Hi--looking for those interested in PD and alternative treatments
 

Hi All,

My husband was diagnosed with Parkinsons 3+ years ago, just shy of 50 years of age. He is on a low level of PD medications, Low Dose Naltrexone, plus a bunch of supplements. We are always interested in learning about supplements or medications that may have neuroprotective qualities rather than just treating the symptoms.

We have an organic dairy farm in Central New York State but were conventional for many years when my husband was exposed to some pesticide sprays over the years. He also was hit on the head by a falling tree branch several years ago that didn't knock him out but did require several stitches to close the gap left by the blow. I mention both of these as they have been cited as possible causitive factors in PD.

I have copied over Kathie's post from the New Members Forum to here

again, welcome Kathie :)

Anybody around here into that alternative stuff?
 

:D
Welcome, Kathie. If you click on my name and find your way to threads I started you will get my joke.

One thing, you mentioned the farm. Organic is great but there is a very real danger hidden in agricultural dust - especially hay and grain. Search the forum for "endotoxins".

Glad to have you.
Rick

Wecome Kathie..How long has your husband been taking LDN, and is he getting results?

Welcome Kathie
 

Welcome Kathie,
I too have been taking LDN or low dose naltrexone now for 34 months. I also take a low amount of PD meds, Sinemet and Mirapex. My neuro suggested I also take 1600 mg of coenzyme Q10 about 1.5 years ago. I began at 400 mg and she again told me to take more this Jan. I now take 800 mg of Q10 from Puritan's Pride. The LDN and Q10 are quite expensive but if you look at the per day cost, maybe not, assuming they do any good. I also take Magnesium and was taking turmercic (curcumin) but the neuro said to stop turmeric because it's toxic (I don't think it is). When I saw her last Jan, she said I had not progressed. It's hard too tell but I don't seem to be getting worse yet. Like your husband, I've been dx with PD for about 2.5 years now (it was MS before that). So I'm not sure what to expect, is the Sinemet masking the the PD while the disease is really progressing or is the LDN or Q10 stopping it in its tracks. I don't know.
It's nice to see another LDNer here. Ashley

PD, agriculture & alternative treatments
 

Hi Kathy,
Coincidentally, I too am married to a farmer in UK. :) When we married (1971) & for 4 yrs prior I was exposed to organo-phosphates (sheep dip, pesticides etc) & so was my husband. The difference being that his exposure was progressive over time being brought up on the farm whereas I come from a city (Manchester) & got most of mine in large doses over a short time. DEFRA, the government body i/c UK rural affairs, has aknowledged that my PD is likely to have been caused by this - there is no family history. As it happens I am voluntary coordinator for Farmers' Markets which major on organic food.
I tried alternative treatments for 2 yrs & now have found a happy medium between conventional & complementary. I recommend 5 Element Chinese Acupuncture from my own experience & medical acupuncture for pain relief. They don't suit everyone - you have to be receptive.
Angela.:)

Hello
I write this reply just as I started on ayurvedic treatment for PD. The therapy starts with a 3 week intensive treatment with ayurvedic oil massage nd herbal medication and this is my second day.
a
I have been searching for an ayurvedic place for a while and found this place in South India. I spoke to several PD patients who were/are being treated here. In some cases progression had slowed down, a few got better. that gave me hope!

Rick, you may remember me, How are you? I know Ibby and a few others are interested in this, Send me a message if you are interested in this type of treatment, I will provide details

thanks for all the replies
 

I'm not in the habit of using forums so I have not checked this since posting a couple days ago. I appreciate all the replies and will try to respond to many of the posts.

Rick has been on 4.5 mg of LDN for 2 years and when he first went on, he was able to go from two sinement a day down to one with no loss of function so we felt it had some symptomatic relief for him. He recently has now gone up to 2 sinemet a day (along with 5mg of selegeline that he has been on for some time) after he did a trial of rasageline. In order to go on that, his neuro said to drop the selegeline for 2 weeks then go on the rasageline. Well, the rasageline never really seemed to work for him (tried it for 6 weeks) so he went back to the selegeline with the sinement. However, then it seemed he need 2 sinemet a day and also noticed that now he was really experiencing being on and off with the sinemt.

Its hard to know if the LDN is working but it seems to be helping. I'd say he has definitly had less progression over the last two years while on LDN than he did the first year and a half without it.

Right from the start, he has been on Co-Q10. We also started going to a naturopathic physician early on and he started taking numerous supplements and did 11 sessions of IV chelation therapy plus oral chelation. That did reduce his levels of heavy metals. He takes numerous supplements including fish oil; muti-vitamins and minerals; a dopamine support supplement called balance D from Neuro Sciences; a "Mitochonrial energy optimizer" from LE that contains acetyl-l-carnitine, rhodiola, R-lipoic acid, etc; cucurmin; melatonin; milk thistle; etc. Even before he started the PD meds, we saw a lessening of some symptoms (swallowing difficulty, muscle cramps, slight drooling) from these treatments. Also, he was able to go off his blood pressure medication that he had been on for about 10 years and his BP has stayed just fine without it.

He also has done some accupuncture and does chiropractic.

I see in another thread, discussion of loss of smell. Rick lost had lost his smell by 23 years ago, when our daughter was born. I thought perhaps he was purposely trying to avoid his fatherly duty to share in the diaper changing work, but by that time he really couldn't smell the dirty diapers. That was when we first realized that his sense of smell, which had been better than mine 5 years earlier when we were married, was now pretty much gone. Another 20 years passed til he was diagnosed with PD.

As far as the farming exposures, Rick was exposed to insecticides in years past as he was the main person who would spray the cows with fly spray (including some organo-phosphates) before we were organic. He also certainly could have been exposed to hay and grain dust, although that exposure has been minimal in the last almost 20 years as we now use little dry hay or dry grain that he would be exposed to.

tx
 

Welcome Kathie!

Thank you so much for all of the interesting information!

I live in a farming area where crop dusters fly over all the time.
I am also a teacher, which I hear is another big risk factor for
pd.

I am 47 years old. I will have been diagnosed 2 years this June.
(What a horrible experience that was!)

I wish you and your husband the best! It sounds like you are
taking great care of him!! He is so blessed to have a spouse
like you that is actively interested in his care!!

LOL,

Mary Frances