The Encouragement of Friends

Since my last post, I have received a number of comforting and uplifting comments that we have enjoyed reading. Thank you for your responses.  I read each one and am grateful for the sincere words of support, prayers, appreciation and love that are represented in your expressions.

I wanted to highlight a friend whose poems I have posted in the past.  He writes to inspire and remind others of the power that comes from faith and prayer in walking a difficult path.  His name is Gary Edwards, whom I have know since I was 13 and he 14.  We met in Sunday school class for junior high students.  We went on to have a lifelong friendship.  Through high school and beyond into our late teens we often performed folk-rock music together centered around the gospel message.  We always enjoyed sharing music and visiting various youth events, churches and skilled nursing homes to share our songs.  

Gary's wife Susan, was also from our local church, coming later in the high school years.  She too is an artist, of the visual type, and paints wonderfully thoughtful and inspiring works that are displayed in their Dallas area home. In addition, she paints on custom greeting cards that she sends to lift others hearts.

Gary Edwards Calling to Say Hi

 

Gary has been in close contact with me the last 10 years, and during my medical struggles has been one to share an encouraging word to build up my sense of hope and trust in God's strength in my weakest times.  As a way to communicate those thoughts with me, he has written some poems that I would like to post for you to enjoy and appreciate.  Maybe you will find them a blessing for you, too, as you read and contemplate their messages.

This is one that Gary wrote for my 68th birthday, as I was in the midst of my cancer battle:

Fashioned by the Master

 

Fashioned by the master

With a stroke of his hand

Final touches of your potter

As you live at his command

 

Empowered for his service

The battles are for real

The molding has been accomplished

On his perfect potter's wheel 

 

The color of your soul painted

In a thousand different ways

It won't be bright until you shine at night

And he fires on his glaze

 

Your body tells you one thing

Your hope of glory's real

The fragile clay has been hardened

So don't react to what you feel

 

As you speak to your potter

As you say, "I don't have the faith,"

He will guide and hide you

In an overflow that's safe

 

His grace has empowered you

As the potter's kiln is done

His strength made perfect in weakness

This birthday battle is won.

 

A poem for Dan, from Jesus, through the hand of Gary

Happy Birthday 

Here's another that Gary and Susan mailed to me in a greeting card. I had just had my kidney removed three days earlier.

Dan, Standing in Your Dad's Legacy

 

Dan, you are not like others in their plight,

Whose health problems burden them every night.

For in His life, God's grace takes hold,

And through His love, you're in his fold.

 

While fighting health battles O so long, 

Your strength in weakness is His song,

With tender mercy, God sets you free,

Through Jesus Christ, your strength is He.

 

Many ailments affect body and mind, 

But you a different road did find,

With every step, blessings you receive,

His grace your guide, and comfort believe.

 

Doctors' proclamations, like shadows cast,

But through his grace, you're free at last,

In his embrace, your spirit soars above,

His boundless grace, you truly love.

 

So let your heart be filled with gratitude,

For God's great mercy and His fortitude.

You've been given a journey all your own,

In his compassion, a new seed has grown.

 

So embrace the path before you laid, 

For through His grace, your burdens fade,

Your dad's legacy, a strength you've gained,

With every victory, His glory is proclaimed.

 

In His eternal love, you'll find release, 

No longer bound, In His perfect peace,

Rejoice, dear Dan, in this blessed call,

For in His hands, He gives you all...

 

By Gary Edwards and your Master Craftsman

Gary added:

"So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today gone tomorrow. But the things we can't see now will last forever." 

2 Corinthians 4:16-18 The Message Bible 

These poems are used by permission and are written by Gary L. Edwards.

My deepest gratitude to Gary and Susan for their friendship with Karrie and I, and for the love and care these poems represent. --Dan

 

 

Latest News and Stomach Surgery

It has been an exciting summer as we have also turned to fall.  I went through the change of trach tube from uncuffed to cuffed, with the aim of using the ventilator each night as I sleep.  This process has gone off without much of any hitch!  The ventilator paired with my Portex size 8 cuffed trach tube has worked out beautifully. I am really benefiting from the ventilator.  I sleep much more deeply, wake for shorter periods, and most importantly, breath so much better with the ventilator attached to my tracheostomy tube.  

Our second book, FURTHER ALONG, got off the starting line with a burst of online sales, thanks to all of you.  I have recouped about half of our original expense in publishing, although I haven’t been happy with some of the minor errors not caught by the professional editors.  For this I apologize, and am getting the books going to the shelves improved with these minor errors fixed.  It is hard to write and see everything that is mistyped in such a long document.  The pros should catch things but with all books errors occur.  I am reminded it is the content and the message you want to get out that matters most.  Being there to help fellow patients and their caregivers, to lift and encourage, is my aim.  

The PEG or G Tube, needs to be moved. As you know, the last one ruptured injuring my stomach where the tube enters this vital area.  It was replaced, helping some, but ultimately needed a surgeon to actually move it to a fresh, healthy location.  My feeding tube is long-term due to swallowing difficulties resulting from faulty brain signal confusion, coupled with vocal cord closure on inhalation. Breathing and swallowing difficulty together cause a need to have a stomach feeding tube.  Do I miss food? Absolutely! 

I have surgery scheduled to go in and excise the tissue that is damaged at the old site (removal of a small portion of my stomach), and relocating a new feeding tube where it will have a much better chance of avoiding further injury and/or infection.  Infection is the main culprit of degenerative brain disease demise. Infection with multiple system atrophy can occur in the stomach, lungs, and bladder, among other locations.  Also, the ventilator at night helps to avoid respiratory failure during sleep.  

Thanks for keeping up with my sporadic postings and for all the support in promoting my book.  Happy Holidays! Dan

PET Scan and Corticobasal Degeneration

I haven't been a regular blog writer this summer, to be sure!  I guess the teacher in me still sees the natural need for a break?  Sounds like a very nicely worded excuse!

Anyway, I was a principal and district office administrator, so I had a fairly conventional vacation schedule (very little :) the last 20 years of my career as a manager.

On the brain disease front, I am still working with our MDS (movement disorder specialist, neurologist) at the medical clinic to get a very specific diagnosis.  I continue to be considered, as I have been for 11 years, as having Parkinson's Plus, with MSA, PSP and CBD all showing symptoms in my case.  (Multiple System Atrophy, Progressive Supranuclear Palsy and Corticobasal Ganglionic Degeneration).

CBD is often referred to as CBS (Corticobasal Syndrome) during life and confirmed as a CBD after death.   CBS is under the umbrella of Parkinson's Plus, and more specifically, one of the Fronto Temporal Dementia's (FTD).  There are several categories under FTD, including PSP, CBS and Primary Progressive Aphasia (predominantly a severe language issue).

In my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER, I discussed CBD, MSA and PSP, knowing that I had the potential for being defined has having one of the three.  I didn't know that 8 years after publishing that book that my diagnosis would be possibly redefined-- well that isn't the best way to express it-- further defined. My neurologist way back when said it was "so much more than Parkinson's Disease," and that was in 2006.  He thought that Shy Drager or PSP were likely, and later landed on Shy Drager and more specifically, Striatonigral Degeneration.  Then, in 2012, I had brain surgery and Deep Brain Stimulators were inserted in my brain to block faulty signals causing walking and shaking/jerking issues.

I have had a lot of benefit from the DBS system I have in my brain in two areas and also the generator place in my chest, connected to cables that send the electrical stimulation to the movement center of my brain.  Not many on this earth with Parkinson's Plus have had DBS, so I feel pretty special!

Now, with an outstanding Movement Disorder Specialist working with us, I have had a DAT scan which had very noticeable results confirming that I have a Parkinson's Plus Syndrome.  Now, our MDS  has ordered a PET, which will use radioactive isotope to track metabolism in my brain to determine the type of protein damage I have.  The proteins in MSA (alpha synuclein)  and PSP or CBD (tau) clump (MSA) or tangle (PSP, CBD).  The aggregation of these proteins causes brain degeneration and is incurable and irreversible.  Attempts are being made through research to develop methods that are hoped to recognize these degenerative diseases early and possibly arrest them in their progression, or even just slow them down.  Cures are a long way off, but we are not out of the fight because we care about future generations who could develop the same type of conditions. 

What I have is not genetic and is not communicable.  It is a disease that begins spontaneously or sporadically.  It is possibly caused by toxins in the environment, including workplace or dwelling.  The domino effect of the proteins folding brings about the loss of neurons that provide for the function of the body: everything from blood pressure regulation, breathing control, swallowing, eliminating, eye movements and gross motor function, to name several but not all of the disabling affects. 

I have lost abilities, and will continue to decline, but I am still here and loving this life!  There is so much going on and I have so much hope and enthusiasm for my family, faith and music.  I have so much I want to accomplish each and every day. 

I will post after the PET Scan to share what might be learned about the effects these degenerative processes have brought. I end with a scripture reference that once was the motto of my Christian band I played in with John Moffett and Dale Samuelson, "Changing Heart":

2 Corinthians 4:16-18 New International Version (NIV). Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 
 -- Patient-Online

DaT Scan Results on the Heels of the Loss of Our Dear Mother

It has been a trying couple of weeks, but the sun shines behind the clouds, and it is breaking through. Losing my mother, Marguerite, is devastating and creates a void no one can fill.  However, her passing also makes crystal clear the beautiful life she lived, her several talents and the way her life lives on through each of us who were her family and were close to her.  I feel her with me more than ever, in my personality, abilities, and zest for life.

While this great loss was impacting our family, Karrie and I were going through another battle.  We have been fighting my disease by seeing an excellent specialist, a Neurologist specializing in Movement Disorders at Loma Linda University Medical Center.  I won't list the physician's name to protect her professional privacy but I would shout it from the rooftops otherwise! A wonderful doctor, indeed!

Over the 5 or 6 visits we have had with her, we have had very thorough conversations and examinations as she gathered clinical information about my 11 year history with a parkinsonian syndrome.  She approached it using scientific methods, which included starting from scratch with our story and her physical tests.  She spent 2 hours with us initially and has had at least three other doctors examine me while in her offices, as well.  She has adjusted my medications and also my Deep Brain Stimulation system generator each time I have seen her over a 5 month period.

Her actions have included giving me a memory medication called Namenda and it has helped with clarity of thought and provided for more peaceful nights of rest.  Also, she has sent me to an Ear Nose and Throat specialist to study my speech delays and swallow/choking issues. He put a scope up and down through my nose to view my vocal chords with a camera.  My breathing is compromised by my vocal cords which tend to close part way as I breath, causing stridor.  I am now getting speech therapy to help with both speech and swallowing, and I am going to pay more careful attention to my breathing now and in the future.

The decision she made to send me for a DaT scan was really key to breaking the log jam, to my eyes.    I had the scan the week after my Mother's services.  It was hard to be in the same facility in which she was last alive the week before, but the importance of this nuclear imaging test was worth this emotional reminder for Karrie and me.  I felt that Mom was present in my heart and mind while we were undergoing this DaT process.

A DaT is a study of the "Dopamine Transporter" to determine if neurons located in the Basal Ganglia responsible for the transport of dopamine have been lost.  I received an injection of Loflupane I 123 and this nuclear substance attaches itself to the remaining neuron cells.  During the scan, a Gama Camera detects this substance and shows a lighted area where the dopamine transport neurons remain intact.  If there is a loss or reduction in the normal shape, that of a semi-colon according to my Movement Disorder Doctor, then this indicates either Parkinson's or an Atypical Parkinsonian disorder.  Generally, the pattern would be lost unevenly on one side in Parkinson's and would show up with more uniformity on both sides in a Parkinson's Plus syndrome. My reference for this information about the DaT process is the following article found at this link: http://www.parkinson.org/find-help/blogs/whats-hot/april-2014 )

I have borrowed an example image to give the reader an idea of what it looks like in the normal versus the abnormal states of the basal ganglia:

Our Doctor studied my results and showed them to Karrie and me.  We were able to see examples which showed the dot of the semi colon without the comma.  The round portion is the Caudit and the tail, or comma, the Putamen.  In my images, there was little visibility of the Putamen.  The images showing the significantly reduced Putamen were very symmetrical.  The beauty of this is that our Doctor found that this scan affirmed (I didn't use the word confirmed for a reason, affirmed to me means "supported?") her clinical findings (observed phenomena), using the these results which were consisted with what she sees trending in my visits.  I do not have Parkinson's Disease.  I have a Parkinson's Plus condition which is most like Corticobasal Syndrome (CBS).   It is somewhat like MSA.

Corticobasal Syndrome is in the family of Frontotemporal Dementia.  There are four subtypes, with one being focused on a movement disorder that has some movement problems that appear similarly to Parkinson's, but also includes additional problems which makes the prognosis worse and the average time leading to death is typically shorter, on average.  Our Doctor continues to work on my case, but sees it as CBS, and within the FTD family.  Either CBS or MSA have to be confirmed through a study of brain tissue.   Until then, the parkinsonisms are diagnosed as a "probable" and confirmed post humorously if the patient and family choose that path.

You will hear me refer to my diagnosis as Corticobasal Syndrome for the foreseeable future.  I will not be referring to my condition as Parkinson's Disease, since my not having typical PD has been the consensus view of several doctors, including our long term 10 year (now retired) Neurologist and up to and including our Movement Disorder Specialist we have been seeing for 5 months.

As I began, I reflected on these challenges arising along with the changes that come from the passing from this life to the next of our Mother.  Mother was supportive and compassionate.  Her beautiful life puts this in perspective and gives me reason to be so thankful for each hour, day, week, month and year.  Like Mom, I will continue to push forward learning and living with all the love for family and those experiences that I can find within the confinement of my disabilities.  What a beautiful life we have been given, and losing my mother gives me even greater reason to give thanks to God for all that we have and enjoy.

Thanks for caring and for reading.  --Patient-Online