Young PD

[jt12]

Was just diagnosed about 2 months ago at age 49, still trying to come to terms with it, but my attitude is positive because that's the only way I can deal with it. I'm glad though that I finally have a diagnosis for all the symptoms that I've dealt with for the past 15+ years. So glad there's a group for us younger ones.

[laglag]

I was diagnosed 14 yrs ago at 46 and am still doing fairly well. My belief is you first need to Accept it and then take Action, the sooner the better. Research, research, research (nutrition, supplements & meds). And exercise, exercise, exercise. Sounds like you're well on your way to doing all that. Keep fighting and knock the heck out of Parkie before he knocks you down! And keep your positive attitude, that helps more than you can imagine.

[Bailey_Texas]

The one thing i do during the day is to keep busy. If i am busy working around the house i do not notice the down time which comes every 4 hours or so. After 12 years i am donig great.

You must find what works for you.

[alexask]

You are not really that young. If you lived in the middle ages or in parts of Africa today - you would likely be long dead at 49!

I haven't been diagnosed yet. I am 47.

However my symptoms are/were :

Lack of sleep (waking up an hour after getting to bed), lurid dreams, deteriorating handwriting, slowness of typing, orthostatic hypertension, dizziness, constipation , grumpy face and the beginnings of a tremor. I was also pretty depressed given all of these symptoms and the uncertain future I thought I was facing.

I have managed to control/reverse most of these through primarily exercise (cycling, running, shadow boxing, dancing) , Mannitol, curcurmin (with pepper) and coconut oil.

Stop eating fast carbs (sugar, bread, potatoes) also helps.

[Sleeplessparki]

Welcome to the club. I'm the class of 2010 at age 59 and 7 years in I'm still hanging on to an active life. I do show signs of deterioration but I keep a positive attitude and never get depressed as there are a lot of other things that are worse! Like my friend Fern he is paralyzed from the neck down. Exercise and keep things in perspective and you will manage through this set back and live a fulfilling life. Well that's my take on dealing with PD.

All the best Mark

[tommybigt]

you should go on take a look on the parkinsons site. 49 year old s story might help 7 years diagnosed . parkinsons.org.uk/forum/thr...

the heading is POSSIBLE DRUG INDUCED PARKINSONISM.

GOOD ENDING FOR THE 49 YEAROLD

[Hidden]

Hi

I was relieved when I was diagnosed eight years ago at the age of 52, as like you I knew something was wrong for several years before getting my diagnosis. I did hold off starting Madopar (Levodopa) because of the treatment benefit time being an unknown quantity (we are all different), used Trihexyphenidyl for six years, which gave me my arm swing back and lessened the stinging sensation. Exercise is absolutely essential, I went to a Parkinson Therapy Centre for ReGen Therapy in Italy, it changed my relationship with my Disease for the good.

A positive attitude is I find like you is the only way to go, Parkinson it is part of who I am but it is not the whole. My husband is my rock, sometimes I can be a bit of a horror but he still stands with me holding my hand. I have lost a sister and a couple of friends who cannot cope with my diagnosis, that is their problem not mine.

I am glad you have access to a younger support group it is very important to not feel alone.

We don't live in the Middle Ages so I definitely felt young at 52, however, there are some very young people receiving this diagnosis, their lives full of plans and responsibilities, it is tough.

I wish you well with your PD journey.

[Jamielee1]

Hi I'm 37. Was diagnosed last year and have felt symptoms 1-2 years prior. I'm sorry. It really sucks.

[k100 in reply to Jamielee1]

How do you cope at 37?

[Jamielee1 in reply to k100]

I take it day by day. I think I'm in denial about it so in a way, I'm not really coping. I haven't progressed really until recently. My foot drags a little and when I'm really stressed or tired I get a slight limp. This is a brand new thing. If I work out and eat healthy, it goes away. Even with this new stuff, I'm somehow in a denial state. My husband is amazingly supportive but he travels a lot for work and when he's gone I can get depressed. I've always been pretty social and have a big group of friends but I can't bring myself to tell anyone. Only a couple friends and my parent/parent in laws know. I haven't even told my personal trainer. He obviously knows there's an issue but he is letting me decide when to tell. The thing is, I can't talk about it without crying so I'd rather not. And I kinda think if I don't talk about it, it may magically go away. I also have a 3&5 yr old. I worry how they will react when the day comes that I have to explain. I worry that they will get teased at school. My husband is my rock. Unfortunately he is not in optimal health either. Last year when I was diagnosed, he was told in the same week that he needed to have his colon removed. Hes 6 months younger that me. He is also my only source of income. We do well, but not having financial control is very scary. Especially at my age. I'm mostly afraid of him dying first, my kids moving on w their lives and me being alone. The day I was diagnosed was the day any future I had died. So basically I live with fears. Yet to everyone else that knows me, I am still the pretty, funny and always happy girl that I've always been. They all think I live a perfect life and comment on how inspiring I am with my calming soul and peaceful energy. How will people take it when they find out that I'm basically living a lie? I'm scared shitless of losing everyone and being alone. Sorry so long-winded. No ones ever asked me anything about my PD before.

[laglag in reply to Jamielee1]

It really helps me to talk about it. It lets me release emotions that shouldn't be held in, ones that cause stress. Friends & family will be more understanding than you think. They'll eventually figure something is wrong & wouldn't it be better for them to know what's really wrong? Just think about it. You can't change it so you might as well make the best of it. In the meantime, you can talk to us. Good luck!

[Hidden]

It does really suck, especially when you are in the prime of your life. We have no choice but to get on with it, the alternative is too depressing to contemplate.

[pingopenguin]

YOPD Conference Leicester April 2020

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