Thursday, April 30, 2009

The Walk

The Parkinson's Unity Walk... Wow; what an experience that was. It was uplifting and yet sad in some ways, happy and bittersweet. It was proud and defiant, yet humbling as well. To see all those thousands of people whose lives have been altered by PD in the same ways that the lives of my family and myself have been... well, it's indescribable.

It was also unexpectedly physically challenging for me. I think it was because it was so hot (around 85 degrees), and we had to sit still so long waiting for the speechifying to finish up. Anyway, for whatever reason, my leg started acting up again about halfway through and I had to depend on my cane to finish the walk. I made it, though! It was so great to have my family and friends there with me, too.

Regrets:
1) Friends that couldn't make it there.
2) Not being able to meet with everyone that I knew, and not having enough time with those I did meet.
3) Getting separated from most of the team.
4) Not being able to get the people around us to sing with us as we played our little ukulele song!

Special joys:
1) The weather. It was hot, but so beautiful! I'd rather have that than rain and cold any day.
2) Meeting so many "famous" people for the first time face to face (like Cherie, and Rachenista, and Tigger Girl, and Mamamia, and Dixie Pixie, and Dylis, and Moakes and Jeana, and ... well, you all know who you are!).
3) Seeing our beautiful quilt unfolded for the first time, and seeing the admiration and appreciation on everyone's faces.
4) Just observing all the different people there; babies, children, young adults, baby boomers like us, older people, people of all colors and types. I smile when I think of the group of young guys with their skateboards who just came in off the street and walked with us for a while. After about 10 minutes, one of them asked "So... what are we marching for?". Love it.

Thursday, April 23, 2009

Two more days

Here we are in NY state, about 40 minutes from NYC. It's two days until the Unity Walk, and we are all sick. Me, my Dad, my brother, my husband; we all have a bad cold. I imagine that my Mom and my brother's fiance, Debra are next. On top of that, my Mom is not doing as well as she had hoped. We were supposed to all go to a show and to dinner in the city yesterday, but she couldn't come. She broke her back a couple years ago, and has never really recovered. Last night, she fell again. I'm so worried about her, and I'm not sure what to do. My husband and I are supposed to go up to Brooklyn and spend the next few days with my brother and Debra (they're going to the Walk with us), but I just don't know.

Well, I'm pretty sure I'll make it to the Walk one way or another. I can't imagine coming all this way, being only 40 minutes away and not going!

Wish me and my family luck... I think we need it.

Friday, April 17, 2009

Off on the road to NY

So here I am, getting ready to leave for NY. We'll be visiting with my family for a week, then participating in the Parkinson's Unity Walk in Central Park on the 25th. I'm so excited!! It's going to be an emotional event for me, I'm sure.

My blood work came back normal, so maybe I don't have to worry about hemochromatosis right now. I'm glad I found that out before we left on our trip; I hate worrying about that kind of stuff, especially when I'm trying to relax and have fun!

Unfortunately, I'm in a little pain, because we got a little over-enthusiastic while dancing the other day, and the upshot is I think I may have broken a rib. If nothing else I pulled the heck out of the muscles and/or bruised the chest. Oh well, into every life a lttle rain must fall, right? Nothing is going to ruin the Unity Walk for me!

Monday, April 13, 2009

More on Hemochromatosis

Did some research last night about Hemochromatosis and found this interesting little tidbit from the Iron Disorders Institute web site:

Mismanaged iron in the brain is seen in those patients with neurodegenerative diseases: Alzheimer's, early onset Parkinson's, epilepsy, multiple sclerosis, and Huntington's disease.


Hmmm.... makes you wonder. In the last 4 years, I've had 2 spikes in blood iron. I compared the testing dates with my blood donor history and found that in both cases, there had been a "gap" in my regular blood donations for one reason or another. The worst one happened after I hadn't given blood for over a year.

I think I need to talk to my doctor about this, especially since I'm no longer menstruating, so I'm at higher risk for extra iron building up in my body. I also need to do some more research.

Saturday, April 11, 2009

Genetic testing results from 23andMe

I got my test results back from 23andMe last night. After puzzling over the reports for a while, I figured out the following facts of significance to me:

1) I do NOT have the LRRK marker that is associated with the highest risk of genetic PD. My risk for Parkinson's is listed as dead average. The great news here is that my son is unlikely to inherit PD from me, and the rest of my family does not have an increased genetic risk either.

2) I do NOT have any of the 3 BRCA mutations most commonly associated with inherited breast cancer; this is a HUGE relief to me, especially in light of my family history.

3) I DO have an increased risk of Rheumatoid Arthritis, type 1 diabetes and age-related macular degeneration.

4) I carry 2 copies of a gene mutation for Hereditary Hemachromatosis, giving me a "mildly increased" risk of Hemachromatosis (iron overload). This is interesting to me, because I have had problems with anemia not associated with low iron, and I have also tested high in iron on a couple of occasions. Unfortunately, this is something that can be passed on to one's children.

5) I also MAY have an increased risk of abdominal aortic aneurysms, alcohol dependence, brain aneurysm, heroin addiction, exfoliation glaucoma, dyslexia, and something called Primary Sjorgen's Syndrome, whatever that is.

Whatever. I'm not sure what to think about any of that yet. I'm not really worried, though.

My ancestry turns out to be very boring; I come from entirely European stock. My genetic "haplogroup" is listed as European type "H", which is mostly Scandinavian and Basque populations, but is spread all over Europe and the near East. I kind of knew that, but I was hoping for something exotic in my genetic makeup! Oh well. I guess my ancestors were Vikings.

All in all, the data are very interesting, and I'm glad I took the "23andME" offer. The folks from "23andMe" came to talk to our support group today, and that was very interesting as well. I think this is an exciting project, and I'm very glad that I have the opportunity to participate.

Monday, April 6, 2009

Good advice; PLEASE READ THIS!!

My friend Sherri at Parkinson's Journey wrote an excellent article on "awareness" and what that means. She also has some terrific advice, not only for people with Parkinson's or other chronic illnesses, but really for everyone. There's a link to the Parkinson's Journey blog on the right side of the page, but here's a link to Sherri's article:
http://parkinsonsjourney.com/aware-an-extraordinary-action

Wednesday, April 1, 2009

Comforting images


I don't know about anyone else, but whenever I start to stress, I hold an image in my mind of a place where I feel safe and happy. In my case, that's my grandparents' house in New Mexico back when I was a child. I was thinking of this the other day, and this poem kind of wrote itself in my head:

Wind in the trees,
Warm Summer breeze,
Grandma’s garden in bloom,
Quiet windowseat room.

Rain on the mesa,
Lightning in the air,
Thunderheads rolling,
Wild wind in my hair.

The music of rain falling,
The sound of Grandma calling,
The thirsty desert sighing,
The sudden storm is dying.

Colors on the mesa,
The dusty scent of rain,
Bittersweet and vivid memory,
Always there to ease my pain.

Wind in the trees,
Soft desert breeze,
Though all this is gone,
In my mind it lives on.
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About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.