Needing to get involved...: I have a blog... - Cure Parkinson's

Cure Parkinson's

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Needing to get involved...

Parkie35 profile image
12 Replies

I have a blog on word press, it helps me get my feelings out. I really love to write and do not get much time anymore to do so.

I am 35 (almost 36) dx with Parkinson's in July. For the last few months I had been doing really well. The amatadine was working really well for me especially for the fatigue. I changed my diet DRASTICALLY and was doing best I had all year. Then the last couple weeks flare ups are back and I'm not too happy... stress really makes things worse but it's not the only issue. :)

Being involved with the PD community needs to happen, for support - for myself and others as well.

Thanks for reading and looking forward to meeting you all.

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Parkie35 profile image
Parkie35
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12 Replies
jazzfan53 profile image
jazzfan53

Is amantadine the only med you are taking right now? Just curious...Looking back did you have all these odd symptoms a few years prior to your diagnosis? It wasn't until I suddenly developed tremor in my left arm that I realized something was seriously wrong - I ignored all the other sympoms. I was diagnosed at age 49 in 2003. Are you in a city in Montana or out in the countryside? It can be difficult for people who feel isolated in a rural environment. Anyway, welcome to the group, I just joined a few months ago.

Parkie35 profile image
Parkie35 in reply tojazzfan53

I would say I had symptoms probably about a year before dx. And the crazy tremors finally sent me to the doc. I am only on the amatadine at the moment. I need to be adjusted though. Was on azilect but after latest research I decided not to take anymore. Helena is the capital but sure isn't big and doesn't have much! Lol thanks for the post. :)

Dennis profile image
Dennis in reply toParkie35

Please let me know about Azilect? I was taking it until the cost was $300 per rx. Dennis

KokoLu profile image
KokoLu in reply toParkie35

Parkie35, culd yuo tell us some of yours experiances, with doctors, what simproms did yuo have, did doctors immidiatelly suspected on PD? How did yuo feel when they told you that yuo have Parkinson? Do yuo still work or yuo quit? Sorry for so many questions, bat I suspect that I have PD, but my neurologist said: No way, you are 35 years old. My tremor is not always here and it is not very strong.

compucure profile image
compucure

Yep stress is a killer is it not! I have just recently changed my diet - what did you change with your diet? Welcome to the group! Tony

Improving my diet {and exercise} was a tremendous help for me also.

Avoiding the stress that can be avoided, is helpful.

Captsteve profile image
Captsteve

writing or blogging is a therapy of sorts.for me also. Even if my grammar sucks. It helps with the stress!

Welcome... I also radically changed my diet and reaped major results = whole foods, organic when possible, no fast foods, no processed foods, NO MICROWAVED foods. it really helps.

NMelody profile image
NMelody

Welcome! In all of the work I have done (my dad is a person with PD) one of the most rewarding was going to Washington DC last year with PAN. I met SO many absolutely wonderful people and spoke to legislators on behave of the PD community.

One of my dad's activities to keep himself moving is working out. It keeps him in shape and his doctor even said it is what has kept him from progressing farther downhill. He walks and works out with my sister at the gym. My friend Michael rides a bike and loves it! Be sure to find things to keep you busy.

Keep writing-as we all know the cathartic benefits of opening up!

Nikki

I am from a small town and it is hard to find people to talk about this stuff. If you do talk about it you run the risk of driving people away. No one wants to be in the store and ask someone how they are and then sit there for the next 15 min. listening to their ills. So it's nice to have groups like this.

ram927 profile image
ram927

I am also new and it helps to talk and listen to others. I'm 67 and had dz in 07 Worked as a NPS ranger and still am trying to with help from friends But get involved and execise Daughter started ba golf tourney (now into it 4 year) and I am going to try to put togeater a Parkinson Awarenwss hike at the Grand Canyon where I worked for 8 years. IT will be a big job but what better place then the GC to make things noticable. Juat came up with that idea so verymuch in the planning stage but hope to have something by September by the way which the GC is very lovely that the of the year Hope to have more in the future Keep in touch and keep active

SteveSlattery profile image
SteveSlattery

Welcome to the blog...it also strikes me as immesurably helpful for me to have a place to both vent and to help others.

I look forward to contunuing this in the new year!! A happy holiday to you all!

Steve

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