Hi John,
I appreciate your interest although it is somewhat embarrassing as well.
To be honest I am not certain what has worked for me and what hasn't- I am trying to base a lot of my decisions on information and instinct.
I like to tell myself that I have had some control over the progression of this PD even though I can't say that for certain. I think this belief has probably helped me as much as anything else has.
Like many of us here, I have tried many approaches. I was diagnosed at 44 and tried a macrobiotic diet for almost 2 years, early on. I have an infra-red sauna that I have used for years, I have done Qi-gong, meditated, changed my attitude towards almost everything and focusing what I consider to be the fundamentals, ate herbs and supplements by the bushel (and still do).
I never could handle the agonists although I did a trial of both requip
and mirapex. They both made me so sleepy that the quality of life I would have to have made them unusable for me at the time. The only other prescription medication that I have taken, and for all 16 years is Selegiline (10mg). I also use caffeine (one or two cups of coffee) and green tea for energy and to stay alert. The selegeline has helped me dramatically with depression. There is none.
I have a three wheeled bike that I love to exercise on- it feels so great to fly along on it with speed! Walking has become more difficult the last 9 months or so, I have lost a lot of strength in my lower body although upper body is still good.
I do push myself physically still though and recently traveled to the
Dominican Republic and stood in lines at customs and security and walked in the sand on the beach for maybe 3/4 mile. Nothing like the distances you are walking, however. I do think the ibuprofen, by keeping the inflammation and pain down, has allowed me to remain as physically active as I am.
I don't know if any of these specifics are helpful but what I would tell anyone is just to try everything that resonates with you (obviously- not all at once!)
and hope for the cure to come in our lifetimes.
I guess while I am at it I want to include another aspect of dealing with Parkinsons that has been essential for me. I have found myself, through whittling down my life to the basics, feeling so grateful for what I have in terms of relationships and ability to enjoy the beauty, life, and pleasures around me. It feels like this has come easily. Some people aim and struggle for this their whole life, and to me it has come easily. I feel really blessed for this.
Quote:
Originally Posted by johnt
VICTORIALOU,
I like your approach: do due diligence, take full resposibility for your own actions.
Reading your post the following details jumped out of the page: 16 years post DX, workload, 400 mg / day levodopa.
Whether it's the ibuprofen or not I have no idea, but you appear to be doing something right.
Please forgive me if I ask a few questions, but I'd like to get a better idea of your apparently slow rate of progression.
Do you take agonists as well?
At what age were you diagnosed?
What's the furthest you've walked in a day in the last year?
(As a comparison, I'm nearly 8 years post diagnosis, unable to work, 300 mg levodopa plus 16 mg ropinirole per day, diagnosed at 49, 10 miles in a day [my lower body is less affected than my upper body]).
Talking generally, this experience goes to show the need for good progression stats, so we can make comparisons. It also shows the need to aggregate experiences; between us, are there 5 good experiences of ibuprofen or 1 good experience and 5 bad?
John
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