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

"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

I Lost a Friend - Don Young Co-Founder National Resophonic Guitar

My friend and 1st cousin, Don Young has passed. Don had organ failure after an ulcer forced him to the emergency room. He had cardiac arrest at some point, compromising his brain function. He was allowed to go peacefully June 15, 2016, at 5:35 p.m.

As his close friend and relative, I can attest to his amazing kindness and humanity.  After my diagnosis in 2006, he arranged for me to receive one of his prized guitars and had it mailed to me.  It has been a source of great joy and musical exploration.  During these ten years of dealing with MSA, he has been one of my shoulders to lean on in difficult times, calling me at least every month.  Though we were 300 miles apart, it was just a short day's drive to go up to visit and talk guitars, fishing and history-- three of his favorite topics.

Don and his friend, MacGregor Gains, started National Reso-phonic Guitars in the late 1980's (or there abouts) and they brought back the popularity of manufacturing and hand crafting Steel and Wood body resonator guitars.

Don learned this craft working for Dobro guitars in Huntington Beach as a young man in his 20's. He was the floor supervisor when it ended.

Don moved to San Luis Obispo in approximately 1989 and went back to the old designs of Nationals that had been made in the 20's and 30's. He brought back the name National and added National Reso-Phonic as a brand. In the last ten years, they created Smith and Young dobro-type instruments that gained popularity.

Don and MacGregor's company made some beautiful resonator mandolins, as many of you know. Don was a very good musician. When we were young, we would jam as he added fiddle, mandolin, acoustic guitar and his specialty, Hawaiian slide guitar, which he was incredible at. He was a good singer and loved old time music, early gospel and anything from the 20's, 30's and 40's, including blues.

I wanted you all that read my blog to know that we lost a great soul and also a friend to musicians around the world. He will be greatly missed. Rest In Peace Don!

A Friend From the Start -- Going Home

In the weeks since I posted several events and changes have occurred in my life, as I am sure is true for all of you.  In particular, I was deeply saddened to learn of the death of my long time friend Dr. Nick Ferguson, whom I worked under for many years during my career as a school administrator.  Dr. Ferguson and I worked together in two districts, and he was our Superintendent in an Inland district while I served as Assistant Superintendent of Human Resources.  Dr. Nick was with me when I was diagnosed and learned I would need to retire.  His support and friendship through this difficult time will never be forgotten by me or my loved ones.

Dr. Ferguson went home after a very difficult battle with Pancreatic Cancer.  I am at a loss and will dearly miss Nick.  He was a caring and dedicated educator and manager.  He was an even better friend.  God bless his memory and may the Lord be with his wife and family.

I have been fighting a urinary tract infection, which I did get over with antibiotics.  It is caused by urinary retention, the result of spasms in my bladder resulting from Multiple System Atrophy. Subsequently, I have developed pneumonia as a result of a cough and particles of food and liquids that have entered my lungs due to swallowing issues caused by MSA.

I seem to be coming out of it.  I need to be careful so that these things do not recur.  I appreciate your reading and any comments you might make on my page.  Take care! -- Dan

Music, Mandolin, Medicine, and Musing

I grew up playing the guitar and became a serious performer in high school, winning the school-wide talent show and traveling with the city-wide program that went to each high school (sponsored by the major newspaper in the region, the Press Telegram).  Eventually, I became a songwriter, converting full-time to contemporary Christian music during my college years in the seventies.  Over the many years I showed an affinity for the blues, doing Elvis impressions and playing Buddy Holly songs at church parties and school events.

After being diagnosed in 2006, I wrote an album and recorded the songs for "I Will Go On".  That album was followed up by another retrospective of my music life, "Curtain Call", produced by my son and his best friend.  I joined the church band led by a friend and provided instrumental and vocal support.

In addition, Pastor Brad frequently requested that I sing a solo which tied in to his sermon topic.  I sang many songs over a 12-year period until he retired.  I miss singing those songs for him as I finger-picked on one of my acoustic guitars. 

Finally, I realized my calling to play the blues.  I discovered the joy of ripping the electric neck on a six string plugged into a tube amp.  I loved that!  I began to grow in my skill and became a competent blues man, with a lot to learn for years to come. More than anything, it provided an outlet for the angst and feelings of despair that come from realizing you have a degenerative brain disease.  I let it all out singing songs like, "Stormy Monday" or "The Sky is Crying" and walk away from my ax feeling a joy I can't explain.

I pulled our old Gibson A style mandolin out of the case a few years ago.  I began to work on a few chords and our worship leader said bring it and play on a few songs at church.  It worked, though I was rudimentary.  I was hooked!  I started to really work on the mandolin, learning completely different chord shapes, positions and scales.  The mandolin is a magical instrument!  It has a sweet high sound with double courses of strings tuned exactly to the pitch of a violin, but played with a pick rather than bow.  I know:  I played violin as a boy for two years, making second chair in the orchestra.

Now, I am still an entertainer.  Twice each month we visit Villa Health Care Center nursing home, where  my friend and I play and sing for the patients, visitors and staff.  Now, I have a whole new sound and an instrument to add to my joy of sharing music and experiencing it at home as well.  The mandolin has taken hold.  The patterns and constant learning experience has to be lengthening the time that my brain is effective in the cerebral cortex.

There is an often repeated story about a Catholic Sister who had Alzheimer's disease for years and it had not shown up.  She was playing the piano and writing music diligently.  When she died they studied her brain.  Sure enough, the tau (protein) tangles were rampant in her brain tissue, so why had no one noticed she had full blown dementia?  Apparently, her musicianship and regular practice of playing of the piano and writing music had done wonders in preserving her brain function, creating pathways to compensate for the onslaught of her terrible disease.

My obsession with the mandolin will be with me the rest of my life, along with my constant love for my acoustic guitars, my love of entertaining people, and my ax plugged into my tube amp playing the blues.  -- Dan

Deep Brain Generator Tune Up

We enjoyed our monthly Parkinson's Support Group meeting early this week.  There was a discussion regarding DBS pacemaker/generator settings and it happened to be the night before I was scheduled to go in and have our experts tune mine up. 

I have great faith in my brain surgeon and his staff.  A highly skilled and talented person in that office made some adjustments to my pacemaker that controls the probes in each side of my brain, placed through surgery adjacent to my motor center or basil ganglia.  So far, I am just adjusting and getting used to the settings.  Usually, it will be a week before I am going along and not aware of the changes.  I think my hand is a bit slower on the picking hand so I am anxious to see how that goes.

We visited our friends at a local nursing home today and learned that a patient we have sung for the last three years had passed.  His faithful partner, Teresa, came to visit us and let us know the sad news.  Nick had Parkinson's for 30 years.  He had developed severe contractions in his limbs, rendering his hands of little use and was unable to walk.  He lost a lot of weight because he could not eat/swallow any longer. 

He always showed enthusiasm for Les and I as we played and sang.  His favorites were Sweet Caroline and The Gambler.  He is free from Parkinson's, but losing him is not an easy adjustment. We had these dog-on degenerative brain diseases in common.  I felt for him and always looked for he and his wife each time we played.   He was such a warm and encouraging face!  I loved his Dodger shirt and hat.  Rest in Peace, Nick (Joseph)! -- Dan

Ten Years On

After ten years my perspective regarding living with a movement disorder such as MSA has become less subjective and knee-jerk, but rather objectively clear and concrete.  Does that make sense?  There have been so many stages, including plateaus filled with purpose, valleys of despair, and wide plains of empty longing for the way I once was (oh, brother is that flowery or what?).  You are probably among the dozens of people that have so closely followed my journey, so you can likely understand the meaning of my words, though maybe somewhat vague if not rambling.

Today, I see clearly that my life is a gift and that the physical and mental struggles I bring with me through this scramble through my time on earth are just part of the whole picture. The joy of life comes through if it persists through all the loses, changes and realizations that come with learning to accept the disappointments along with life's surprising graces. What a blessed person I am, and each of us can be with this perspective.

I had great talk during a breakfast out with someone in my extended family yesterday and I sensed that they had gained a lot of insight into what I am going through, and their interest had grown.  By this I mean they were wanting to be able to clarify those misunderstood aspects of Multiple System Atrophy.  They expressed how perplexing it is when others do not understanding the difference between the more commonly understood Parkinson's Disease and the complexities and seriousness of MSA (obviously, Parkinson's is not less serious, just different). It was, in this person's mind, as though "they just think of it simply as the common form of Parkinson's Disease."  "What is that again?  The name of the disorder?" they clarified.  I stated "Multiple System Atrophy" as they wrote it down.  I felt so gratified that there had developed such acceptance and a solid supportive interest.  There was a passion that accompanied the request for the right words.

I went home and called Vera James, our MSA patient coordinator who works with us and answers the hotline representing the MSA Coalition.  She will be sending me some great leaflets that give a thorough but brief explanation of the symptoms and things to watch for that define the struggles of this diagnosis.  Write me a comment and/or an email and I will send one to you.  You can always check this link to learn more about MSA and our Coalition. -- Dan