Memories of Parkinson's Disease

Children can see disease quite differently when adults don't panic

We have replaced Peter's story with a reflection on the way children see the way diseases can affect the lives of the people who have to live with those diseases. We will resume the discussion of bright light for PD, neurological diagnosis, and the way people consider disease to be the elephant in the living room on another day.

Reflections on a Childhood Memory of Parkinson's Disease

                        by Mags

Thinking back to my childhood, I hold memories of my grandfather's daily diabetes testing. I remember that every morning he would test and then calmly give himself a shot of insulin.  We never talked much about it, it just was there, part of his life and part of ours in the early morning.  He never seemed to have a problem; he was diligent about the testing and the insulin and that was that.

There was always a private stash of Hershey bars in his dresser drawer just in case. His diabetes developed later in life and if it cut his life short, he still lived to be 89. What I really remember about him was that he was a wonderful storyteller, had a real sense of humor and enjoyed arguing with my father. He had diabetes, he dealt with it daily so that he could go on with the things he enjoyed.
                         ~ ~ ~ ~ ~  
I remember a wonderful cousin who had juvenile diabetes, a friendly jovial disposition, a father with serious money. Together they spent his childhood traveling around the world trying to find a clinic or hospital which could cure him.

As an adult he was in a weird denial about his condition. You never knew if he was going to go into insulin shock or a diabetic coma because you never knew what he had eaten at his last meal of snack. As a result of his journeys with his father, he loved to travel but cast the disease to an ignored corner. Although in and out of hospitals because of problems caused by diabetes, he refused to identify with it or to be identified by it. Michael pursued an impossible dream of not having diabetes. And it killed Michael when he was in his early 30s.
                         ~ ~ ~ ~ ~

I also remember my grandmother's second husband, a successful businessman with a nasty way of dealing with waiters and waitresses.   By contrast his hobby was portrait photography. And he was better than good.   As I sit here I can see his photograph of a favorite great uncle.  What I see is the handsome essence, the intelligence, the gentleman, and the loneliness of that uncle - I see what professional photographers strive to achieve throughout their careers.

When Bombi (my toddler name for grandma's husband) developed Parkinson's, he was told by his disability insurer that if he was claiming the disability, he would also have to give up the photography to be indemnified...which he did...it was good business for him (it would have broken my heart). I remember his hand tremor as I was growing up. I knew he had PD but that wasn't who he was - the tremor was just a part of him. I remember a man who had sold his joy in life for survival.
                       ~ ~ ~ ~ ~         
Valuable lessons are provided as we grow. What we see as children becomes part of who we are, how we think, feel, react and live.

Parkinson's Disease Community: Stem Cell Guideline Input Deadline Only 12 Days Away

Now is the time to make your voice heard by using your keyboard

This is easy. On May 2rd we posted the links to both the NIH comment submission form and the Parkinson's Action Network suggested wording template letter to the National Institutes of Health. If you haven't submitted a comment, you have only 12 days remaining to do so.

We thought you might be interested in that the ISSCR, International Society for Stem Cell Research had to say to their scientists in their Draft NIH Human Stem Cell Guidelines Comments Information letter distributed recently.

Consider that all constructive input helps. There is concern that members of the scientific community who are inundated by paper may not take advantage of this window of opportunity. So it is time to forward the PAN and the ISSCR letters to the people we know in scientific fields. Perhaps your doctors would like a voice. The request might come better from you than an organization.

Don't forget, this isn't just about Parkinson's disease, it is about cancers, diabetes, kidney disease, ALS or Lou Gehrig's disease, multiple sclerosis, catastrophic spinal cord injury, heart disease, retinal disease, arthritis, burn victims and many others. It is about the potential to save not only the living but the quality of life. In the long run, it may also be about being able to cut health care costs and prevent the death and suffering of countless lab animals.

In order to be counted you need to click on the article link and in it you will find the next links. The time is here, let's move forward.

Interesting reading

Stem Cell Ban To Be Lifted Soon

Obama To Lift Stem Cell Ban Soon - Will Funding Still Be Available?

Addressing the issue of lifting
the ban on use of embryonic
stem cells in research, a senior
advisor to President Obama
said on Fox News Sunday
"We're going to be doing something on that soon, I think.
The President is considering that right now."

Obama advisor David Axelrod said President Obama will soon issue an executive order lifting an eight-year ban on embryonic stem cell research imposed by his predecessor, President George W Bush.

In 2001 Bush banned the use of any embryonic stem cells lines which didn't already exist in an attempt to placate his right wing Christian fundamentalist backers who had played an important role in his election to the presidency.

Rather than making use of existing embryos slated for destruction by fertility clinics, Bush announced that those soon-to-be discarded embryos were not to be used for spare parts in a public crawling baby dog and pony show to the applause of some and the horror of many. While private parties struggled to raise research funds, Congress hustled to enact and pass corrective legislation only to be vetoed.

Embryonic stem cells are the master cell of the body; they can be made into any other kind of tissue. Instead of funding at a time when it would have been possible and encouraging embryonic stem cell research, former President Bush's policies caused research labs to waste their valuable time and limited monies keeping separate accounts of approved and unapproved stem cells. In the research equivalent of keeping kosher, universities had to establish and maintain separate facilities and funding sources.

Many researchers have long felt that learning to understand embryonic stem cells will bring us to the cures for many chronic neuromuscular and auto-immune diseases such as Parkinson's, Huntington's, ALS, type I Diabetes, Guillain Barre' and Rheumatoid Arthritis.

Since President Obama took office sufferers and advocates of these diseases have been hoping and waiting for this pending executive order. Hoping for an end to Bush's anti-intellectualism and waiting for the President to complete the economic stimulus plan.


Sources:
15 Feb. 2009, Fox Sunday News
15 Feb 2009, Reuters, Alan Elsner

FDA Okays Embryonic Stem Cell Clinical Trials

According to a Geron Corp press release, the FDA is allowing Geron Corp to begin human clinical tests of embryonic stem cells (ESC) for the treatment of acute spinal injuries. Geron will use ESC to try to regrow nerve tissue in patients.

Although the FDA had received the request to begin clinical trials since May 2008, they remained silent until now - possibly still reading the 21,000 page document.

The FDA action coming just a few days after Obama became President is heartening to patients who have chronic diseases such as Parkinson's, juvenile diabetes, MS. ALS and many other illnesses. It holds great promise for new treatments and transplants.

Geron Corp (GERN) is a San Francisco, California based biotech company developing biopharmaceuticals for treatments of cancer and degenerative diseases. Shares are trading up as of the announcement.

addenda 1/24/09
for additional information refer to: http://www.medicalnewstoday.com/articles/136413.php
Commentary about action and use of adult vs embryonic stem cells:
http://www.medicalnewstoday.com/articles/136553.php

ONE SIGNIFICANT STEP FOR PARKINSON'S STEM CELL RESEARCH

Democrat Jeanne Shaheen, New Hampshire's first female governor is now New Hampshire's first female US Senator. She came out the winner in a hard fought contest against Republican incumbent John Sununu. Her campaign attracted interest and support from across the country.

She took a strong stand in favor of embryonic stem cell research calling for increased levels of Federal research spending. She said that the Bush administration has sought to diminish scientific research and development during the last eight years and called for a new direction.

Parkinson's sufferer and leading advocate Michael J. Fox campaigned with her in September of 2008 calling to remove ideology and politics from science. Senator-elect Shaheen's 10 year old daughter has juvenile diabetes.