Karrie looks out over the Back Bay in Los Osos. Without her I would not be able to live at home. |
I have been an outlier for years. It is the nature of the beast. I have an Atypical Parkinsonian Disorder, namely Corticobasal Syndrome with Multiple System Atrophy. These syndromes are so similar to one another that they can be paired in my brain, and are hard to tell a part in another case where it would be considered one or the other. On this site I have defined and summarized these syndromes, so this post will not consider those questions.
The issue I am discussing today is support. Support groups are a major factor in seeking support and education in a group where trust is established and fostered by the leaders and group members at large.
Let's take a few minutes and step back to look at my diagnostic history. Those who have kept up with this blog are aware that "Dr. N" was my original neurologist who diagnosed me with a Parkinson's Plus disorder. He conducted tests and examined me, concluding that what I had was "So much more than Parkinson's Disease." That was in February 2006. He said Progressive Supranuclear Palsy or Shy Drager were the likely diagnoses. Over the years he sharpened the focus somewhat, but eventually he decided my case was unique enough that Parkinson's Plus was the most closely defined he could confidently label my case. In 2012, Dr. N referred me to "Dr. S", who conducted Deep Brain Stimulation Brain Surgery in order to make two implants in my brain and one in my chest. This treatment, though risky and hard to undergo, was a success in the way it has increased my overall health, lengthening my life. This surgery was not a cure and is still benefiting me, though less and less over time.
Three years ago, I was fortunate to be referred to neurology at a respected clinic near our home and I was paired with a movement disorder specialist. She ran tests, including DAT and PET scans, along with video taping my condition as I walked, moved my limbs and eyes. She spent a great deal of time with us and we also met with a team of doctors who entered the exam room and contributed their opinions.
"Dr. M" determined that what I have is Corticobasal Syndrome with Multiple System Atrophy. I have a very long list of symptoms, which, again, are well covered on this blog other places. Among those symptoms are several movement issues that fall under the description of parkinsonism. Parkinsonism describes symptoms that are found in Parkinson's Disease-- walking trouble, shaking, balance problems and slow movements. Because I have parkinsonism, along with autonomic disorders, fronto temporal issues, neurologically based eye aiming struggles and swallowing issues that cause pneumonia, I have always tended to gather with Parkinson's Disease patients. Parkinson's Disease affects 1% of the population over 60 years old. Atypical parkinsonian syndromes are rare and only represent 3% of the total Parkinson's Disease population. The size of the group that is represented by PD means that there are Support Groups available in great prevalence.
Karrie and I were attending a Parkinson's Disease support group in Orange County as early as January 2006. We enjoyed that group for a year and were recruited by the Riverside Parkinson's Support Group in November 2006. We joined that group, stating from the beginning that I had a different disorder that shared some of the same symptoms. We have developed many friendships in the RPSG over these 12-plus years, and Karrie and I led the group for most of four years between 2007-2011. After all this time, it has become clear that my Atypical Parkinsonian disorder is not relevant enough to the needs of the patients, caregivers and leaders that are found in that group. We love and care for these folks and their leaders, but feel that it is best that we not attend the sessions knowing that my diseases, which have some overlap with Parkinson's but are arguably faster progressing and more life threatening in the immediate sense, are frightening to the general group.
This Support Group issue is not peculiar to me, but is a universal problem that needs to be addressed by the Movement Disorder and Neurodegenerative Brain Disease community. I have been fortunate to be welcomed and cared for by the Orange County group we initially joined, and grateful for all the years that we attended and supported the Riverside group. We have been involved in online groups concurrently such as CurePSP, MSA Coalition, Brain Support Network, and a number of other organizations. With these, we have had the chance to participate in online chats, but no face to face meetings. There was a movement that Vera James, and Lorreta Mazorra provided leadership for as groups were gathered in Los Angeles at UCLA and in Orange County at UCI. Robin Riddle of the Brain Support Network has organized an atypical parkinsonian syndrome support group in the San Francisco Bay area and she has made a number of us outside of that region honorary members.
I couldn't be more thankful to have had the opportunity to know so many of the people in these groups and so many have unselfishly listened, provided resources and taken time to voluntarily support families like ours, with a rare disease that overlaps somewhat with Parkinson's.
The point of this post is that those of us with Corticobasal Syndrome, Multiple System Atrophy, Progressive Supranuclear Palsy and Lewy Body Dementia are not frequently able to find a group in which we fit. Typically, it is helpful if the Parkinson's Disease Support groups are able to recognize the reality that a small but important percentage of the PD support group participants will eventually be diagnosed with an atypical parkinsonian disorder. It is because of this fact, that years ago I would lead discussions at the Riverside PSG in order to inform the patients, caregivers and their families about the signs of such a diagnosis so they would be able to recognize the onset of such a syndrome.
I am an outlier as a patient that does not specifically have Parkinson's Disease. There are people throughout the US and across the world that have this same distinction. All of us could need support groups, if we choose to avail ourselves of them. I am advocating for more atypical parkinsonian groups to be formed within a reasonable driving distance so that patients and caregivers are able to support each other and learn from one another's experiences. When this can't be accomplished, Parkinson's Disease groups need to be better informed about the facts concerning MSA, CBS, PSP, and LBD and open their doors to theses conditions. All atypical parkinsonian patients will benefit, as will Parkinson's Disease patients and their families. -- Patient-Online
4 comments:
Well hello my dear friend Dan. What an interesting article. I thought I would just post to add another dimension. As you know I have been running a support group for about 5 years now (where has that time gone?) after my Mom’s passing from PSP. anyway the group started out as a group for PSP. After a while because of the similarities of these rare diseases CUREPSP decided the groups should include persons with MSA and CBD. Even that has change the complexion of the group. Most of the people coming now are afflicted with MSA and the one person whose husband has PSP and who has been faithfully coming for almost two years now has expressed frustration that there are so few people coming who have PSP.
Sounds like you have done a very good thing to bring this to light. Of course one obvious solution for lack of a better word is more groups. Then again since these are so rare is there even enough people out there?
Since I have a captive audience any thoughts on how to get the word out about our groups? Very difficult....
Well take care my friend.... you and your family are so often in my thoughts. I will never forget what you did for my mom....
Mary
Hi Mary Meagher, One of the best comments ever! Your teaching background and specialist in your field skills really show in your writing, Mary. I want you to know that since I wrote this I had a change of heart and went back to the local PD group. We have so many friends there, including the leader, that I missed them. I know they accept me as a person, and that is what really matters. My syndromes, MSA and CBD are confusing with all the medical information, but it is nice that there are people with a movement disorder there. Last meeting another individual with a Parkinsonism Plus syndrome attended and I was able to connect briefly with him, which was inspiring. I now have a friend within 85 miles who also has CBD and he is happy with his local PD group. Your willingness to broaden the membership in yours to include the big 3 syndromes is appreciated, I am sure, and I am happy to hear of your leadership in this way. Best always our friend! Dan
Dear FRIEND! I can't believe that your email got caught in a horrible mess of a computer crash attempt to reconstruct my emails. I just found your email today.
It's good to see you are still writing. I know exactly what you are sharing in this post. I fit quite well in the PD community until my symptoms took a weird turn. And yes, you don't want to scare folks who unconsciously see us as their ultimate fate.
My own case has stayed surprisingly invisible, which has its own challenges. Only my close family really understands how much trouble I have with things. Really only my hubby truly understands my limitations and mental problems.
If anyone can move people to create appropriate community groups for the "PLUS" folks - it will be YOU.
Love you Dan!
Rosemary
Dear Rosemary, My fellow patient and blogger all these years! Thank you for taking the time to write back. I am so grateful as you have always done so. When I started blogging in 2006 you already had a blog and before anyone else in the MSA and Parkinson's community that I knew of at the time. You are always such an encouragement to others. I wish you all the best and am so grateful that we are writing on and living on, as well. Greetings to your kind husband. Yours truly, Dan
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