Deep Brain Stimulator Died!

I depend my DBS system (Deep Brain Stimulator) greatly.  It smooths out motor movement to some degree and helps preserve urinary function, swallowing mechanism, and keeps my body from being rigid and in pain.  

Last week I started noticing I could no longer stand up straight and my joints and muscles were aching and burning. I felt as though my head was spinning.  

If you have read my book, FURTHER ALONG, you know where the brain implants are located and the purpose they serve.  They generator in my chest is connected to these brain implants.  

In addition to my very curved, down facing posture, I was struggling to make my bladder muscles work and urinating has become very painful and, at times, nearly impossible.  My voice has been weak. 

Then it occurred to Karrie and I that we needed to check my generator power. We have a hand held device that we place over my generator, located beneath the skin on my upper chest. Karrie placed this over my generator and it indicated that it was no longer functional. 

We are in the process of working with my movement disorder neurologist to get surgery scheduled as soon as it is possible. This needs to be done by a neurosurgeon.  

In the meantime, I will just have to find a way not to let it depress me as the change or lack of stimulation can severely affect my basal ganglia function. This part of my brain is located in my midbrain, and can play havoc with my sense of well being.  Also, the stimulator going out has caused intractable hiccups that have continuously returned for 3 days straight.  They are very difficult to stop and the constant jerking of my abdomen is painful for my stomach G-tube.  

I would appreciate your thoughts and prayers as they will be of great help! 

 

Drawings by Mark M. Brooks

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

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