Newly Diagnosed with PD
 

I am 36 years old and newly diagnosed with PD. I am completely overwhelmed with the diagnosis but also with all the information out there. Is there a good place to start?
I think I am in the denial phase because, well why and how? So, I think that is keeping me from digesting the information that I am finding...if that makes any sense.
I've already started meds which have helped so much. But I am having sleep issues. I don't know if they are coming from the stress, the meds or just the PD. I have 3 school age children that need their mom and I need a nap :)
Any advice is very much appreciated.

First of all I am so sorry to hear from a new member to our club. Be careful of what you read and how much credibility you give it. This forum has been an immeasurable help to myself and others. There are so many suggestions, advice and whatnot from many sources. Take what you can. There are many questions as well. .who diagnosed you? Do you have health coverage? Are you working? what is your support network of friends and family? Try to exercise and maintain what you have. If you are having a rough day it's okay to take a time out (don't overstress yourself) You will learn a lot about yourself over time, there is a lot happening in the realm of PD, just hang in there! Prayers going out to you and yours.

Jenren,

A few things I would add to Jim's thoughtful comments. One, getting to the right doctor makes a critical difference. In particular, a movement disorders specialist is typically best suited to treat PD patients...this is a specialty within neurology and worth seeking out if you haven't already seen one. (65% of PD never see a specialist---this effects care outcomes and even ultimately effects progress in research for new treatments).

You will surely continue to find useful resource suggestions from others here but I might offer the newly relaunched Michael J. Fox Foundation web site as one to explore? We worked to deepen the information for newly diagnosed patients as well as information about living with PD. From our homepage, go to Understanding Parkinson's and you can poke around there.

Finally, I know I'm biased but I would suggest you read one of Michael Fox's books (if not now...down the road). Patients and family members regularly comment to me that they find his brand of coping and optimism helpful. Lucky Man and Always Looking Up are both good reads.

Hope these suggestions help.

Debi Brooks
MJFF

Lots of online connections that will help
 

Jenren,


I am a mom too; I have a wonderful three year old boy. I have been symptomatic since my early thirties but hard to diagnose. My docs just observed me for four years.

There is some really good advice here. To add there is a YO forum at National Parkinson Foundation. It is a more warm fuzzies group where as here we are looking for answers and trying various natural therapies (based in research), so we mainly post info here - we are supportive here too just in a different way. The NPF also has great Ask the Doctor and Pharmacist forums.

I recently joined a very active group on FB for YOPD. FB also has a group there just for women with PD. You'll find it is quite different for us (thank you hormones). I have even met some people from these groups. There is nothing like meeting others who go through the same challenges as you.

You'll be in good company at any of these spots.

I know how devastating this all seems and you may slip in and out of denial. I think we all do it to an extent. I think the single most frustrating thing is the slow pace of research translation into the clinic and us. That being said, if there was a good time to be YO it is now. They know such much about the disease and there are really good treatments in research trials right now that look powerful enough to either stop the degeneration or at least slow it down.

Best advice is to get as much vigorous exercise as you can; meditate; avoid processed foods; socialize; and always see the silver lining.

Laura

Dear Jenren,

I would not welcome you as a newly dx patient as there is nothing to celebrate with. but i am sure you will find a lot of support and useful information here to help cope with PD.

I was dx 11 years ago at 36.

my 2 cents are

1. ensure you are correctly dx
2. prepare for the worst and hope for the best
3. be honest to yourself and caregivers - family
4 dont overestimate your capability and undersestimate PD
5 stay positive

LING

for sleep, i use 3mg melatonin once in awhile or a "natures way" product "silent night" with valerian, hops and skullcap. both work but i get vivid dreams with the latter. sleep is rarely a problem.

on pd, my philosophy is do whatever you have to to be healthy enough to qualify for a clinical trial of a potential cure/better treatment no matter when or where.
the worst thing about pd is you can just keep doing less and less because you don't want to risk over medicating and then you exercise less, exercise might prove to be a major factor in slowing progression.

don't get carried away with all the alt-med treatments found on the web.

if your neuro won't discuss options or doesn't seem up on new treatments, drugs, etc., find a new one. if something doesn't work after a few weeks, ask for some other options. i spent a year in a daze trying to get used to mirapex and finally switched to sinemet. everyone's pd is different.

join a support group. sign up for clinical trial alerts at MJFF, i became good friends with a neuro while participating in a trial, didn't hurt.