MS Donations: Giving More than Money
So many of the decisions I make with having Multiple Sclerosis are based on my personal preferences and I alone am responsible for the choices I make after consulting with my husband and family. I had the final say on whether I would treat my MS with disease modifying drugs, or let it run its natural course and take my chances. I decided to use a neurologist and MS Clinic that is 90 minutes away from my home instead of settling for a general neurologist in my town. I can’t control having MS but I can have some say as to how it is approached in my ongoing medical care.
Two years ago I made another choice - I decided to donate my body, when I’m done with it of course, for medical research at the Boonshoft School of Medicine, Wright State University. They have a widely recognized and highly respected anatomical donation program, and after meeting with the director, I was very comfortable with my decision. There is a laminated card tucked into my wallet, just behind my driver’s license, that lists my donation program ID number as well as the contact numbers when that time comes.
Normally this program does not accept people who are also organ donors, because that is an entirely different pathology process, but they do make an exception for people with neurological disorders such as Multiple Sclerosis, who wish to donate their brain and spine (central nervous system) for specific research. As a person with MS, it isn’t clear that anyone would want or take my organs through donation, not knowing how MS is really caused.
I had hoped to make this a shared donation with the MS Center at Ohio State, but they have not been able to put a pathology program in place to specifically study MS donors, so they are no longer an option. When I met with the Boonshoft Anatomical Donation Director, he mentioned that just the previous week they had sent a donor’s brain and spine to the Rocky Mountain MS Center, and they are more than happy to work with them. That sent me researching again into their program and I am pleased to read that with the support of the National Multiple Sclerosis Society, they support MS research worldwide by supplying tissue samples to researchers.
MS cannot be studied in animals other than humans – we are the only species who has this disease despite all the experiments on mice and rats – and our brain and tissues from our central nervous system can only be sampled and studied when we are deceased. We need every bit of those tissues while we are alive.
I have been studied repeatedly at OSU in their high-powered 7T MRI – being in the MRI tube doesn’t bother me in the least, so I am happy to volunteer. There are extensive sets of images of my brain, and perhaps there is more to learn from these pictures when they can compare them to my physical tissues. The need for research into finding the cure and the healing therapies for MS remains urgent, and perhaps when I am done with this body, it will yield answers for someone else.
My neurologist tells me I shouldn’t concern myself yet with these details, and that I am still a young woman and most days I would agree with him. Being in my late 50’s isn’t old and I don’t think of making these after-death plans solely on my age; unfortunately I recognize that young people die, too. Besides, the odds of dying are 100% and I would like one more good thing to come out of my life when that time comes.
Today I put into the mail the large brown envelope full of forms detailing my biographical data and medical history and several witnessed signed consent forms and copies of my Boonshoft donation forms, and it is on the way to the Rocky Mountain MS Center. They will send me another donor card that I can tuck into my wallet along with the first one. Now that I have made this decision, I am counting on my family to see that my final choice is honored.
Wishing you well,
How many specialists did you see before finding "The One"?