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

Changes are Gradual in Some Cases of MSA

I am one of the fortunate ones.  I am still here! Some develop Multiple System Atrophy and they are only able to live a few years.  This grieves me to lose friends who are diagnosed and immediately are incapacitated and go down hill.  I am more typical,with a course of greater than 10 years.  This a great advantage for me to live to the fullest for the time I have in this beautiful life.  When I was diagnosed ten years ago, I was concerned that aspiration pneumonia, bladder infections, heart rate issue, falling or breathing difficulty, all of which I deal with daily, will be what I succumb to in the first 7 or 8 years.

This would not be the case, a fact about which I credit my fitness as an athlete when I was a younger man, my maintaining my abilities through singing and playing instruments, the time I spend writing and communicating, and having a very effective caregiver in my home.  Of course, I am speaking of my lovely wife who also cares for my medical needs, such as my administration of medications. Finally, I know Deep Brain Stimulation surgery has helped lengthen my life and improved some of my symptomatic issues. 

I am still here and I am full of joy for life.  I didn't know if I would make it this far, but now I feel that there is so much to do as a grandfather, husband, dad, musician, church member, friend and participant in support groups.  Thanks for your support and prayers through the years! -- Dan

My Son Mark and I Performing at Church in 2015

Walking Is Increasingly Hard this Week

Note: Our friend Lori is home after a successful hip replacement surgery.  We pray that her recovery will be smooth and timely.  Our best to you and Pastor Brad!

Multiple System Atrophy is a syndrome which causes such a variety of issues that as a patient you will forget the difficulty of one serious symptom while several others have risen to the fore. I live with balance and walking/gait difficulty always, and have since this came on just over 10 years ago.  Due to blood pressure being low (orthostatic hypotension) makes it hard to rise and begin to stride because of either a grey out moment or weakness in muscles.  Once I going, my balance due to brain changes in the cerebellum contributes to the struggle to walk with much balance, and my pace is very slow due to parkinsonism as I attempt to go get the mail from the mailbox or take the trash to the garage.  Even with a cane or walker, it is a rocky road.

These last several days, it has been worse.  I am stooped over more and moving very slowly, with an exaggerated shuffling gait.  I went in the grocery store with my wife and found the size suggests a wheelchair rather than a walker next time.  I may get my next DBS adjustment and find that it brings improvement in this area.  It is hard to say, but often the electrical stimulation that is continuously flowing to both sides of my brain, when targeted to improve a symptom can actually do something close to that!  Always Hope,  Dan

Pain in MSA

Pain is a part of Multiple System Atrophy.  Does that come as a surprise?  The same is true of Parkinson's Disease.  I have stiffness in my arms, legs, feet and hands.  My neck is moving downward, slowly, over the years growing closer to my chest.  When I walk I feel the stiffness and cramping of my neck and upper back as my shoulders and head pull down involuntarily. The medicine Gabapentin is a big help in treating pain.  It relieves nerve pain, which is generated by the rigidity of parkinsonism that is a part of MSA. 

Dystonia is a related condition that causes involuntary contractions, postures and tremors, such as my head which bobs or shakes most of the day and night.  My Deep Brain Implants and generator work together to reduce some of this stiffness and twisting movements, along with the Sinemet which is a wonder drug that is a must for all Parkinson's patients, along with PSP and MSA patients who have Parkinsonian issues along with their central symptom issues.  So, yes, pain is an issue and those who care for MSA victims need to know this and keep it in mind at all times.  In closing, thank you to my spouse, Karrie, and all caregivers that make such a difference in alleviating pain and in lengthening our lives!  -- Dan

Who are My Readers?

Hey Folks who are reading... I don't yet know who you are! Let me know if you get a chance. 

I am thinking about one of our dear friends-- Lori.  She is our former pastor's (and current friend!) wife.  She is having hip replacement surgery today.  Please say a prayer for her.  She and Pastor Brad have done as much for us during this struggle as anyone these last ten years.  They have supported Parkinson's research, contributed to my recording costs and have been very special in our lives.

Have a great day!  -- Dan

Moving Forward with MSA/Shy Drager

So much to consider each and every day.  I am having some fairly good success with my Deep Brain Stimulation system.  It is the overall improvement and health DBS enhances that I feel most thankful for.  My wife and I feel that I am getting a slower progression of my brain disease, thus my health is holding out longer than expected-- all because of these brain implants and regulator in my chest.  I was diagnosed with a Parkinsonian-Plus condition, possibly PSP or Shy Drager, 10 years ago next month! Wow! I am still here and still enjoying life.  I find being a grandfather to my two granddaughters to be the greatest thing of all about living on.  Also, enjoying retirement with my best friend and my spouse, who doubles as a great caregiver is a fantastic experience.

I am able to sing and play my mandolins and guitars.  I enjoy playing in the church band and singing with my friend at a nearby nursing home.  Loads to be thankful for!  I am still struggling daily with the usual dysfunctions caused by MSA/Shy Drager, but I can fight through it.  Walking with a cane or walker, putting thickener in my liquids, eating slowly and deliberately to avoid choking, taking my many medications on time (thanks to my spouse!) and watching out for slippery areas or things to trip on to avoid falling are all things I can work with if I keep a good attitude.

I am trying to write this blog to show that I have risen from the ashes of pain and disappointment to give back to all those who share so much with me.  Have a great day.  -- Dan

Four Years Since Deep Brain Stimulation Surgery

It has been four years since I underwent DBS surgery.   Though I have Multiple System Atrophy, I was a good candidate as deemed by my doctors.  It has been successful and I have benefited from it. 

It was quite a challenge to face brain surgery and the possible complications, not to mention the range of outcomes from success to failure that may have resulted from it.  I am glad to say that it was a big success! 

Did it change the fact that I have a neurodegenerative disease that will continue to progress?  No, it did not cure me, but this medical simulator and two implants in my brain, helps me move better and reduces unwanted jerky movements and tremors.  Also, it seems to be lengthening my life.  What more could I ask for? 

-- Dan

Bernice Bowers -- Long Time Friend of CurePSP and Shydrager Support Group

I was deeply saddened to learn yesterday that Mrs. Bernice Bowers of Milford passed away in October 2015.  Somehow this news had slipped by without our knowing in the Shydrager/MSA forum.  Bernice was a long suffering caregiver and spouse of a wonderful man named Ken Bowers, a fire fighter who was treated for a Parkinson's Plus syndrome beginning in 1987, and was eventually diagnosed with Progressive Supranuclear Palsy in 1995. 

Ken was found to actually have had MSA posthumously, made clear by the study of his brain, which was generously donated by Bernice after his death in 2000.  Bernice remained active for over a decade in the Shydrager and PSP online forums.  She participated in the first few years of the Cure PSP monthly online support group facilitated by Gary Rose and Vera James.  I personally had much contact with Bernice online and she provided encouragement and friendship throughout the confusion and disappointment of the early years of this struggle for me.  

I am certain there were many others for whom Bernice did much of the same. Bernice was a positive individual with much faith and gave her time to church and community activities and caring for friends and family.  She developed breast cancer several years ago and it had been treated successfully.  This past year it returned and she passed as a result.  Bernice wrote a poem called, "The Golden Cord" which I published in my book I WILL GO ON, along with much of Kenneth and Bernice Bowers' story of his struggle with Multiple System Atrophy.  See her online obituary here. 

We are thankful for Bernice M. Bowers and her generous support for the patients and caregivers facing MSA, PSP, CBD, DLB and other Parkinson's Plus Syndromes. She was a true friend and advocate, and will be greatly missed.  Our sympathies and prayers are with her family and friends.    -- Dan