Monday, November 21, 2016

Generator Battery On the Fritz! Time to Replace

My three grown sons accompanied me at a great football game yesterday.  My team, the Los Angeles Rams, was stolen and moved to St. Louis 21 years ago.  Finally, the Rams are back in LA and I was determined, in spite of my disabilities, to go to a game with Daniel, Mark and Stephen.  They were so great and helped me find the right seating for my wheelchair and were able to sit in the rain, drink a beer and eat a hot dog together.  What a blessing! My great sons took such good care of me in and out of a stadium filled with 90,000 people and we enjoyed the
 game so much.

Stephen, Me, Mark (back), Daniel (Front Rt.)

Mark and I


The timing of this special occasion preceded by chance the sudden need for my generator for my DBS to be replaced.  I am scheduled for surgery on December 1, 2016.  It is a fairly simple procedure and will require only a few hours in the hospital.  The area in my chest where it is located will be opened up, the old one unplugged and the new one plugged in.  Then, the new generator will be placed in the scar formed pocket under my collarbone and plugged in to the connections to my two brain implants.  The area will be closed after determining if the unit is working.  The settings will be made according to my personal condition during this time.

I am seeing a new (to me) movement disorder specialist.  She is a neurologist with special training and experience beyond what a neurologist receives.  She deals with Parkinson's Disease and other diseases that have movement disorder problems similar to PD.  I do not have Parkinson's, as I am sure you know.  I do have a movement disorder which includes parkinsonism and other abnormal movements.  The accompanying autonomic failure has lead to my current diagnosis of a Parkinsonism Plus syndrome, such as Multiple System Atrophy.  PSP and CBD have also been considered.

Meanwhile, I am looking forward to my generator performance improving and thus my symptoms should also improve.  I have begun to have trouble with balance, falling and fine motor coordination resulting in trouble with tasks requiring accuracy with my hands.  Take care my friends!  -- Patient-Online

Friday, November 4, 2016

"My Degeneration" a Book by Parkinson's Patient & Professional Cartoonist

I was given a book, My Degeneration: A Journey Through Parkinson's, and I have found it inspiring. The author is Peter Dunlap-Shohl, a Parkinson's patient who was diagnosed in his early 40's while in the midst of a successful career.  Mr. Dunlap-Shohl was an editorial cartoonist for a major newspaper in Anchorage
Alaska. He is a tremendous artist and writer and this book is exceptional.  Allow me to explain.


He uses tongue-in-cheek humor, along with amusing satire to attract the reader.  The cartoon drawings reflect his personality and the angst that comes from loosing so many aspects of health that slowly box in the Parkinson's Patient, reducing their opportunities and the freedom to live as one wishes.

No one has found a better format or taken the time and careful employment of talent that Peter Dunlap-Shohl utilizes to bring these ideas together.  My Degeneration:  A Journey through Parkinson's, is a book that will not only help the patient to clarify the brain changes and resulting physical and mental challenges that will result, but is also very reassuring to the caregiver or family member most intimately involved in their loved one's degenerative process.  It is my intention to share this book with relatives outside of the immediate family and key friends who by their closeness will gain insight and understanding that could be lacking.  Often, it  is this lack of grasp of the breadth of symptoms and loss that brings about frustration and a sense of alienation for the patient.

Peter and I have been fellow bloggers regarding Parkinson's and other Atypical Parkinsonian syndromes for parts of the last decade.  I have appreciated his support, ideas and encouragement.  Today he inspired me to write more and get some skin back in the game of letting the world know what degenerative brain diseases like Parkinson's are all about.  You can read more on Peter Dunlop-Shohl's blog at: http://offandonakpdrag.blogspot.com/

My Degeneration: A Journey Through Parkinson's can be viewed or purchased at:

 https://www.amazon.com/My-Degeneration-Journey-Parkinsons-Medicine/dp/0271071028/ref=sr_1_1?s=books&ie=UTF8&qid=1478279304&sr=1-1&keywords=my+degeneration+a+journey+through+parkinson%27s

Congratulations on this fine publication, Peter, and thank you for inspiring us all! -- Patient-Online