I recently sent this email to someone newly diagnosed with PD.

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I was 51 when diagnosed in January 2003. I had a tremor in one finger, did not swing my left arm when I walked, and lost my sense of smell 20 years before. When an MRI came up clear (no tumor) I got the diagnosis of parkinson’s.

I went through months of angst and denial – but the diagnosis was correct (unfortunately). But you can help yourself. This does NOT have to be as terrible as you fear. Here are some things I’ve learned in dealing with this disease, and for your health – I recommend you start them now:

There is a lot of evidence that EXERCISE can help – so an overweight couch potato like me now walks, swims and bikes (nearly) every day. Do anything – everything you can do starting NOW: yoga, tai chi, weight training, walk, treadmill, bike, etc etc – every day – do as much as you can and start now. While there is nothing proven to slow the progression, exercise may help, plus there are supplements and foods that have shown that they may help (eat/take them now):

• Dark berries (blueberries, blackberries, raspberies, etc)
• Dark grape juice
• Curcumin supplements (an ingredient of curry) has shown to be very good for the brain
• Coenzyme Q10 in mega doses may slow the progression – try to take 1200mg per day
• Eat broccoli (!)

IF you get a PD diagnosis, the NIH is looking for people with early PD – not on PD medication yet. Whatever the diagnosis – do NOT let doctors start you on pd medications until you think about clinical trials. There are trials going on right now for substances that may be neuroprotective. (I have participated in 5 trials so far…)


www.pdtrials.org
www.clinicaltrials.gov

here is a bulletin board for people with pd –http://neurotalk.psychcentral.com/forumdisplay.php?f=34

..sorry I have only just seen this but how valuable it is.A great comfort to newly diagnosed and so true.I refused medication for a good length of time and managed very well.It was emotional stress really that brought the symptoms on more rapidly thus causing me to finally accept medication but for those who can hold off the meds for as long as is safely possible I would say...GO FOR IT!!!

steff

Thank you Jean

x

Too bad the neuros and PD specialist don't tell you all of this!!
The first thing that they want to do is put you on meds.

Thanks for this!!

Mary

I know I know ... I agree!!

we need to train those neurologists!!!

lol, Jean

I don't think there's much hope in re-training the neuro's, so we have to take control of our situation and do the best we can with what we've got.

Diet and exercise are both hugely important, but so hard for people to commit to and follow-through with. Do anything, something, each and every day. You literally have to start small and work your way up and eventually you'll get there. Too many people try to do too much at once, then end up getting discouraged and quitting. Most importantly, if you're going to exercise, find something to do that doesn't feel like "work" but instead feels more like "play." You'll be far more successful and happy that way.

We can do this!

Good advice, Todd

tx

Mary

Very good advice, Jean.
Thanks for this!

Mary

Mary & Todd,

In the coming months, I hope to get on schedule to talk to medical students about clinical trials.

Todd, I think you are right - it may be too late to change the minds of currrent neurologists, but if we - as PD Advocates - can gain an entree to talk to medical students about the importance of clinical trials, maybe we can make a difference in the future!

We have to try!!

Jean,

I'm with you about talking to medical students, although I lean more towards what it's like to live with PD as opposed to clinical trials, but I will certainly add that part in.

Most docs undergo a tremendous amount of training but seem to miss out on the "compassion, empathy, understanding" part of their education, so that's where I hope to come in and try to help in my own, small way.

And you're right, we have to do something, because even if we only reach a small percentage, that's still better than doing nothing!

Hope this new website is helpful to others:

www.pdplan4life.com/