Would you believe, he told us at our Parkinson’s Support Group meeting to take our daily antioxidants and low dose aspirin.  He is Mark L. Weiss, Ph.D. whose life is centered on doing research on the potential of what is called Wharton’s Jelly.  Wharton’s Jelly is found in umbilical cords, a non-controversial source of stem cells.  Let me add immediately that Dr. Mark pointed out that he is not a medical doctor but a Ph.D. Any choices we make concerning medicine, even over the counter medicines should be checked out with our medical doctor.  He did say that it seemed pretty safe to suggest doing what every doctor and most everyone else also suggests, that we take antioxidants and low dose aspirin.

His encouragement to do so comes with the answer to the question, why?  Parkinson’s disease is caused by the death of the neuron cells in the brain that produce dopamine.  What kills those cells is an oxidant as in “anti”oxidant.  What first popped into my mind when I heard that was, broccoli wins again.  Eat those antioxidants.

The process that sends those killer oxidants on the attack is inflammation. Oddly, one of the hints that inflammation can play into the process that produces Parkinson’s Disease came after the flu epidemic of 1918.  There was an increase in Parkinson’s Disease after that epidemic.  Non-steroidal anti-inflammatories such as aspirin reduce inflammation. That is why the Cardiologists suggest taking them — to reduce the inflammation in the heart.

What was exciting about Dr. Mark’s presentation at the Parkinson’s Support Group meeting tonight was that certain umbilical cord cells (UCMS) found in Wharton’s Jelly can produce a form of stem cells having properties that hinder inflammation, interfering in the cycle that produces the death of the Neurons that supply the brain with dopamine.  In addition, there is a bonus that results in the rescue of the neurons that are dying.  If that is not enough, there is evidence that those particular stem cells can be transplanted without triggering rejection.

Please understand that what I have just written is what was heard by a retired pastor who has no formal medical training other than making thousands of hospital calls, listening to multiple doctors who deal with Mary Ann’s many medical problems, and going to many a Parkinson’s Symposium.  I could easily have completely misunderstood.  I will email my blog address to him and invite Dr. Weiss to comment and correct, although I am sure he has much better things to do.  All who read this post need to understand it is just my take on what I heard.

What I left wtih tonight was not so much an expectation that there will be anything that comes of this research that will change Mary Ann’s situation.  It was more an excitement that there are possibilities for slowing down the progression of the disease in those diagnosed with Parkinson’s.  Even hope that may not change our situation is hope.

Tonight I gained a level of understanding of this disease that I have never experienced before.  I credit the knowledge and communication skills of Dr. Mark.  I can’t speak for the rest of the group, but judging from the questions, it appeared that most of us gathered in that room now understand the disease process of Parkinson’s as well as some Neurologists.

Gathering with a room full of people who understand what it is like to live with Parkinson’s Disease is comforting.  We talk the same language.  We can talk about things that would either bore others or cause them to feel uncomfortable.  For some reason I feel empowered just by knowing more about the disease process.  It demystifies it.  Knowledge is power.  That Dr. Mark and others in the research community know as much as they do, increases the likelihood that a number of approaches to treating Parkinson’s will emerge in the years to come.

Tonight’s Speaker: Mark L Weiss, Ph.D. Professor of Neuroscience at Kansas State University; Associate Director of the Terry C. Johnson Center for Basic Cancer Research; Founder of the Midwest Institute for Stem Cell Biology; Anatomy and Physiology, College of Veterinary Medicine.

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Who can we talk with about our predicament, who isn’t tired of hearing it or just doesn’t have any frame of reference to really understand what we are going through?  It is terribly easy to become isolated.  Since conversation isn’t an easy thing to accomplish when words for one are difficult to find, let alone get out where they can be heard, a longing to talk and listen and be understood. 

Last Thursday evening Mary Ann and I attended a monthly Parkinson’s Support group meeting in our area.  The group varies in size, but lately I would guess there have been thirty-five to forty-five of us in attendance. 

I remember the first support group we attended just a few years into Mary Ann’s diagnosis.  It was in another city — a large group with Parkinsonians at all levels of symptoms.  I can remember seeing one man in particular who was so dyskinetic that it was all he could do just to stay on the chair, arms and legs flying everywhere.  I suspected it would be so.  After that visit to a support group, it has been all but impossible to get Mary Ann to another one anywhere.  It just seemed scary to see the possibilities for her future right there before her eyes.  It was a denial shattering experience. 

Now that I am retired, we have started attending a local Support Group.  Mary Ann is now far enough along in the progression of the disease that there are few, if any, more debilitated than she is present at any given meeting.  Last Thursday was one of the times we separate into two groups, Caregivers and Carereceivers.  Those who attend the support group seem to especially appreciate the evenings we divide into the two groups. 

There is an agreement we make when we head into our respective rooms.  What happens in Vegas, stays in Vegas.   We are free to talk openly about our respective struggles without concern that what we say will be shared with anyone outside those gathered there.  That means, I will not share what was said, at least in specific terms, only in general terms. 

Both Mary Ann and I especially appreciated our respective group conversations last Thursday.   In the Caregiver group, we share our unique circumstances and our central problem.  We understand each other.  We help each other by sharing how we have dealt with challenges that are just coming over the horizon for others.  We pool our knowledge and each leaves with a new piece of information, a new possibility for dealing with whatever we are going through at the moment.  If nothing else, we have had a chance to vent for a moment with people who actually do understand what we are going through. 

It takes courage to break out of our isolation and open ourselves to people, most of whom we barely know.  When I was working full time, my circumstances allowed me to talk freeling with caring people with whom I worked.   When I retired, that outlet ceased.  That support group ended.  I realize now even better just how important it is to take seriously the need to connect regularly with people who are traveling the same landscape, who can support us in very concrete ways with information and insight. 

The Leader who facilitates our group on the evenings we divide into the two groups is the Caregiver Program Specialist for this Area’s Agency on Aging.  The website for our Area Agency is www.jhawkaaa.org. I suspect that in most other areas there are such programs available.  We discovered that help is available for some of the equipment that is needed to help with the mobility and safety of our Loved Ones. We discovered that there are programs that provide respite care so that Caregivers can have a break from hours to days, including overnight.  There is even some funding that allows that care to be given at little or no cost to folks who need the help, with no income guidelines restricting its use.  While there may or may not be funds in your area, it is important to look for support options.  We cannot do this for long by ourselves.  For our sake and the sake of our Loved One, seek support options. 

In our case, the combination of family, Volunteers, paid workers from private agencies, and County or Regional programs for the Aging combine to help us find a balance that raises our quality of life.  For those who have earned income and must use paid help to keep working, there is a tax credit available for dependent care. 

One piece in the support puzzle for me is an online group for the spouses of those who have Lewy Body Dementia.  Since Mary Ann has now been diagnosed with Parkinson’s Disease Dementia, the group has been a meaningful addition to my world of Caregiving.  That group is available at any time day or night.  They are as close as the keyboard on the computer.   Members of that group share completely openly, confident that others understand.  Someone in that group has been, is now, or will be experiencing their plight.  Members can cry on each other’s shoulder or laugh at the silliness we sometimes encounter.  Whatever the chronic disease that lives at your place, there is likely to be an online group to be found by searching for the name of the disease adding words like support or support groups.  I found this group through the Lewy Body Dementia Association site,  www.lbda.org.

Caregivers do not only give the hands-on care, we are charged with the task of seeking out and managing options for support that keep us and our Loved Ones safe and healthy.  When someone asks what he/she can do to help, suggest conducting a search of resources.  As Caregivers we are often overwhelmed with the steady stream of needs.  It is important for each of us to move out of our isolation and through our reticence to reach out to others for support. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.