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