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