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

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

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