Sunday, March 9, 2008

Why Nestle?

I have a long standing hostility towards the Nestle Company for their blatant violations of the World Health Organization's "Code." I don't buy Nestle products and to the best of my knowledge I don't support/use/visit any Nestle Company/Nestle Foundation facilities or products. But it seems I now have one more PD related issue to be conflicted about.

The Nestle Foundation, which was established in 1966 by a huge donation from the Nestle Company, is a big supporter of Parkinson's research, and has given thousands of dollars in grants to various PD related causes, such as funding to find a cure.

So as much as I hate Nestle and will continue to boycott them, I've gotta say they've done some remarkable things for PWP. I can't deny the fact that they played a huge role (monetarily) in the breakthrough finding of the cause of Parkinson's. Still, the conflicted selfish part of me wonders why they can't just stick to candy and (gasp!) formula.

So Now We Know

From the Northwest Parkinson's Foundation:

Parkinson's Cause Identified
advance - Researchers at the Saint Louis University School of Medicine and Washington University in St. Louis, MO have discovered the key brain chemical that causes Parkinson's disease - a breakthrough finding that could pave the way for new, far more effective therapies to treat one of the most common and debilitating neurological disorders (Acta Neuropathologica, February 2008).

Currently, the main approach for treating Parkinson's disease, which afflicts more than 1.5 million Americans, is to replace dopamine that's lost when the cells that produce it die off and cause the disorder. With this new research, scientists can better work toward 'neuroprotective' therapies - those that actually block dopamine cells from dying off in the first place.

"We believe this work represents a very significant breakthrough in understanding the complicated chemical process that results in Parkinson's disease," said William J. Burke, MD, PhD, professor of neurology at the Saint Louis University School of Medicine and the lead author of the study.

"For the first time, we've identified the chemical that triggers the events in the brain that cause this disorder," Dr. Burke stated. "We believe these findings can be used to develop therapies that can actually stop or slow this process.

"Parkinson's disease occurs when some nerve cells in a part of the brain called the substantia nigra die or become impaired. Normally, these cells produce dopamine - a vital chemical that allows smooth, coordinated function of the body's muscles and movements.

When about 80 percent of these dopamine-producing cells die or are damaged, the symptoms of Parkinson's disease begin to appear. These include tremors and shaking, slowness of movement, rigidity and stiffness, and difficulty with balance.

Scientists have long known that a key protein called alpha-synuclein plays a role in the development of Parkinson's disease. Alpha-synuclein is found throughout the brain - but in some people, the protein clumps together. This causes the death of the dopamine-producing cells, which in turn causes Parkinson's to develop.

The researchers discovered that dopamine itself actually plays a role in destroying the cells that produce it.

In the process that leads to Parkinson's disease, dopamine is converted into a highly toxic chemical called DOPAL. Using test-tube, cell-culture and animal models, the researchers found that it is DOPAL that causes alpha-synuclein protein in the brain to clump together, which in turn triggers the death of dopamine-producing cells and leads to Parkinson's.

"This is very exciting," Dr. Burke said. "This is the first time that anyone has ever established that it is a naturally occurring byproduct of dopamine that causes alpha-synuclein to aggregate, or clump together. It's actually DOPAL that kicks this whole process off and results in Parkinson's disease."

The research was supported by grants from the Missouri ADRDA Program, the Nestle Foundation, the St. Louis Veterans Administration Medical Center, the National Institutes of Health, the American Federation on Aging Research, the Alan A. and Edith L. Wolff Charitable Trust and the Blue Gator Foundation.

Martial Arts and PD

Keith recently posted on his blog about new developments in boxing as a way to treat the symptoms of PD. We wondered if martial arts would have the same effect. I've done a bit of research, and as I expected martial arts is wonderful for PWP. Specifically, T'AI CHI seems to be the style that stands out as being most effective. It really helps the body relax and loosen up. Jerry Wild has some great information on his site as well as a T'AI CHI workout dvd you can order.


Parkinson's and the Art of Getting Out of Bed

Many PWP have trouble getting in and out of bed and Keith is no different. Well, actually he is. PD has not progressed enough in Keith to really give him much trouble with movement and getting up and down. The problem stems from co-sleeping. Over the course of the past year we have had to adjust our sleeping arrangements to accommodate our daughter and to safely co-sleep. Currently our mattress is on the floor with her crib mattress right next to it, wedged between us and the wall. This is our safest option for now, but unfortunately it makes it difficult for Keith to get in and out of bed.

Getting in the bed is not so bad; it's getting up that's the problem. He usually has to roll over from his back right onto the floor, on his hands and knees. The he grabs the doorknob and tries to hoist himself up. It doesn't work very well. We have a flimsy little table next to the bed, but that barely holds the alarm clock. I think I'm going to put a sturdy chair there for now. That would be low enough for him to really grasp on to from his kneeling position on the floor, but strong enough to hold him.

I've been thinking also about having someone build some type of railing that he can grab. I'm just not sure how that would work. I'm afraid to attach anything to the wall because the house is sooooo old - not sure it would hold. But since we don't use the bed frame right now, I don't know how we could attach a railing to the bed. I guess we could build it from the floor up. (??)

If anyone has any ideas on what and how to build some type of railing, let me know! I certainly would appreciate it!

Tuesday, March 4, 2008

Uh, Sorry Babe!

I have just realized that I don't have a link to my own husbands blog!!
Ah, I guess that's what happens when you blog with a one year old, two year old and three year old playing at your feet!


I know all you fellow bloggers have seen it - "earn money with your blog! Sign up for AdSense!"
Okay, I just did.
I've been going back and forth on this one for quite some time. I have been feeling a little like I'd be cashing in on my husbands illness. But then I got to thinking about exactly what I would do with the money. Easy - I'd put it into a separate savings account to be used for Keith's medical bills.
I certainly don't expect to be able to make a living off AdSense. And I certainly don't expect to get more than a few dollars a month, if that. But if years down the road I am really strapped for cash and Keith needs his meds, or the power bill needs to be paid, I hope I can draw from this account and pay what needs paying. I am a firm believer in "every cent counts" and I currently have several other projects in the making (I'll blog about those at another time) that will, hopefully, bring in some revenue, all of which will be set aside for Keith.
So I've submitted a request for ads to be placed on this blog. I guess I'll know in a few days if I've been accepted or not.

We've Had THE Talk - Again

Keith and I have once again found ourselves discussing the topic of Living Wills. I have an uncle who is currently dying of cirrhosis. He never made up a living will, therefore, it is up to his 20-something son to decide what to do. Not a good situation. Also, an acquaintance of Keith and his family, a fellow PWP, has recently committed suicide. He also had prostate cancer, I believe.

So here are my feelings on the matter: I think living wills are great. It's nice to know that if you should become incapacitated and unable to make your own medical decisions, there is someone that you trust and have appointed to make all those decisions for you. Most importantly, that person will follow the wishes you have outlined for your medical care. BUT, I could never be the person appointed to follow through with those wishes.

I have made it perfectly clear to Keith that 1.) I am very pro life, and although I would never, ever want him to suffer I simply can not and will not pull the plug, so to speak. And 2.) If he wants to establish a living will, he'd better put someone else in charge. Finally, 3.) If he doesn't set up arrangements ahead of time, fine, but he'd BETTER NOT even think for a single second that taking his own life would make things better for the rest of us.

Now I completely understand how and why someone would consider suicide if they had a chronic and/or fatal illness. I understand that one would not want to suffer or put his/her family through hell in the process. But as I have had someone very near and dear to me commit suicide, I can honestly say that it doesn't matter what the reason - those you leave behind will never fully recover from it. Keith knows how much my own family and I have suffered with our loss, but I really don't think it has sunk in. I truly don't. I get the impression that he believes it is an okay thing to do if you are suffering terribly from an illness, such as cancer or late-stage PD. Don't get me wrong - Keith has never said he would do it. In fact, he always states the opposite, that he would never do something like that. But he's just a little too understanding, if you know what I mean. He acts like the only reason he says he would not commit suicide (if he ever got to that point of suffering) is because I am adamant that he not do it. I get the feeling that if I told him "I understand. If you really feel like you need to do it, then go ahead" then he would actually do it. (just to be sure you know, I am speaking in hypothetical terms only! I am only talking about IF Keith should get to a really bad place with PD.)

I wish he would just go ahead and set up a living will. Even though I don't want to be the person who makes the final decision regarding his life, I really think it would make things a lot easier.

It just popped into my mind that maybe I'm being selfish by not wanting to be "the one." I guess the only other person right now who could really take on that role is Bryan. I really don't want to put that on him, either. But for me it's more of a moral dilemma. I don't believe in it, though I do understand it. This kinda goes back to the stem-cell research debate - my morals or my husband??? Hmmmmm . . .