I am Living (it up) with Parkinson's and ... - Cure Parkinson's

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I am Living (it up) with Parkinson's and Other Things

wordworks2001 profile image
19 Replies

Diagnosed with PD in 1998, probably inflicted with it for a couple years before that, I decided to make the most of the poker hand I had been dealt. Put on Mirapex early on, I soon became a compulsive gambler and after that became, divorced, fired, lost all my property but literally the clothes I was wearing or could carry. I was homeless for more than five years and a bout with suicidal ideations landed my in a Veteran's Hospital. One of the great physicians at the facility quickly realized my plight was more a result of bad medicine rather than the disease. Once I got off the Mirapex, I actually started to thrive.

I went through a Gambler's Addiction inpatient rehabilitation program, again courtesy of the VA. I met a lady and moved in with her, found a neurologist who was a magician at modifying my medication dosages. I was able to go back to work in West Africa for several years. When my PD symptoms again stopped me from being able to work, I got my own place in a small rural community. For four years, for spiritual growth reasons, not unhealthy feeling-sorry-for-myself ones, I lived the life of a hermit. I meditated five times a day and studied nature and metaphysical subjects almost every day. I also became a bird watcher and spent about 5 to 8 hours a day at the state park five minutes from my home.

In 2004, I had been diagnosed with Coronary Artery Disease and was strongly urged and coerced to have a five vessel coronary-artery-bypass-graft which I decided to refuse after receiving a second opinion from a noninvasive cardiologist. Subsequently, from 2004 to 2012, I was treated with medication for my CAD. In June of this year, I finally experienced a fairly major heart attack. Three days later, I underwent that CABG, only four vessels though. The recovery went extremely well

When I decided to end my four years of solitude, I decided to start dating again. So I trimmed the beard that grew down to below my nipple line in four years and had my head shaved. The only thing I missed about that was I lost the long pony tail that took me years to grow. But shortly after communicating with members of the opposite sex, I met the love of my life, Lori. We met in March and were wed August 31, 2011. Each of us say it was the best thing we ever did.

Lori and I are now travelling across the country, stopping along the way to see places we've never been to before, taking time not only to smell the roses but to watch them grow, bud and bloom. We will be doing this as long as my body allows us to. Right now we are in southern New Mexico and may be here several months, or leave next month. We go wherever the weather takes us.

Why am I writing this? I am letting you have just a small glimpse of what my life has been to let you know I would not change a thing that has happened to me before or after I was diagnosed with PD. Sure, I've been homeless, cold wet and hungry at times, lonely and yes, sometimes scared. But all of these experiences, deprivations, and traumatic situations have all served to make me stronger and better capable to react to whatever grief (I like to call it 'whatever challenge') comes my way.

My body has frequently not allowed me to do everything I wanted to do. But that has only served to teach me to do things I never thought I would every do. My heart has caused me pain, both physical and emotional, and it has almost killed me. But what doesn't kill me only makes me stronger.

Stay strong fellow Parkies. There is a big world out there to explore.

BTW, the beautiful young woman whose image accompanies this essay is my wife, Lori.

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wordworks2001
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19 Replies
Jenette profile image
Jenette

Thanks for sharing your inspirational story. You have a beautiful wife. I'm glad you are now able to enjoy and live life!

Can I ask what PD meds you take?

wordworks2001 profile image
wordworks2001 in reply to Jenette

Thanks Jenette, I am on 1mg Azilect in the morning, 200mg of Comtan twice a day and 25/100 of regular Sinimet three or four times a day. I also try to walk and do BIG therapy exercises every day.

Brooke profile image
Brooke in reply to wordworks2001

Great story. Doyou think the Big therapy is helpful? I took this therapy and have been a little lazy not doing it lately.BTW you are so blessed to have found Lori.

wordworks2001 profile image
wordworks2001 in reply to Brooke

Thanks Brooke. BIG Therapy changed my life. Before I took it, I was falling about 3-4 times a week. Also, if I get lazy and don't do my BIG exercises every day (there are seven of them), my balance suffers.Lori does help a lot. If she notices my gait is getting shorter when we are walking together, she tells me, "Think BIG."

honeycombe3 profile image
honeycombe3

CONGRATULATIONS!!! My glass is (usually) half full, so I enjoy drinking whatever's in it at the time. Best wishes, Angela

wordworks2001 profile image
wordworks2001 in reply to honeycombe3

Thanks Angela, same to you!

jillannf6 profile image
jillannf6

hi

a grea t story

lol jiLL

:-)

wordworks2001 profile image
wordworks2001 in reply to jillannf6

Thanks Jillian!

CJ49 profile image
CJ49

Congrats Wordworks! Your story is truly "inspirational!" Ever think about publishing an autobiography!?!

We hear about people looking at the cup "half full?"

I'd say your cup "Runeth Over!" :o)

wordworks2001 profile image
wordworks2001 in reply to CJ49

Thanks CJ. I have been told I should write a memoir and I may do that when I am ready to settle down. I have written one book. The title is The Ghosts of November. It was published in 1998 and I think it is still available on Amazon and maybe a couple of other book sellers. I tried to get a revised edition published in 2008 but couldn't find anyone to do it. I put the revision on a blog site. It's a little hard to read, starting at the back and all, but at least it is free. I will let everyone know if and when I do a memoir.

wordworks2001 profile image
wordworks2001 in reply to wordworks2001

BTW, the book can be read at novemberghosts.blogspot.com

CJ49 profile image
CJ49 in reply to wordworks2001

Thanks ever "so much!"

Blessings to you,

CJ

Court profile image
Court

Thanks for sharing your story, which is inspirational. It just goes to show that there can be light at the end of the tunnel. We just each have to follow our own paths. And fight.

wordworks2001 profile image
wordworks2001 in reply to Court

Thanks Court. You are so right.

tlongmire profile image
tlongmire

Very inspirational. So glad you found love and happiness! :-)

Hugs, Terri

wordworks2001 profile image
wordworks2001 in reply to tlongmire

Thanks Terri. Hugs back at you.

DeParkiePoet profile image
DeParkiePoet

Well said Mister Wordsworthreading!

WOW, your story is awesome and very inspiring. In 4 years we will be kid free. My hubbs and I have always been interested in traveling . I just thought it would be after the kids are done with college. thats about 6 to 8 years I was informed last night by my daughter that she WILL be finished with school and will be a hurricane hunter pilot in about 6 years.she does not need me to wait around for her. My son (I want to be in the NFL) says MOM go have fun. My Gawd, youv'e been hanging out with us so long you need to go live your life and have fun. Well I guess I was told a thang or two. Thanks for your story.

wordworks2001 profile image
wordworks2001 in reply to

Sounds like you have some great kids. I believe it is never too early for us to start working on our bucket lists but sometimes it is too late.

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