How did your PD progress?

imark3000 · 12-28-2010, 03:35 PM

and inspiring. thank you.
Imad

Quote:

Originally Posted by EnglishCountryDancer

Although my husband was diagnosed in his early 60s, so is not Young Onset, I am writing to reinforce the view that in some people although Parkinson's is present, it does not show all of itself, for decades before diagnosis. Secondly,to mention exercise.
Perhap thirty years ago,perhaps even longer, my husband developed a tremor in his right(Parky side)foot if annoyed or excited. This was identical to the tremor he now has in a more pronounced form in his hand and foot. There have been other small episodes over the years,which we now realise were probably Parkinson's related. In his teens he was a runner,dropping it in his twenties only, to start marathon running in his thirties.This meant serious training and he would often run 60 miles a week.Achilles tendon trouble plagued him and it was after a lay off from serious running that the hand tremor became obvious:starting first whilst running. He did not think much about it and then then it became more pronounced,being quickly followed by a dragging foot.This was put down to a running injury.Then,without us really noticing the masked face appeared,and the slowness.
Now,my theory is that my husband would have shown the full symptoms of Parkinson's much,much earlier if he had not been a serious runner.We are now five and half years since diagnosis and about seven years since we began to suspect Parkinson's. Despite medication:18 mg RequipXL plus Madopar100/25,three times a day the tremor is pronounced, but he still runs and on a visit to London last week he was walking up the stairs, whilst the young and fit were using the moving staircase.He stills continues his hobbies and plays the melodeon and Morris Dances. Perhaps, not as well as before Parkinson's but still better than many. We still have long haul holidays and on one of these. I asked him to rate his quality of life out of 10 and he said "Ten" So do not despair there is a good life for many years after diagnosis and by the time things become difficult, a cure may well be within touching distance.........BUT do remember the importance of exercise and a positive attitude. Keep an eye open for the non motor symptoms especially depression,which is often part of Parkinson's so be on the look out for it to get it treated early. I just hope this little report emphasises the importance of exercise.Every little bit counts.

Ronhutton · 12-29-2010, 04:28 AM

I was diagnosed 20 years ago at the age of 54.
(Paula, I have never said "had it up to 25 years before a motor symptom appears".)
My PD has developed slowly, my symptoms were very mild, cogwheel rigidity in my arms, dragging left foot, tremor when I got annoyed with a bad driver.
It was mild enough to continue my very stressful job for 5 years after diagnosis. I was in charge of a large chemical factory making the same explosive chemicals that the London bombers used.(organic peroxides). I retired at the age of 60 in 1997. not because of PD, I had always planned to retire at 60.
I did not study the disease much in the early stages, it was so mild. During my subsequent retirement, we were able to travel the world.
After about 10 years from diagnosis, the symptoms were starting to get more bothersome, and by then I had increased my sinermet from 150mg per day to 800mg. I started to study the disease and experiment. I think my decision to take 1,000mg curcumin per day from about 12 years from Dx, slowed progression considerably. My symptoms were still mld enough to continue demanding holidays right up to last year. such as 40 hours total flying time to Tahiti and back.
In the last few years, I have had helicobacter Pilori erradicated, and have taken care to avoid constipation by taking a fibre supplement and a polyethylene glycol lubricant. I continued to maintain a half acre garden for exercise. I take Manuka honey to avoid infection and fish oil also.
During this period, I was able to reduce my Sinemet steadily to only 150 mg per day. I also take Azilect, (1mg) Mirapex (1.4mg) and trihexyphenidyl
(4 mg) daily.
My major problem at the current stage is dyskinesia (uncontrolled movement. It means I have to go to the dentist or barber totally unmedicated.
Possible causes for my PD are
1. I started my career as a research chemist and made and handled some very toxic products, such as very unstable organomercury products, toxic anti fungicides such as organoarsenic products.
2. I have always had a very stressful job. Before I ran the chemical factory, I was in charge of 3 research centres 2 in the UK and one inthe USA..
3. In my younger days, I suffered from constipation.
4. I had been infected with helicobacter pilori.
What has slowed progression?
I suspect long term use of curcumin has had a major effect, and erradication of helicobcter P. avoidance of constipation have all contributed.
Unmedicated, I can still shower and dress myself, and as I mentioned, I can go to the dentist unmedicated. At 20 years my main problems are difficulty walking and dyskinesia.
Ron

paula_w · 12-29-2010, 11:55 AM

Quote:

Originally Posted by Ronhutton

I was diagnosed 20 years ago at the age of 54.
(Paula, I have never said "had it up to 25 years before a motor symptom appears".)
My PD has developed slowly, my symptoms were very mild, cogwheel rigidity in my arms, dragging left foot, tremor when I got annoyed with a bad driver.
It was mild enough to continue my very stressful job for 5 years after diagnosis. I was in charge of a large chemical factory making the same explosive chemicals that the London bombers used.(organic peroxides). I retired at the age of 60 in 1997. not because of PD, I had always planned to retire at 60.
I did not study the disease much in the early stages, it was so mild. During my subsequent retirement, we were able to travel the world.
After about 10 years from diagnosis, the symptoms were starting to get more bothersome, and by then I had increased my sinermet from 150mg per day to 800mg. I started to study the disease and experiment. I think my decision to take 1,000mg curcumin per day from about 12 years from Dx, slowed progression considerably. My symptoms were still mld enough to continue demanding holidays right up to last year. such as 40 hours total flying time to Tahiti and back.
In the last few years, I have had helicobacter Pilori erradicated, and have taken care to avoid constipation by taking a fibre supplement and a polyethylene glycol lubricant. I continued to maintain a half acre garden for exercise. I take Manuka honey to avoid infection and fish oil also.
During this period, I was able to reduce my Sinemet steadily to only 150 mg per day. I also take Azilect, (1mg) Mirapex (1.4mg) and trihexyphenidyl
(4 mg) daily.
My major problem at the current stage is dyskinesia (uncontrolled movement. It means I have to go to the dentist or barber totally unmedicated.
Possible causes for my PD are
1. I started my career as a research chemist and made and handled some very toxic products, such as very unstable organomercury products, toxic anti fungicides such as organoarsenic products.
2. I have always had a very stressful job. Before I ran the chemical factory, I was in charge of 3 research centres 2 in the UK and one inthe USA..
3. In my younger days, I suffered from constipation.
4. I had been infected with helicobacter pilori.
What has slowed progression?
I suspect long term use of curcumin has had a major effect, and erradication of helicobcter P. avoidance of constipation have all contributed.
Unmedicated, I can still shower and dress myself, and as I mentioned, I can go to the dentist unmedicated. At 20 years my main problems are difficulty walking and dyskinesia.
Ron

sorry Ron, your linked article to Cure pD says symptoms can occur from 10 to 20 years pre-motor; didn't mean to imply you had that. Don' t recall where i got 25.

http://www.cureparkinsons.org.uk/cli...%20in%20PD.pdf

paula

lurkingforacure · 12-30-2010, 10:11 AM

Quote:

Originally Posted by Ronhutton

I was diagnosed 20 years ago at the age of 54.
(Paula, I have never said "had it up to 25 years before a motor symptom appears".)
My PD has developed slowly, my symptoms were very mild, cogwheel rigidity in my arms, dragging left foot, tremor when I got annoyed with a bad driver.
It was mild enough to continue my very stressful job for 5 years after diagnosis. I was in charge of a large chemical factory making the same explosive chemicals that the London bombers used.(organic peroxides). I retired at the age of 60 in 1997. not because of PD, I had always planned to retire at 60.
I did not study the disease much in the early stages, it was so mild. During my subsequent retirement, we were able to travel the world.
After about 10 years from diagnosis, the symptoms were starting to get more bothersome, and by then I had increased my sinermet from 150mg per day to 800mg. I started to study the disease and experiment. I think my decision to take 1,000mg curcumin per day from about 12 years from Dx, slowed progression considerably. My symptoms were still mld enough to continue demanding holidays right up to last year. such as 40 hours total flying time to Tahiti and back.
In the last few years, I have had helicobacter Pilori erradicated, and have taken care to avoid constipation by taking a fibre supplement and a polyethylene glycol lubricant. I continued to maintain a half acre garden for exercise. I take Manuka honey to avoid infection and fish oil also.
During this period, I was able to reduce my Sinemet steadily to only 150 mg per day. I also take Azilect, (1mg) Mirapex (1.4mg) and trihexyphenidyl
(4 mg) daily.
My major problem at the current stage is dyskinesia (uncontrolled movement. It means I have to go to the dentist or barber totally unmedicated.
Possible causes for my PD are
1. I started my career as a research chemist and made and handled some very toxic products, such as very unstable organomercury products, toxic anti fungicides such as organoarsenic products.
2. I have always had a very stressful job. Before I ran the chemical factory, I was in charge of 3 research centres 2 in the UK and one inthe USA..
3. In my younger days, I suffered from constipation.
4. I had been infected with helicobacter pilori.
What has slowed progression?
I suspect long term use of curcumin has had a major effect, and erradication of helicobcter P. avoidance of constipation have all contributed.
Unmedicated, I can still shower and dress myself, and as I mentioned, I can go to the dentist unmedicated. At 20 years my main problems are difficulty walking and dyskinesia.
Ron

Thank you for sharing all of that Ron, I have never heard of that last drug, trihexyphenidyl. What side effects do you experience with it? I looked it up and some of them can be nasty, yet it has quite a high efficacy. I don't know why none of the PD experts we have seen have never mentioned it.

Do you not take dextromethorphan also? I thought that was one you took each evening.

Thanks again, sure sounds like this is working very well for you. It almost sounds like you do not really have PD, whatever that is (what they say it is)!

Ronhutton · 12-30-2010, 12:38 PM

Hi Lurking,
Trihexyphenidyl (THPD) is an anticholinergic. You are probably aware that Dopamine and acetyl choline have to be kept in balance. So since our ability to produce dodamine is nearly totally gone, this delicate balance has been disrupted. The only way that can be achieved is to reduce the acetyl choline, for which we take trihexyphenidyl. When we take a cocktail of other drugs, it is difficult to assign any side effects to THPD.
I have not heard of dextromethorphan, so don't take it. You may be thinking of CPD choline or citicoline, which I used to take. I have had to get it from IHerb in the USA and gave up . I think it is quite a good sdupplement since it aids brain metabolism, and is used by doctors to aid recovery after a stroke.
Ron

lurkingforacure · 12-30-2010, 04:54 PM

Quote:

Originally Posted by Ronhutton

Hi Lurking,
Trihexyphenidyl (THPD) is an anticholinergic. You are probably aware that Dopamine and acetyl choline have to be kept in balance. So since our ability to produce dodamine is nearly totally gone, this delicate balance has been disrupted. The only way that can be achieved is to reduce the acetyl choline, for which we take trihexyphenidyl. When we take a cocktail of other drugs, it is difficult to assign any side effects to THPD.
I have not heard of dextromethorphan, so don't take it. You may be thinking of CPD choline or citicoline, which I used to take. I have had to get it from IHerb in the USA and gave up . I think it is quite a good sdupplement since it aids brain metabolism, and is used by doctors to aid recovery after a stroke.
Ron

Dextromethorphan is the active ingredient in Benadryl, which many here take nightly in lieu of LDN.

YogaHealth · 01-02-2011, 11:13 AM

Quote:

Originally Posted by lurkingforacure

Dextromethorphan is the active ingredient in Benadryl, which many here take nightly in lieu of LDN.

Actually, Dextromethorphan is used as a cough suppressant and usually seen in Robitussion DXM. It can have a bad interaction with MAOB inhibitors such as Azilect. The active ingredient in Benadryl is Diphenhydramine.

I'm a nurse... It comes with the territory

rdbuluran · 01-25-2011, 08:03 PM

Quote:

Originally Posted by Ronhutton

I was diagnosed 20 years ago at the age of 54.
(Paula, I have never said "had it up to 25 years before a motor symptom appears".)
My PD has developed slowly, my symptoms were very mild, cogwheel rigidity in my arms, dragging left foot, tremor when I got annoyed with a bad driver.
It was mild enough to continue my very stressful job for 5 years after diagnosis. I was in charge of a large chemical factory making the same explosive chemicals that the London bombers used.(organic peroxides). I retired at the age of 60 in 1997. not because of PD, I had always planned to retire at 60.
I did not study the disease much in the early stages, it was so mild. During my subsequent retirement, we were able to travel the world.
After about 10 years from diagnosis, the symptoms were starting to get more bothersome, and by then I had increased my sinermet from 150mg per day to 800mg. I started to study the disease and experiment. I think my decision to take 1,000mg curcumin per day from about 12 years from Dx, slowed progression considerably. My symptoms were still mld enough to continue demanding holidays right up to last year. such as 40 hours total flying time to Tahiti and back.
In the last few years, I have had helicobacter Pilori erradicated, and have taken care to avoid constipation by taking a fibre supplement and a polyethylene glycol lubricant. I continued to maintain a half acre garden for exercise. I take Manuka honey to avoid infection and fish oil also.
During this period, I was able to reduce my Sinemet steadily to only 150 mg per day. I also take Azilect, (1mg) Mirapex (1.4mg) and trihexyphenidyl
(4 mg) daily.
My major problem at the current stage is dyskinesia (uncontrolled movement. It means I have to go to the dentist or barber totally unmedicated.
Possible causes for my PD are
1. I started my career as a research chemist and made and handled some very toxic products, such as very unstable organomercury products, toxic anti fungicides such as organoarsenic products.
2. I have always had a very stressful job. Before I ran the chemical factory, I was in charge of 3 research centres 2 in the UK and one inthe USA..
3. In my younger days, I suffered from constipation.
4. I had been infected with helicobacter pilori.
What has slowed progression?
I suspect long term use of curcumin has had a major effect, and erradication of helicobcter P. avoidance of constipation have all contributed.
Unmedicated, I can still shower and dress myself, and as I mentioned, I can go to the dentist unmedicated. At 20 years my main problems are difficulty walking and dyskinesia.
Ron

Hi Ron,

Can I take tumeric instead of curmerin ? And how much ? Right now, Im taking Prolopa 50/12.5 mg.

Thanks for your post!!'

Ronaldo

Ronhutton · 01-26-2011, 03:07 AM

Hi Ronaldo,
Yes you can take Tumeric instead of curcumin. Tumeric is less concentrated than pure curcumin which is obtained from it. I have not taken Tumeric myself, so I can't remember the % curcumin. You will soon find it in a search.
Ron

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