Off the Cliff: Flood of Emotions While Singing "Give Me Jesus"

The following is an article I wrote for an earlier iteration of this blog on January 27, 2013, after having brain surgery to implant two deep brain stimulation devices in my head, connected to a brain pacemaker located by wires in my upper right chest. I welcome your feedback and responses.

It is hard to describe the feeling I have today.  On Sunday I lost something I have held on to throughout my life, even after Parkinson's Plus entered the picture.  In spite of everything this neurological disease has caused, I have been been able to sing and play on stage.  It is hard to get up and down on the platform at church, and I am not saying that there has been no effect on my musical abilities since I have been diagnosed these past seven years, but I was somehow always able to sing my song and play my own accompaniment, without failing to complete a song in performance.  As a songwriter who performed concerts in my late teens and and twenties, a musician and singer who played in worship bands in churches off and on my entire life up to this day, as a wedding singer who performed as a minstrel singer often performing 4-5 songs during church wedding ceremonies as a side profession for many years, and as an entertainer playing for banquets, schools and churches up through the present, I have never failed to finish a song.  Sunday, it happened.  It was defeating.

I was singing the song, "Give Me Jesus," a traditional, historic song that I was singing and finger picking in a folk style.  a portion of the lyrics read:

Verse 1:
In the morning, when I rise
In the morning, when I rise
In the morning, when I rise
Give me Jesus.

Chorus:
Give me Jesus, Give me Jesus
You can have all of this world
But give me Jesus.

Here I am in 1975 Singing in one of the Many Weddings in which I Performed.

I had sung this and the second verse followed by the chorus and everything had gone well.  Then, as a neurological patient, I came to the third verse, which trigged a weeping spell.  This brought my collapse.

I began the third verse, singing,  "When I come to die..." and as I went to repeat those words two more times as the song calls for, I opened my mouth and squeaked out, "When I come to die..." and at that moment I could barely say the word "die."  My family was sitting in the second row and I realized the cruelty of those words. Having a disease which has an average life expectancy of 7-10 years, made these words sung as my family listened seem sad and cruel.  I began to weep and the more I wept the less I was able to open my mouth and sing the words.  I played the guitar and never stopped playing the accompaniment.  I tried to mouth the words further and after a couple of lines, the choir leader named John, who was behind me, began to softly sing for me, and others joined in.  Soon many were singing the words, as I wept and sobbed, continuing to finger pick my Guild guitar.

At the conclusion of my playing and crying, my wife and caregiver, Karrie, instinctively knew she needed to come up on the platform and guide me down.  I don't walk well, having coordination and balance problems that interfere with my ability to walk.  But more than that, I was an emotional mess, and I needed her comfort.  We hugged in front of a full church which holds about 200.  Others were shedding tears.  My son, Mark, who plays the drums in our band at church, reached out and comforted me, touching my knee.  I was deeply hurt, partly because of the mood these lyrics had brought out of me, and also due to the end of a lifelong ability to always deliver the song that I had never lost, despite my disease.  Now, even that had succumbed to Parkinson's Plus syndrome.  My heart was broken as my family members and my pastor comforted me on the spot.  Pastor Brad indicated compassionately that they had all received a gift as a result of this emotional moment. These words brought assurance that not all had been lost.

I became aware that there is a condition that accompanies Multiple System Atrophy, referred to in one location as "inappropriate laughing or crying."  In other references there is a term used for excessive crying as resulting from Pseudobulbar Affective Disorder and is found in brain diseases such as Parkinson's or conditions resulting from brain injury.  Also, Deep Brain Stimulation surgery has been shown to result in an increase in PBA, a fact that is not lost on me as a DBS patient 6 months in recovery after surgery.

The trigger was the emotion that was induced by the third verse.  The idea of singing about dying in front of my family members altered my professional ability to focus on my song performance. It triggered a never-before-seen lack of ability to block out the crying reaction that I normally control easily while singing and playing my guitar.  As my wife said, once the crying moment began, I was "off the cliff and heading down."  There was no turning back.  This I had never experienced before and it had never happened while I was performing!  Now, it has.  I am dealing with this reality fine several days later, but deep down my heart is broken.  I will never feel that sense of musical strength that I can sing any song and deliver the message in the lyrics for my listeners-- to lift, to encourage and to bless-- I lost that feeling Sunday.  Of course, I can choose my songs carefully and I am not overreacting, but this for me was an important marker.

Will I go on singing?  You bet I will.  I now know that this emotional lability* (see below) was always a possibility and is more so now.  I won't quit singing in public because it is who I am and what I do.  I won't say that the song selection was the problem, because we didn't know based on my history that this would happen.  Now that I know of my potential to go off the cliff emotionally, I will look at each solo with care and be sure it will not be too sensitive a subject to share on stage with my audience.  WE WILL GO ON and that includes singing and performing. -- Patient-Online

* Emotional Lability is defined as: Pseudobulbar affect (PBA), emotional lability, labile affect or emotional incontinence refers to a neurologic disorder characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays.  PBA occurs secondary to neurologic disease or brain injury.

Author's Note:  I want to add that there was a silver lining in this experience.  The people at Magnolia Presbyterian Church, where we have gone for 10 years this coming July, showed a lot of love with a standing "O" after my song with the broken performance.  There was an outpouring of hugs, words of support and kindness that was shown.  My Pastor told me that he would welcome me to sing again without reservation.  It was a special affirmation, and very much like the church we know-- full of loving people and leaders who care.  Throughout my experience with Parkinson's Plus they have been there for our family and supported me as a musician, as well.  We are always grateful for our Magnolia Church Family!

The Blues Won't Let Me Go!

This is not a bummer, but rather a good thing.  The blues are a music style/genre that I have grown to love and enjoy since I decided in 2009 to make a goal of growing in my knowledge of and skills in writing, singing and playing the blues.  This includes the guitar and the mandolin, along with the vocal style.

My alternative blog is, My Blue Strat, and I am posting below my newest journal entry on that blog.  Follow this link to learn about my love for the blues and why I find this form of music a positive source of energy and expression.

http://mybluestrat.blogspot.com/2017/05/the-blues-wont-let-me-go.html

Time to Let it Sink in: Coriticobasal Syndrome

I took some time.  All of April to be exact, and then some.  Here it is May and I am thawing out my writing impetus after 5 weeks of writer's block.  After getting a new (November 2016) probable diagnosis of a disorder called Corticobasal Syndrome, a member of the Fronto Temporal Disorder family, I ran out of words to say, or write.

First, of all, I am very grateful to our great doctors-- our primary care doctor at the clinic, the various specialists who treat me for everything from choking/swallowing difficulty to severe eye pain, and up to and including the outstanding Movement Disorder Specialist/Neurologist that is working so hard to  find answers to my rare Parkinsonian disorder.

For years, I wrote on this blog (since 2006 with some breaks) details of my experiences, feelings, faith struggles, spiritual plateaus, and thorough verbal descriptions that defined and categorized all of the various Parkinson's Plus syndromes that I am similar to, if not experiencing.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. -- Galatians 6:9

Now, after all these years, I am at peace.  I have for years been defined as having Parkinsonism and one of the Parkinson's Plus syndromes, most likely Shy Drager. Shy Drager is known as Multiple System Atrophy and I have the hallmark symptom, low blood pressure upon rising from bed or getting up from a sitting posture.  This causes blacking our, loss of oxygen to the head and can be an hours-long condition where my neck and shoulders ache, my arms and upper extremities get a numbness and lack of feeling, and my strength is very limited, causing great fatigue.  This blood pressure issue gives pause to my neurologist and is the reason why in addition to Coricobasal Syndrome (Alien hand and Eye control/focusing/tracking issues) and Parkinsonism (tremors, stiffness, loss of balance, and many other symptoms), I am considered to possibly still have MSA.

My behavior, emotions, thought changes-- an area so personal to me that I can't discuss yet-- means that I am being looked at for Fronto Temporal issues.  FTD is scary.  I don't know what to think about it.  If I am confusing you, just imagine how confused I am.

All I can say is, I am beginning to want to share about these things.  I respect my physicians and want to give them the space and freedom to consider all the avenues and pursue the best truth that describes the need and leads to the best possible treatments.  My Deep Brain Stimulator is working for me and keeps me walking-- at least enough to use my walker.

Today, Karrie is taking me on a very nice outing to Ikea.  That sounds like a lot of fun.  This will require my wheelchair and mean that I will be dodging nice people all day long. It will be great to be out and part of the world for a time.  Just enough time to let it sink in again-- I may be disabled, but I am not grounded.  Not completely.  I have Coricobasal Syndrome:  a loss of cells in my basal ganglia on both sides enough to show up in my DaT scan results and cause the loss of body control that has put me in a walker and stollen my career.

After all this time, I don't have as much to say.  However, I am beginning to want to share again.  I will give it a try, very soon.  Meanwhile, I've got so much to do. I'm a father, a husband, a grandpa and a guitar player!  Life is beautiful, man! Stay tuned-- Patient-Online

Confusion Over Parkinson's Contrasted with CBS and MSA

This is Multiple System Atrophy Awareness month!

Go to MSA Coalition Page for More Info

I have quite often discussed with some of you in the family, and various friends, about the difference between Parkinson's Disease and the Atypical Parkinsonian disorders.  I am going to give you a few points to chew on, knowing you are the best ambassadors we have for spreading the word about these rarer forms of Parkinsonism.

Parkinsonism is a condition in which signs and symptoms of Parkinson's appear in the patient's disease.  Even though the person may not have Parkinson's Disease, they have a brain disorder that causes similarly appearing symptoms, including tremors, balance problems, stiffness, walking difficulty and cognitive changes.

Parkinsonism appears with Parkinson's Plus syndromes such as Multiple System Atrophy, Corticobasal Syndrome and Progressive Supranuclear Palsy.  Since I was first diagnosed in 2006, the neurologist I saw for ten years thought that my condition was one of these three.  As time went on, Multiple System Atrophy became the most likely.  All three of these conditions are determined to be "probable" in life, and are confirmed after death through a brain tissue study.

Even though I have  Parkinsonism it is not Parkinson's Disease in the simplest form because the disease process in my brain is more involved than in Parkinson's.  I have Corticobasal Syndrome (CBS), and it is uncertain if it would be alternatively considered Multiple System Atrophy (MSA).  These have overlapping symptoms and are best described as rarer forms of Parkinson's.

Has much changed?  Not really, except I have more clarity and certainty of the degenerative brain disease that has taken so much from our lives in the Brooks family.  We are fortunate to have this increased clarity because the neurologist I have been seeing of late is a Movement Disorder specialist, which is a doctor of Neurology who specializes in all things Parkinson's and Parkinson's-like.   She saw a clear indication in the results of my DaT Scan which demonstrated that I have Parkinson's Plus, not simply Parkinson's Disease.

Parkinson's Plus has long been the understanding of my condition.  I wrote about this in my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER.  The confusion arises because the word "Parkinson's" appears in both descriptions of the diseases.  Technically, they are different in that Parkinson's Plus is a faster progressing disease and causes more disability sooner.

That is why I was unable to continue driving and had to retire at 51.  I have difficulty walking with coordination and I struggle with choking on food and liquids.  I also have digestive, urinary, heart rate, blood pressure regulation and body temperature issues.  These are not visible to friends and family so what appears to be a better day, could be a day I am having trouble with my blood pressure or having great difficulty coughing after drinking liquids.

I also have very abnormal horizontal eye movements which are caused by a loss of neurons in the area of the brain that controls eye movement.  At times I see double as a result. 

I am so glad that you are interested and are trying to grow in your knowledge.  MSA is a disease I have been identified with for 10 years or more.  I have CBS, but if it were to turn out to be MSA at some point, that would be a very similar prognosis. My greatest concerns are pneumonia, breathing constriction, and urinary infections.  I do not have idiopathic Parkinson's, but I do have a form of Parkinsonism, and much of the research being done for P.D. will have a benefit and weight heavily on the potential for discoveries that relate to PSP, MSA and CBS syndromes.  I will always identify with my fellow patients who have Parkinson's Disease, and the support groups for Parkinson's are virtually the only in person, brick and mortar groups we can attend anywhere near the Riverside, CA area. As always, thanks for reading! -- 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

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

Pain in MSA

Pain is a part of Multiple System Atrophy.  Does that come as a surprise?  The same is true of Parkinson's Disease.  I have stiffness in my arms, legs, feet and hands.  My neck is moving downward, slowly, over the years growing closer to my chest.  When I walk I feel the stiffness and cramping of my neck and upper back as my shoulders and head pull down involuntarily. The medicine Gabapentin is a big help in treating pain.  It relieves nerve pain, which is generated by the rigidity of parkinsonism that is a part of MSA. 

Dystonia is a related condition that causes involuntary contractions, postures and tremors, such as my head which bobs or shakes most of the day and night.  My Deep Brain Implants and generator work together to reduce some of this stiffness and twisting movements, along with the Sinemet which is a wonder drug that is a must for all Parkinson's patients, along with PSP and MSA patients who have Parkinsonian issues along with their central symptom issues.  So, yes, pain is an issue and those who care for MSA victims need to know this and keep it in mind at all times.  In closing, thank you to my spouse, Karrie, and all caregivers that make such a difference in alleviating pain and in lengthening our lives!  -- Dan