers all your questions. Got to go...send a private message if necessary...I don't always check all the threads and may never see a question to me there.
God Bless You...Have a great day Aunt Bean
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Unread 02-15-2013, 07:35 AM   #6
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Welcome to the forum. First, I advise you to get a G6 pd blood test always before started on eating or making things from GFava. Favism is a rare thing , but if you have it..can be deadly. Your doctor can order this, or you may have places like we have here
ANY LAB TEST NOW (business)...where anyone can walk in and ask them to do any test without a dr order and call you with results or mail them out to you. Cost me $60 to have this done and didn't have to go through a doctor.
After you get the results back ENZYMES OK , then start with cannned favas and see if that gives any support to him. Some peoople notice a big difference just having a meal of favas. Aftter that , you can try buying organic sproutable beans / soak 24 hrs in filtered or spring water. Then, rinse and drain for 3 whole days. Peel/ cut out bad spots / rinse/ steam lightly and enjoy several / they freeze well. I am still experimenting with sprout tincture to get the maximum l-dopa from them. Actually have one ready to strain today...will report on my new trial next week (still looking for a chemist to test the tincture for l-dopa amounts) It is amazing though how little natural l-dopa can be used in comparison to synthetic..the body seems to recognize and utilize it more efficiently.
The one thing that tinctures have over eating sprouts is near immediate response absorbing l-dopa into the mouth vs stomach route. My tops tincture works the fastest for me and is portable in a small dropper bottle in the pocket.
Hope this answers all your questions. Got to go...send a private message if necessary...I don't always check all the threads and may never see a question to me there.
God Bless You...Have a great day Aunt Bean

Last edited by Aunt Bean; 02-15-2013 at 07:35 AM. Reason: already is posted
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Unread 02-19-2013, 02:20 PM   #7
Mrs.Mac
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Thanks for the responses. Sorry it has taken me so long to respond. Life was quite busy before the PD diagnosis .....

We're slowly adjusting to the news in our minds. Still waiting for the G6PD bloodtests to come back. We've already added some additional supplements. Waiting to see if husband feels better. He doesn't talk much (esp. about pd) so it is a bit frustrating - I'm trying not to bug him; just observe and wait for him to share.

Thanks for all the thoughtful suggestions.
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Unread 02-19-2013, 11:53 PM   #8
ol'cs
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Default Do not fear Sinemet

If your husband wants his movement back sinemet offers a solution. It works well for many years for many of us,it has both helped and hindered our journey through pd. nobody lives forever.
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