Where Does the MSA, PSP or CBD patient fit?

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