My longtime friend Dan Brooks in Riverside reactivated his blog “We Will Go On” in 2016 and moved it to wewillgoon.com. Dan’s blog has the tagline:
Parkinsonism: Hard to Diagnose. Harder to live with.
A blog by a patient with Parkinsonism Plus Syndrome.
In 2006, Dan was diagnosed with multiple system atrophy (MSA), corticobasal syndrome (CBS), and progressive supranuclear palsy (PSP). As time went on, MSA became the most likely. It seems that CBS has come back into the picture, however.
Dan recently posted about the confusion over whether he has Parkinson’s Disease, CBS, and MSA. I’ve copied his post below.
Robin
————————-
www.wewillgoon.com/2017/03/confusion-over-parkinsons-contrasted.html
Confusion Over Parkinson’s Contrasted with CBS and MSA
by Dan Brooks
Saturday, March 4, 2017
I have quite often discussed with some of you in the family, and various friends, about the difference between Parkinson’s Disease and the Atypical Parkinsonian disorders. I am going to give you a few points to chew on, knowing you are the best ambassadors we have for spreading the word about these rarer forms of Parkinsonism.
Parkinsonism is a condition in which signs and symptoms of Parkinson’s appear in the patient’s disease. Even though the person may not have Parkinson’s Disease, they have a brain disorder that causes similarly appearing symptoms, including tremors, balance problems, stiffness, walking difficulty and cognitive changes.
Parkinsonism appears with Parkinson’s Plus syndromes such as Multiple System Atrophy, Corticobasal Syndrome and Progressive Supranuclear Palsy. Since I was first diagnosed in 2006, the neurologist I saw for ten years thought that my condition was one of these three. As time went on, Multiple System Atrophy became the most likely. All three of these conditions are determined to be “probable” in life, and are confirmed after death through a brain tissue study.
Even though I have Parkinsonism it is not Parkinson’s Disease in the simplest form because the disease process in my brain is more involved than in Parkinson’s. I have Corticobasal Syndrome (CBS), and it is uncertain if it would be alternatively considered Multiple System Atrophy (MSA). These have overlapping symptoms and are best described as rarer forms of Parkinson’s.
Has much changed? Not really, except I have more clarity and certainty of the degenerative brain disease that has taken so much from our lives in the Brooks family. We are fortunate to have this increased clarity because the neurologist I have been seeing of late is a Movement Disorder specialist, which is a doctor of Neurology who specializes in all things Parkinson’s and Parkinson’s-like. She saw a clear indication in the results of my DaT Scan which demonstrated that I have Parkinson’s Plus, not simply Parkinson’s Disease.
Parkinson’s Plus has long been the understanding of my condition. I wrote about this in my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER. The confusion arises because the word “Parkinson’s” appears in both descriptions of the diseases. Technically, they are different in that Parkinson’s Plus is a faster progressing disease and causes more disability sooner.
That is why I was unable to continue driving and had to retire at 51. I have difficulty walking with coordination and I struggle with choking on food and liquids. I also have digestive, urinary, heart rate, blood pressure regulation and body temperature issues. These are not visible to friends and family so what appears to be a better day, could be a day I am having trouble with my blood pressure or having great difficulty coughing after drinking liquids.
I also have very abnormal horizontal eye movements which are caused by a loss of neurons in the area of the brain that controls eye movement. At times I see double as a result.
I am so glad that you are interested and are trying to grow in your knowledge. MSA is a disease I have been identified with for 10 years or more. I have CBS, but if it were to turn out to be MSA at some point, that would be a very similar prognosis. My greatest concerns are pneumonia, breathing constriction, and urinary infections. I do not have idiopathic Parkinson’s, but I do have a form of Parkinsonism, and much of the research being done for P.D. will have a benefit and weight heavily on the potential for discoveries that relate to PSP, MSA and CBS syndromes. I will always identify with my fellow patients who have Parkinson’s Disease, and the support groups for Parkinson’s are virtually the only in person, brick and mortar groups we can attend anywhere near the Riverside, CA area. As always, thanks for reading! — Patient-Online