Minnesota Parkinson's Activist Calls for Senate Vote, Passage of Stem Cell Research Enhancement Act
Statement by Jackie Hunt Christensen, Parkinson's disease activist and Minnesota state coordinator for Parkinson's Action Network, at the Coalition for the Advancement of Medical Research rally for H. R. 810, the Stem Cell Research Enhancement Act, on Wednesday, May 24, 2006. The event was held on Capitol Hill, Washington, DC.
Minneapolis, MN (PRWEB) May 28, 2006
The following is a statement made by Parkinson's disease activist Jackie Hunt Christensen. She made these remarks at the Coalition for the Advancement of Medical Research rally on Wednesday, May 24, 2006, on Capitol Hill in Washington, DC. The rally called for the Senate to vote on H. R. 810, the Stem Cell Research Enhancement Act, and to pass it unamended.
Ms. Hunt Christensen said,
"May 24, 2005 was an amazing day for me. In the morning, I spoke at a press conference convened by the Coalition for the Advancement of Medical Research, talking about why I think that embryonic stem cell could lead to treatments or a cure for Parkinson's disease and many other chronic illnesses if research restrictions were lifted. Representatives Mike Castle and Diana DeGette, co-authors of H. R. 810, the 'Stem Cell Research Enhancement Act' were there, as well as others affected by juvenile diabetes, spinal cord injury and cancer, respectively. In the afternoon, I sat in the gallery, listening to the entire floor debate and vote.
"H. R. 810 passed the House with bipartisan support and we had thought it would go quickly to the Senate, where it would pass, and then go to the President.
"It really didn’t occur to me us at that time that something so important – and controversial – would just languish for a year. A year is an incredibly long time and it breaks my heart to think of the research that could have been going forward in this year – but hasn’t – yet my life and disease has. These past twelve months have brought tremendous changes to my life. Here are just a few:
"In June 2005, I was finishing the edits to my book, The First Year: Parkinson's Disease. Completion of these edits was greatly hampered by the severe dyskinesia (involuntary writhing movements caused by the levodopa medication used to treat Parkinson's disease). When we went out to dinner to celebrate, I was moving so much that I could hardly eat or drink.
"In July, I traveled to Phoenix to speak at a breakout session on advocacy and PD at the 3rd annual Young-Onset Parkinson Network conference. My presentation went okay, but I was extremely wiggly, which I'm sure made it difficult for the AV technician trying to videotape the session.
"July and August in Minnesota meant hot, muggy weather. For me, this meant that my medication didn't work as well. (There is no scientific evidence for that phenomenon, but try telling that to my neck and shoulder muscles!)
"At this point, I was having very little time when my medication would work without inducing dyskinesia. The rest of the time, I was so stiff that I almost felt frozen. For the first time in seven years, I felt like a prisoner and that the disease was winning.
"I then did something that I swore I would never do: I called my neurologist and said 'I'm ready to talk about deep brain stimulation surgery.' In fact, those of you who were at the House press conference last year heard me say that I would not consider DBS. I had been avoiding this conversation for years since he had first mentioned it, in part because I kept hoping that something better would come along.
"I felt DBS was not something I would ever pursue because DBS is exactly as it sounds – brain surgery that lasts for as long as 12 hours to implant electrodes deep in your brain tissue that can help better regulate the movement problems created by Parkinson’s. In addition, you need to be awake during the surgery to make sure the electrodes are placed in exactly the right place to have the nest effect.
"It was so painful to have to accept that the status quo wasn't working either, so we had to put our faith in this surgery. But this surgery is not a cure. It does not slow the progression of the disease and it is invasive and has side effects
"In September, my older son, Alex, began his freshman year in high school. He made the soccer team and it was so awkward attending his games. The other parents largely avoided me—no doubt frightened by my constant writhing or the aloof mask-like expression on my face.
"In late November, I heard that I'd been approved for the surgery. My condition had deteriorated considerably – probably due at least in part from the stress of facing brain surgery that still gives me the willies. I was unable to enjoy many of the hobbies I'd taken up – painting, drawing, making jewelry and writing poetry – because there was so little calm time between the dyskinesia and the rigidity.
"The surgeries took place at the end of January – not a particularly appealing time to be in Cleveland, but then again, I was in so much pain that I was not in the mood for sightseeing. My husband and I were away from our sons for 10 days, and for at least another week, I was so doped up on pain medication that I still wasn't really 'there.'
"All of this was very stressful for our family. I am very blessed to have a devoted husband who tells me every day how lucky he is that I am his wife. PD proves to be too much of a strain for many young couples dealing with Parkinson’s, and when they split, it leaves another person with PD desperate to find public services to provide their care.
"I am thrilled to say that for me, DBS surgery has been very beneficial, but I am aware that it is not a permanent solution. DBS will mask my symptoms for an unknown period of time, improving my quality of life, but it does nothing to slow the progression of the disease. It has not been so beneficial to our finances: the expenses associated with all of the trips to Cleveland has already cost us about $8000. We are extremely blessed to have good insurance, because there is no way we'd be able to pay the $137,000 bill. Many others with PD are not so lucky; they may be ineligible for the surgery because of other health issues, or simply unable to afford it.
"These are just some of the things that have happened over the past 365 days. One year. If my disease can progress so much in a year and I can take the steps I must for the sake of my life and my family, then why can’t Senator Frist take the action he promised almost a year ago and allow this bill to come to a vote. After all, nearly three-quarters of Americans surveyed said they support embryonic stem cell research.
"HR 810 does not guarantee any cures, but the research does hold great promise for unlocking the mysteries of diseases like Parkinson's, Alzheimer's, juvenile diabetes and so many more. And the new cell lines will give us greater understanding of all types of stem cell research, including adult stem cells.
"Please, Senator Frist, put HR 810 before the Senate for a vote before the summer recess. And please, members of the Senate, pass this bill without amendments, so that people like me do not have to spend our time looking back on how we have suffered but are able to look forward with hope, to a day when our suffering may end."