[lilvout]

Hi everyone
I have been diagnosed with young age early onset parkinsons, in 2008. As a mother and a wife I was wondering if anyone can give me a no nonsense portrait of what is going to happen to me. I know it is different for everyone the progression that is but I have been told the outcome is virtually the same for everyone.

[Shakerlady]

Hi, I just joined Neurotalk...I'm not familiar with how this website works yet. I have PD also, DX 'd at age 61 six years ago. I think it will depend on how well you take care of yourself. Exercise, according to those who do it, and I believe research is starting to back this up, is critical and even neuroprotective. Take some of the supplements mentioned on good PD websites. I would not worry about the outcome. Just try to live each day to the fullest, stay connected with your dear ones, get enough sleep, eat a diet rich in vegies and fruits, and go to a good neurologist, preferably a Movement Disorder Specialist. If your neurologist is a good one who prescribes the meds that are best for you and you do all of the above, you're likely to have slower progression (in my opinion). Handling stress better also protects the neurons in the brain. Prayer and the support of others have also been very important to me.

[Parkie]

Nice to meet you Lilvout, I'm Barb and I'm new here too. I have been diagnosed 7 years and I am better than I was when I was diagnosed. I would say that 95% of this is attitude. I found that the earlier that you "own" your condition and get comfortable with it, the better off you will be. Do I wish I didn't have pd? Hell yes. But the fact is I do. That is my reality, and you HAVE to live with your reality, I refuse to be embarrased or ashamed of it. Please don't waste your time worrying about how it will end, what if you got run over by a bus, look at the life you wasted. I've always believed that what you laugh at can't hurt you, and I have some funny funny stories about days when pd was running the show. As far as the outcome being the same for everyone, isn't that true for every one that is living now? Aren't we all going to die?? I hope you can make peace with it and live well
then, and only then, when its your time to go, concentrate on finishing well.

[Conductor71]

Originally Posted by lilvout

Hi everyone
I have been diagnosed with young age early onset parkinsons, in 2008. As a mother and a wife I was wondering if anyone can give me a no nonsense portrait of what is going to happen to me. I know it is different for everyone the progression that is but I have been told the outcome is virtually the same for everyone.

Welcome aboard! I am a mom to a young son (18 months) and have been diagnosed for two years now. I found out about the PD around the same time I discovered I was pregnant. No one can really chart your course, but I will say that you want to minimize stress and maximize exercise. These are two constants that we can somewhat control. Stress is known to make your symptoms worse (sometimes, as I can attest) permanently. Exercise can reduce your symptoms dramatically. The rest is all a toss up.

You will find a lot of research based information here on how to take charge in the limited way we can. Tons of good info here and plenty of lab rats willing to try out herbals, cough syrup, in other words, we try a lot of different things your doctor won't support, but at least it gives you some measure of control over things.

Laura

[soccertese]

Originally Posted by lilvout

Hi everyone
I have been diagnosed with young age early onset parkinsons, in 2008. As a mother and a wife I was wondering if anyone can give me a no nonsense portrait of what is going to happen to me. I know it is different for everyone the progression that is but I have been told the outcome is virtually the same for everyone.

i was diagnosed in 2001, didn't need meds until 2006. progression has become more rapid and am on 600-800 mg sinemet daily.
so i'm following the avg outcome imho. but there is much more hope for treatments that can slow the progression and treatments that may restore nerve function. so that "same" outcome may be changing.

my advice is stay on top of the current research on a daily basis, especially that concerning exercise and get set up for being alerted on any clinical trials that might involve slowing progression. stay informed.

[marciaj]

I was diagnosed in 2006 at age of 55. I'm not on medication yet. I don't post a lot but do read. Some days it's hard to believe that I actually got PD. In a large family only my cousin and I got it. I was always the one to take care of everyone else but now find myself asking for help from others. I don't know where it all will end. I just take one day at a time.

[sooty]

Hiya

I was dx just over 2 years ago at the age of 42,so i guess i'm a young one too.Married with 2 teenage sons..................................was on high dose of Mirra but it totally messed me up before i even realised ,any one else have ''side effects'' on DA's,,now of them and things slowly getting back to normal




sooty

[lindylanka]

Just wanted to say Hi and welcome - it's good to have you here.
There are loads of supportive and helpful people here, and
there is almost always someone who will respond is you
need information, or just plain ordinary help.

Lindy

[lurkingforacure]

Originally Posted by sooty

Hiya

I was dx just over 2 years ago at the age of 42,so i guess i'm a young one too.Married with 2 teenage sons..................................was on high dose of Mirra but it totally messed me up before i even realised ,any one else have ''side effects'' on DA's,,now of them and things slowly getting back to normal




sooty

I read your post to say you have gotten off mirapex, do you mind my asking how you did that? We have tried several times and it has been a disaster, and we had to go back. We have managed to reduce the dose down to 3mg a day from the 4.5mg we were on several years ago, but can't really go lower than that. Would love to hear your experience and anything you can share, thanks!

[Muireann]

My ten of the best treatments for PD:

1. Dopavite, available from Vitalogic
2. Sublingual B12, high dose, available from iherb.com
3. First cold pressed, organic Rapeseed oil, for essential fatty acids
4. A good multi-vitamin
5. A really good diet: plenty of protein, fresh fruit and veg, oatmeal for breakfast and no processed food [I can take the protein, essential to make your own dopamine, as I managed to get off all PD drugs], lots of water
6. Massage therapy
7. Acquafit
8. Tai Chi and Yoga
9. Cycling
10. Avoid doctors