Grace as the New Year Begins

In a few days, we will enter a brand new calendar year.  There is nothing magic about putting a new 2017 calendar on the wall and there certainly isn't any certainty that we will change as we might desire to do.  However, I do believe these cultural landmarks and measuring sticks do help us to organize the spiritual and emotional sides of our lives by reminding us to consider who we are and if we are true to our purposes as we live each day.

I am reminded that God is the center of all that I do.  When I forget that, I get off course and end up tossed and turned by the churning seas of trouble.  Looking to Him, who is my creator, and He who leads me in the direction I take and how I respond to the good things in my life and the difficulties, as well.

Look back over your life and consider the big picture -- hasn't God been there all the while, opening doors, bringing comfort, guiding and directing you and bolstering your courage when you can't see how to go on?  I can't help but rejoice at the end of this year for the many ways God touches our lives and His graciousness toward me and my loved ones-- family and friends!

I thank God above for our sons, our daughters in law, our granddaughters, our parents-- all of which are living-- and our brothers and sisters in our nuclear families.  So many blessings in our church, our health care, our doctors, our Pastors, our many friends and all of the neighbors and community we are blessed to come in contact with!  God has brought us a new Movement Disorder Specialist, a wonderful Primary Care Doctor and a very dedicated new Neurologist at our clinic.  Our Neurosurgeon did such a great job on my surgery to implant my new DBS device in my chest.  The healing has been so smooth!

I think over my life and the decision I made to respond to His call and the guidance I received in  my early years in Lakewood, CA as a high schooler-Christian from my Pastor, who led our youth group (and me) in the ways of Jesus. He also taught me so many practical things about life-- camping, fishing, tennis, social justice and walking with God in Christ.

Yesterday, we received a call from this very high school Pastor (who was the Associate Minister of our church) whom I haven't seen in 40 years!  He and his wife, who is also my friend, are coming to visit us for coffee next week. We are so looking forward to seeing them. We will have the chance to thank them for the influence their lives had on my life, and indirectly, on those of my children.

God has been good.  He has been faithful. Not everything goes as expected, but He is with us, holding us through it all.

In II Corinthians 7:10, Paul writes:

"Godly sorrow brings repentance that leads to salvation and leaves no regret..."

I know that we suffer but not in proportion to how Christ has suffered on our behalf.  Through it all, we can say, "To God Be the Glory, for the things He has done!  All that I am and ever hope to be: I owe it all to thee."  -- Andre Crouch  

Below is a video of this very song that I recorded in approximately 2010, when my hands and voice weren't as affected by Parkinsonism-Plus.

 

 Happy New Year, my friends! Thanks for your much support and prayers.  -- Dan

35th Anniversary and Peace

As Christmas approaches, I want to wish each of you happy holidays, in whatever way you and your family express them.

Karrie and I are celebrating our 35th anniversary December 19th.  I am so grateful to her and so blessed to be her husband.  She has brought me so much joy and happiness, along with our three wonderful sons.  Her caregiving each day and all the hard work she does and the worrying she has to go through each day are overwhelming.  Thank you, sweetheart!

Karrie at the Back Bay in Los Osos, Home of our Dearly Departed Cousin, Don Young.

At this time, I grateful for the successful surgery and my new generator, sending electricity to my brain to block faulty signals.  I am thankful that we have a new doctor, a great Movement Disorder Specialist at Loma Linda.  I may only see her as long as the insurance allows, but so far I have been there twice.

I want to say that I realized that this is a great time of year to tell those you have caused hurt or misunderstanding with, that you are sorry.  I have so many faults and I get so full of pride. I regret that I don't always do my best in responding to others.  We need peace within families, communities, churches, and even countries.

Humility and love could help our country as we see changes in our governance and expressions of pride and the lust for power.  God help us to look within our own hearts, individually and collectively, and repent of the attitudes that cause pain and division.  This is what Christmas is all about.  The birth of a humble King coming to bring a servant's message to a world clamoring for victory and dominance.  We recall the words of Isaiah where he tells of the coming Christ,

"They will beat their swords into plowshares and their spears into pruning hooks. Nation will not take up sword against nation, nor will they train for war anymore."  Isaiah 2:4

Let us seek to make peace as individuals and work together as a nation to do the things that are best for all people, and not seek to win, but rather to be whole and act in a manner which benefits others, as well as ourselves. -- Patient-Online

Recovery from Surgery Hard Due to Respiratory Infection

Well, we got home Thursday, December 1, 2016, feeling great and everything was looking good!  The complications began the next day, Friday, December 2, 2016, when I suddenly began to get the cough that Karrie had been getting for a few days prior to surgery.  I usually don't get the things she does, and we both got our flu shots early in September, so I wasn't expecting anything.

As I write this blog entry... feeling a bit stronger and getting a break from coughing.

That evening I got the chills and within 15 minutes, my temperature began to rise.  Mind you, I have run a point low at 97.4 since the Shy Drager symptoms began years ago.  When I got up to 102.2, I knew it was as severe as 103.3 would be for the average person.  The chills increased, the cough went deep into my lungs and I began to have fluid getting stuck in my airways.  At times that night we weighed going to emergency to make sure I didn't lose my breathing freedom from all of the gunk building up.  It was scary!

It was a long tough road.  I was in bed for two and a half days and was awake 5-6 hours of that time.  Remember, Karrie wasn't much better.  She had a lower but steady temperature, having had her higher temperatures earlier in the week.

Meanwhile, the wound was a good 5-inch gash and healing very well.  I do not have much pain to speak of now, and the cough and aches in my body are still present, but my temperature is back in the low 97's, which is my normal reading since Shy Drager.

Looking back, December 1, 2016 wasn't a great day to get the generator replaced because the weather was the coldest in the entire fall and it was in the 60's in the house without heating it.  This weather condition made it the worst time to have a cold, let alone surgery to replace my generator.  Being one who chokes on foods and fluids several times a day, I feared the worst-- a bad case of pneumonia-- as I had earlier this year in June.  The antibiotics that my neurosurgeon prescribed were effective and I believed helped me fight off the worst.

Saturday, December 10, 2016

I hadn't been out of the house since the surgery and just returned from a car ride and drive through lunch at Bakers.  Karrie and I ate it in the car and I felt a bit more normal for having been out in the world.

The respiratory condition is still working itself out with coughing and aches, but I can tell we are out of the woods!  I can see myself recovering.

The new generator has had an immediate effect.  My last one was worn out.  I hadn't realized it, but looking back I was: a) falling hard a few times in the past 4-6 weeks, b) choking on foods and liquids daily (dysphagia), c) biting my tongue, cheek and lips at each and every meal!, and, d) just a lot more need for my walker and wheelchair to get around because of the poor coordination of my limbs.  This change was needed.

I am swallowing much, much better and chomping on my face and tongue so, so much less!  I had sores all over my mouth and sometimes I would get so bewildered after yet another uncoordinated bite out of my lower lip that I could either cry or laugh forever! Such an improvement.  I am getting around better and using my walker in the home at night only, but not during the daytime hours.

The only negative may be that my speech has slowed this last week (dysarthria) and I am beginning to wonder if it is a side effect or just the cognitive slowing that I am experiencing.  It sounds to Karrie (and myself) like slow and drawn out words and phrases.  It feels to me like it is getting the words from the thought to my speech apparatus, but I will have to ask the movement disorder specialist/neurologist about it when we return to see her on Monday.

Thanks for all the support and your prayers!  -- Dan

Late Robin Williams had Lewy Body Dementia

I soberly read with great interest a story about Robin Williams that explained that his Parkinson's Disease condition was actually a Parkinson's Plus syndrome called Lewy Body Dementia.  Lewy bodies (named for Lewy who originally identified them) are protein clumps that form in the motor center (basal ganglia) in Parkinson's Disease thus destroying cells that control normal movements.  In Lewy Body Dementia these clumps are also found in the cortical brain tissue where thinking, planning and emotions occur.

Robin's condition would include the tradtional P.D. symptoms: slow movements, balance trouble and tremors.  Because his diagnosis was ultimately LBD, he also would have suffered from: hallucinations, delusions, executive function issues, depression and severe mood troubles.  Read more about Mr. Williams' condition here.

What a great talent and such a highly intelligent person.  After he died, I recorded a song in the form of a video to reflect the way Robin's last years, weeks and days may have been like to experience.  --Patient-Online

Successful Implant of Brain Pacemaker

Today I was in the OR at Riverside Community Hospital where my fantastic neurosurgeon successfully removed and replaced the generator/stimulator that works in concert with my two brain implants.  This treatment has been successful and surely has extended my life and provided better mobility for me.  4 years ago, I used a wheelchair much more of the time and had more trouble speaking.

Today, I had  a very smooth surgical process and my esteemed brain surgeon completed the surgery and reset my custom settings for my symptoms.  Sending this electricity into my brain center where motor functions are governed,  blocks bad signals so the good ones can be carried by my nervous system to my body's muscles and organs in order to help improve my quality of life dramatically.  Here is a picture of the surgical site:

Inside this 4 inch incision is a scarred pocket where the previous generator was implanted 4.5 years ago.  This is the day of my replacement surgery.  From this, two cables move up my neck (under skin) and up across my head.  Two implant probes dive down through my brain tissue about 4.5 inches. 

We are home, sore and tired, but very grateful and glad to have this behind us! -- Dan

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

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