Thank you Andrew for suggesting to start a blog of chosen therapies of our own.

Hi All,
I have been thinking of posting this question for a while too. I would like to include this topic in our PD book (with your approval of course!). I have compiled a list of therapies/alternative treatments/dietary supplements/anything else that made life easier for PWP that have been posted here. I am sure I am missing some, feel free to add to this list if you have a new one. In addition, I would appreciate if you could share your experiences with new therapies one more time under this thread (even if everyone knows about your belief!!).

The basic information that I am interested in is as follows. However, more details and additional info is always welcome.

What are your remedies:
What prompted you to start on these
How long have you been using them
what is the dose, frequency and timing (when needed or everyday)
their effect on your physical and mental abilities
Do you feel that these remedies have slow down your progression
is the cost worth the benefit
would you recommend it to another PWP?

Here is a list of remedies or therapies that have been discussed in the last 2-4 years
Yoga
Tia chi

acupuncture
massage
chiro
Ayurveda

Over the counter medicines
Ibuprofen
DXM/ Benadryl
naltrexone LDN

Vitamins
amino acids
CoQ10
natural herbs
anti-oxidants

Mucuna
Dopavite

Food products
Curcumin
ginger
green tea

And some of the things that make a huge difference to PD, vary from individual to individual and are not measurable........ I am including in the list anyway, feel free to give your comments!

Meditation
Attitude and frame of mind
Music/art therapy
Family support
support groups
managing stress
managing depression

Finally, have you ever skipped/forgotten to take your meds because you were so deeply involved in a project or something like that and did not have any off-symptoms till you are done

thanks and hope to get your responses.

Girija

Girija-

It may be important to realize that there are at least three groups or classifications to be considered.

1- Things we take to slow or halt progression. These do not provide feedback and are a longterm matter. We can only base these on existing research and logic.

2- Things we take in hopes of repair of existing damage. These, too, are a leap of faith although less than the first.

3- Things that lessen symptoms. Unlike the other two, these have effects that we can perceive.

In group 3, I would place the following-

The combination of Acetyl-L-Carnitine and Alpha Lipoic Acid. I can detect a measurable increase in the time that I can balance on one leg within 48 hours of starting this.

Electrolytes, particularly potassium. On a half-dozen occasions I have reversed major problems quickly. One of those was so bad that I could not stand up. Within ten minutes I was fully recovered.

While still new to me, American skullcap is shaping up to smooth out and perhaps even reduce my meds. It also seems to have a good effect on my blood pressure.

Rick,
Thank you.
Yes I agree there are several ways to classify this kind of information, the three you mentioned are good. In many ways, this is the least scientific way of collecting information......Too many interacting factors, no controls and oh well I can go on and on! Clearly not the right way to do a study.....

My intentions are non-scientific. I want to collect information to document how diverse, open-minded and well read our PD community is; to highlight all the scientific discussions, experiments of the lab rats and the hypotheses formulated......in many ways no different than the scientific community. I like to bring out this point via the PD book and hope this sends a message to the scientific and medical community that it is time to listen to patients.

Ok folks there you have my reasons for asking these questions, please give your comments, suggestions and experiences......

Thanks

Girija

Hi Girija, do not know if my husband's regime is applicable; so many of the vitamins and supplements are directed at damage we feel was caused by the lipophilic statin, Lipitor. The resultant Parkinsonism is not the direct target, rather the mt dysfunction, depleted selenoproteins and thus glutathione reductase, depelted phospholipids, and depleted CoEnzyme Q10 as a result of the statin are the targets.
He does avail himself of Tai Chi and Chi Gong at least once a week. He notices a positive effect upon his sense of balance after these session

He also practices Pilates 3 times/week. I note an improvement in his posture after each session, and he feels an increase in body strength from doing pilates over the past 5 yrs.

He also has acupuncture, now infrequently. During the first 3 yrs following his diagnosis, he had acupuncture about 1X/month. His acupuncturist taught him an acupuncture pressure point he could apply to lessen his hand tremor; this continues to work, though not as well as initially. My husband is not as disturbed by the tremor as he is with other symptoms, so ignores it mostly. He maintains he has a feeling of well being following the sessions, though could not identify any other benefits. I notice a decrease in episodes of hand tremors for at least 24 hrs following a session.

Husband began CoQ10 supplements @100mgm/day, prior to his diagnosis in Aug, 2004, because we discovered that Liipitor caused a depletion in this substance. At the time of his diagnosis, he was advised to increase this to 1200 mgm/day, based upon Shults' and Beal's study published in 2002. If he forgets one of the doses of CoQ10, he is very aware of doing so. Initially, his facial expression was less masked, his walk less shuffled and bradyknesia lessened from using CoQ10 @ 1200mgm/day as a monotherapy. Now he notes a definite increase in bradyknesia if he misses a dose.

In addition, my husband works out on weight machines 7 days/week. His cardio is usually exxercise on elliptical machine, though at least 1 day/week he runs (he maintains short, slow distances are now his specialty. )

Vitamins and Supplements:
ascorbyl palmitate ~ 4X/week
Vitamin B1 (benfotiamine) every day
Vitamin B 2 every day
Methylcobalamin /day
Folic Acid every day
P-5-P (B 6) 3X/week
selenium 3 X/week
N-acetyl cysteine several times/wk
r-alpha lipoic acid every day
acetyl-l-carnitine every day
magnesium orotate 200mgm/day
magnesium glycinate 200mgm/day
DHA 200mg/day
Probiotic 1 tablet/day
Pantethine every day
mixed tocopherols, tocotrienols 1 capssule 2X/week
mitochondria formula containing phospholipid (just started 2 days ago) 1/day
Calcium chewables ~3X/week

Brocco Sprouts--handful/day (sulforaphane)
Blueberries via smoothie daily

this list varies over time
Just beginning to return Vit D3 to his regime. He had difficulty with the 50,000IU doses he took several months ago,2 weeks apart, so we have been reluctant to reintroduce it to the mix. we started with 500 IU's every few days.

Girija,
Given the recent postings on exercise as a therapy, I wonder if that should not be included on your list as well. There seems to be a lot emerging about the therapeutical value of walking and cycling for instance, and these would seem equally as important as yoga and tai chi.

I'll get back to your list soon, and post for you

Thanks for this very interesting thread.

Lindy

Okay, here is at least a partial list:

ALA
Acetyl L-Canitine
Fish Oil
Curcumin
Vit D-3
Benedryl
Muscle relaxants
Physical Therapy
Art
Exercise
Music and dance
Trike
Meditation
Psychotherapy
Starting Ti Chi (sp?) in 2 weeks

Yes to forgetting meds - gardening - I've gone at least 2 hours past my scheduled dose with no "off" experience!

Note that not all of my experiments have gone well - I fell off my bike and broke my arm a couple of years ago, before that I put 3 stress fractures in my foot attempting to walk 10,000 steps a day, fell a week ago in PT trying to do a dance step and am still being evaluated for a possible fracture....oh, and had bad enough wipe out on trike that it may find a new home this spring...

Sasha

very very interesting but.......what is the dose, frequency and timing (when needed or everyday) ???

[QUOTE=girija;627240]Thank you Andrew for suggesting to start a blog of chosen therapies of our own.

Hi All,
I have been thinking of posting this question for a while too. I would like to include this topic in our PD book (with your approval of course!). I have compiled a list of therapies/alternative treatments/dietary supplements/anything else that made life easier for PWP that have been posted here. I am sure I am missing some, feel free to add to this list if you have a new one. In addition, I would appreciate if you could share your experiences with new therapies one more time under this thread (even if everyone knows about your belief!!).

The basic information that I am interested in is as follows. However, more details and additional info is always welcome.

What are your remedies:
Basic - High dose Vit C and D

No red meat
Organic food whenever possible

What prompted you to start on these
It is more that I reduced supplements to this, prior to Pd I was taking a variety of heavy duty supplements, and found that I could not tolerate most of them alongside dopa + entacapone

How long have you been using them
what is the dose, frequency and timing (when needed or everyday)
1 daily high dosage

their effect on your physical and mental abilities
these two are the ones that I can notice a downside if I stop taking them

Do you feel that these remedies have slow down your progression
No

is the cost worth the benefit
Yes

would you recommend it to another PWP?
I would say take what you feel improves your quality of life, we are all
different

Here is a list of remedies or therapies that have been discussed in the last 2-4 years

Tai chi -
because of the very slow movement of Tai Chi, which is anyway designed for people over 50, martial arts people come to it late usually, it is fantastic at keeping all the smallest muscles working, and teaching the practitioner how to move, and how to really understand balance. A good teacher is worth a lot! I would recommend this, it can be adapted even for people with minimal mobility

acupuncture - did a year of weekly acupuncture sessions, treatment was effective for 2-3 days, was great as a maintenance treatment, but very expensive, benefits did not last once treatments stopped
massage - lovely if you can get it........

Ayurveda - Not quite the same thing, but cooking to ayurvedic principles is good, though hard to maintain in the west. Balancing the type of food to weather, temperature etc is good, but means you spend lot of time cooking.


Tibetan medicine - Helps balance the whole person, found it very valuable, it does not deal with PD itself, but does help with contributiing factors. Was advised to walk at least five miles daily as most effective treatment, needless to say am not that motivated to do so, five miles would take me most of the day to accomplish......I am very slow - treatment was very beneficial

Over the counter medicines
Ibuprofen - this and aspirin have a positive effect on my PD, am sure they act on ongoing brain inflammation.


natural herbs - Have used ginko for circulation and memory with some positive results


Dopavite - no particular benefit


Curcumin
and ginger - I regularly include both these in my diet, and have done long term. It is impossible to say what exactly they do, but I am positive they are beneficial.

Meditation is an excellent way of learning about your own responses to difficult situations, and to gain perspective, reduces anxiety

Attitude and frame of mind - having a good attitude has helped, as has acceptance. It has allowed me to value what I have, and accept any losses
with some level of grace.

Music/art therapy - This is the fun part, Music especially that I can dance to is great, I may not be able to walk well, but I can dance. Along with art it seems to engage a part of my brain that is wholly unaffected by PD, I can be absorbed in either, and PD recedes into the distance.

Family support - helps to have a supportive family though it doesn't always happen that way, one of my two sons is in denial, the other is very supportive.

support groups - online mainly, do not know what I would have done without the fantastic online support. Have only very recently encountered a 'real time' group, who also look to be exceptional.

managing stress - am quite laid back naturally, stress only if in very public position

managing depression - though I am very laid back I think there is an element of depression there, not of a misery type at all, just always functioning at a very sub optimal level, hard to describe, and have never known what to do about it.

Exercise - I really wish I had a personal trainer!! I KNOW exercise would benefit me, but it is all or nothing - the all leaves me exhausted and non functional, the nothing does the same, a personal trainer or failing that a supervised and regular routine would do me good. I used to love walking, balance is an issue now, and on my own or on a machine is not the same.

Finally, have you ever skipped/forgotten to take your meds because you were so deeply involved in a project or something like that and did not have any off-symptoms till you are done

Yes, this happens frequently if I am working on something and get really absorbed in doing something I love. Time becomes irrelevant.....

thanks
Lindy

Dance.
www.parkinsonsdance.blogspot.com

Hi,

Here is an example from Olsen's post

magnesium orotate 200mgm/day
magnesium glycinate 200mgm/day
DHA 200mg/day
Vitamins and Supplements:
ascorbyl palmitate ~ 4X/week
Vitamin B1 (benfotiamine) every day
Vitamin B 2 every day


thanks
Girija