Insights from Parkinson’s Disease – Part 1

We have many things that come and go into our lives.  Some things we never asked for, wanted or hoped to receive.  However, this morning I thought about an illness that affected my Dad and Uncle Gilbert, too.  The disease was Parkinson’s.  The only time some of us heard about it was when we were younger and heard that older people sometimes got it and it gave them the uncontrollable shakes.  For some of us we heard about it with Michael J. Fox’s personal account of this disease

I have often said that I wanted to be a Lifelong Learner.  There is so much to learn and I want to be like one of my heroes, a senior lady that became my student while I taught classes at the City of Boise Parks and Recreation.  I could not resist asking her how old she was.  When she told all of us in her late 80’s we were surprised but so happy to hear that.  I had the students give her a standing ovation after I asked her, why in the world would she want to learn something from me and my class on Decorating on A Dime?” When she told all of us that she had a little apartment and wanted to learn how she could improve it on her limited income, I told her, how proud I was that she wanted to make the effort to take the class and truly honored that she wanted to learn from me!  I thought out loud that I was sure she could all teach us a thing or two about life.  Her attitude to be a Lifelong Learner was refreshing!  I told her when I grew up, I wanted to be just like her!  We gave her a standing ovation.  So in this life we will have many lessons.  It is always interesting to see the classes that we are given in life and we need to learn some lessons we did not know at the time.

IImage I am walking out into a new chapter in my life.  My Dad, “My Popsicle,” as I affectionately called him, just died just a few weeks ago.  It is new day.  As I process my grief I have found that writing about some of those thoughts is helping me during this grief phase of my life.  Hopefully, some of my words will help you understand me but most of all it will help you on your journey, your walk, your life.  I thought I would share the following insights I am learning….

Even though my Dad had been estranged from me for over five years, I did not expect to see the perennial “Dick Clark finally age with his dreadful disease called “Parkinson’s.  He shrunk five inches from his 5 foot eight inch frame.  He also lost his sense of smell and taste about ten years prior to that time.  He tasted food by his limited memory on what it used to taste like to him.

My Dad had a gift in naming people.  He would just spend a little bit of time and observed them as he would find the perfect nickname for them.  No matter what culture, sex or profession they came from he would name them.  Many times those nicknames would travel with them in their lives.  He named me “Questions” and said I had a wealth of questions and wondered if they would ever stop.   Some of the questions I used to have of my Dad were:

  • What was he like as a young boy growing up in Greeley, CO with his four other siblings?
  • What experiences did he have that made him into the man he became?
  • Why did he choose being a truck driver from all of the professions he could have had to make his living and place in life?  He drove across this great country of ours delivering fruits and vegetables to people all over the place.  I did not appreciate his profession all the time.  I used to hate it sometimes when it took him away from our family throughout the years.
  • What made him escape from us?  Why would he shut down like he did and sometimes would have gaps of giving us the silent treatment he learned from his Mom.  I HATED IT!
  • Why did he act the way he did? 
  • Why did he drink so much and become a totally different person?  Couldn’t he see how much it affected us his family so much?  What kind of pain was he trying to drown out?
  • Why was it so hard for him to show his love to me and others in our family? 
  • What made him feel unworthy, unaccepted and unloved? 

He had always had a sharp memory, but sometimes the dementia associated with this Parkinson’s Disease” was both a blessing and a curse.  The short definition according to Wikipedia is this:  Parkinson’s disease is a disorder of the brain that leads to shaking (tremors) and difficulty with walking, movement, and coordination.

According to the Institute of Neurological Disorders and Stroke -What is Parkinson’s Disease?

Parkinson’s disease (PD) belongs to a group of conditions called motor system disorders, which are the result of the loss of dopamine-producing brain cells. The four primary symptoms of PD are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; bradykinesia, or slowness of movement; and postural instability, or impaired balance and coordination. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks. PD usually affects people over the age of 50.  Early symptoms of PD are subtle and occur gradually.  In some people the disease progresses more quickly than in others.  As the disease progresses, the shaking, or tremor, which affects the majority of PD patients may begin to interfere with daily activities.  Other symptoms may include depression and other emotional changes; difficulty in swallowing, chewing, and speaking; urinary problems or constipation; skin problems; and sleep disruptions.  There are currently no blood or laboratory tests that have been proven to help in diagnosing sporadic PD.  Therefore the diagnosis is based on medical history and a neurological examination.  The disease can be difficult to diagnose accurately.   Doctors may sometimes request brain scans or laboratory tests in order to rule out other diseases. 

Is there any treatment?

At present, there is no cure for PD, but a variety of medications provide dramatic relief from the symptoms.  Usually, patients are given levodopa combined with carbidopa.  Carbidopa delays the conversion of levodopa into dopamine until it reaches the brain.  Nerve cells can use levodopa to make dopamine and replenish the brain’s dwindling supply.  Although levodopa helps at least three-quarters of parkinsonian cases, not all symptoms respond equally to the drug. Bradykinesia and rigidity respond best, while tremor may be only marginally reduced. Problems with balance and other symptoms may not be alleviated at all.  Anticholinergics may help control tremor and rigidity.  Other drugs, such as bromocriptine, pramipexole, and ropinirole, mimic the role of dopamine in the brain, causing the neurons to react as they would to dopamine.  An antiviral drug, amantadine, also appears to reduce symptoms.  In May 2006, the FDA approved rasagiline to be used along with levodopa for patients with advanced PD or as a single-drug treatment for early PD. 

In some cases, surgery may be appropriate if the disease doesn’t respond to drugs. A therapy called deep brain stimulation (DBS) has now been approved by the U.S. Food and Drug Administration. In DBS, electrodes are implanted into the brain and connected to a small electrical device called a pulse generator that can be externally programmed. DBS can reduce the need for levodopa and related drugs, which in turn decreases the involuntary movements called dyskinesias that are a common side effect of levodopa. It also helps to alleviate fluctuations of symptoms and to reduce tremors, slowness of movements, and gait problems. DBS requires careful programming of the stimulator device in order to work correctly.

I will share more as these things as it gets clearer to me…I need to continue packing as we are getting ready to move and make some major life changes…In the meantime here is a song that really spoke to me by Brad Paisley – When I Get to Where I am Going…

https://www.youtube.com/watch?v=yYHT-TF4KO4&list=RDyYHT-TF4KO4

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