Monday question

Parkinson’s has fooled me again.  It was a good day – a work-out at the Community Centre in the morning and in the afternoon a class at the Interlude Spa.  They provide sessions for people with neurological problems.  All my pills were taken on time, and here, an hour and a half after my 7:00 pills and I am shuffling around and hanging onto things.  There is no accounting for some stuff.  Better luck tomorrow. 

 

This Parkinson’s stuff is so unpredictable.  Yesterday and today I took my pills on time and felt quite good all day.  But, last evening and again this evening, although I had my 7:00 p.m. medications on time I am walking poorly and shuffling – an hour later.  A new pill, started just last week, was to extend or delay the absorption of the Levocarbidopa and provide either a longer time between pills or diminish the low period as I reach the next four hour deadline.  (Deadline is too strong a word.)  Anyway I feel ok and will see what tomorrow brings. 

Nov. 28:  Today was Tea and Tango.  What is the connection with Parkinson’s you might ask?  Well, the rhythmic, back and forward movements of the dance are apparently beneficial to the Parkinson’s brain.  Some time ago two professional dance instructors in Halifax offered very low cost (even free) lessons to the Parkinson’s community.  As well, from two to four other professional dancers come out for each session to assist with the instructing.  At the end of each session we have tea and a variety of cookies and cake, etc.  It is fun, and for some of us, it may be the big social event of the week.  Are we healthier, I’m not positive? Are we happier?  Yes.

This evening I began a blog that I hope will interest readers and particularly those with PD.

The following should have been added to my first entry:

To the reader:  The medical terms and situations in the story are mine, gleaned from reading or experience.  They are not “doctor certified.”  My intention is general information, but if I have included some “fact” that is obviously wrong please let me know.

Thanks,

John

Dancing with Death

Five years ago I was diagnosed with Parkinson’s Disease (2010) and since then I have been seeing a neurologist every six months.  He prescribed medications and tested my time to complete a few simple tasks as a basis for future judgements on my progress.  The medications have helped and the doctor estimated that I could continue fairly normal living for ten years.

      The relationship between Parkinson’s and “The Dance” is not so obvious.  My approach in this paper and in my life, is that although there is no cure for the disease, there are little dance steps I can take to make Death wait a little longer.  This story deals with my participation in the dance.

      First, for those who have had no experience with Parkinson’s, I will include a few lines from Wikipedia.  The web site contents seem valid as they parallel my own reading and experience with the disease.

      “Parkinson’s is a neurodegenerative disease. Movement is normally controlled by dopamine, a chemical that carries signals between the nerves in the brain. When cells that normally produce dopamine die, the symptoms of Parkinson’s appear.  Currently there is no cure. You can live with Parkinson’s for years. The symptoms are treated with medication.”

      Symptoms include tremor, (my right hand shakes), slowness and stiffness, impaired balance, rigidity of the muscles, fatigue (exhaustion), problems with speech and hand writing, stooped posture, constipation, drooling, sleep disturbances, a loss of the ability to smell and difficulty swallowing.

      Some of these terms seem inappropriate to me.  Take “tremor;” that could be the movement of little leaves on a flower in a mild breeze.  When I shake, I shake, sometimes very vigorously.  Call a spade a spade.  Also the word “drooling.”  This has the images of Frankenstein or Dracula or a rabid dog.  I may trickle or dribble occasionally, and I hope that my beard hides it – but drooling, yuk.

      All of this isn’t full-time unreserved misery.  Doing projects and getting outside are my main salvation.  If I am building something in the basement workshop, making a repair, digging in the garden, cutting the lawn or shovelling snow I don’t shake and I walk quite normally. This is also usually the case when I am reading and relaxed. 

      Stress is a major factor.  My eating is getting slower and messier so a restaurant meal is not a big treat.  An appointment with the doctor (I have five.), visitors sometimes, new people or places can also get my hand shaking. Feeling depressed is common but usually short lived.  My hand-writing is terrible but I read a good deal – recently about neuroplasticity.  In my understanding, this is the ability of the brain to reroute signals to different parts of the body and to find new pathways around damaged areas.

      I have a great partner, a comfortable home and a fine view down Halifax harbour, but it is in my home that I have the most trouble.  It is where my balance and walking are most compromised.  It is a life of a million half-inch steps accompanied by frequent mild crashes into walls, door frames and the occasional one with a more severe landing.  I have the bruises and stitches to prove it.  Essentially this performance has three alternatives; first, my feet seem struck to the floor and I can’t get started for a few moments; second, I am moving, but in short, shuffling steps, taking a long time to go a few feet; and third, after getting moving and my torso has some momentum, my feet stop and I am hurriedly grabbing for a door frame, putting my hands out for a wall, trying to catch the back of a chair or some other fixed object.  As a variation on this last stopping, I surge ahead on my toes and have a difficult time getting my feet back down on the floor.  There is even a mysterious aspect to this.  Doors, open of course, sometimes seem to present a conceptual problem for the brain.  I can approach a door walking reasonably well but a foot or so away from it my feet stop working and I have to grab for the door frame to avoid a crash.  Death looks on, waiting for the next dance. 

      Parkinson’s even has a special sort of dream.  These lasted for about two years after I was diagnosed.  Thankfully they seem to have stopped completely.  Perhaps I should explain the difference between regular dreams and Parkinson’s dreams.  In a normal person’s dream the story in your mind is not usually connected to any bodily activity.  With Parkinson’s there can be a very direct connection.  When this matter was discussed with my doctor, he said that other patients reported fighting with tigers, as an example.  Exactly.

      My dreams are usually trying to get someplace with difficulties popping up.  With many of them there is a challenge, usually from a fierce animal.  For the ones in which I become physically involved they end up with me fighting the animal or occasionally a person and the struggle wakes me.  Just preceding the struggle I apparently make some vocal noises which are me getting ready to fight.

      When these dreams started, Jan heard my pre-struggle sounds and touched me to wake me up.  In a typical dream I had been walking on a path through a treed park.  Off to the left, the park changed into rough ground with tall grasses and trees.  A large mountain lion appeared out of the brush and ran toward me.  A struggle ensued and I woke up.  Unfortunately when Jan touched me, she became the mountain lion – and I struck at her.  Since then when she hears odd noises, she gets to the far side of the bed.

      Over many months I have had a variety of dream struggles.  There have been tigers, bears and at one point I was sleeping on a floor under a table when a swarm of rats ran over me. A few of my battles are with people.  In reaching out in my struggles I have occasionally ended up on the floor beside the bed.  This sort of thing has happened several times.  Once, to escape, I woke up standing in the hall closing the bedroom door.  To try and avoid serious injury, my side of the bed frame has been padded.

Foam pipe insulation and duct tape

      Probably the most unusual and most embarrassing dream incident happened when we had company visiting us.  Although I can’t remember how the dream started, at the end I was being chased through a hilly and heavily wooded area.  I ran down an old bush road to the top of a steep valley, and plunged down the slope.  Thinking that, in the dark, I might frighten them, I decided to howl - loudly.  That woke me up, and Jan, and one of our guests who came to the bedroom door to see if we were ok.  Death is standing back laughing.

      Depression is also common and for me it usually happens in the morning and is made worse by my ambulatory problems.  I do not feel sick in any part of my body, but all this shuffling and needing extreme caution to move anywhere makes it worse  Another part of getting older is that I am having trouble seeing myself as this old man with a cane shuffling and bumping into things around the house.  Until about a year ago I could do almost everything in the same way I had for my whole life – perhaps a little slower.  Now, I feel that my body has let me down.  It has become an embarrassment.

      There is one area of my mobility that does worry me.  At the moment, if I am starting to do a crash, my reflexes and hand mobility are quite effective in catching something to either stop or break my fall.  Sometimes the “catching” is a very near thing and I wonder to what extent my reflexes will deteriorate as I age even further.  Some misses would allow my face or other parts of my head to strike a sharp corner of a desk, a kitchen counter or similar with serious consequences.  Depression, poor mobility and the possibility of a serious fall bring Death dancing a little closer. 

      Fortunately, my depressed periods are relatively short and I realize that I probably will feel normal in a few hours.  I am also doing a few things to try and keep my physical strength up which helps with my walking, stability and my feeling of wellness.  Three mornings a week I go for an hour to a nearby community centre that has the usual gym equipment.  Added to these regular sessions I do gardening, lawn cutting and, in the winter, snow shovelling  My weight is good and my blood pressure and heart rate are at the low end of the normal scale.

 

      There are a few obvious home security fixtures that most seniors should consider.  In the shower I have installed a safety bar for steadying me when needed.  Another feature of the bathroom is a grab handle fastened to the wall opposite the toilet.

 

      Two other installations have been important.  When I leave the bedroom for the bathroom I turn left and six feet ahead is the top of the stairs.  On several occasions in my shuffling and mini-step travels I have come to a stop just before I get to the post at the top of the hand rail and lunged forward.  Fortunately, so far, I have always caught the post and avoided a fall that could be fatal.  Now there is a rope stretched diagonally from the post to a closet door-knob opposite the bedroom door – a hand rail and a deflector away from the top of the stairs.  It works.  Another threat has been the stairs going to the basement.  There is a hand rail, but it doesn’t start until half-way down leaving the top half dozen steps with nothing to hold on to.  A similar piece of rope to the one used upstairs is tied to two large hooks screwed into the door frame at the top and into a beam in the ceiling down below.  This arrangement has been handy several times.  Death is frowning impatiently.   

 

Nylon rope thick enough to give some grip

      Although my knowledge of neuroplasticity is elementary it has led to some interesting experiments.  The official science refers to the ability to retrain the brain to send signals to the muscles through channels developed after the normal routes have been damaged.  At my level I am only trying to deceive the brain, to trick it into mitigating some of my symptoms.  For example I am aware that being involved in a project; hammering, sawing, drilling and more, distracts the usual shaking and mobility problems.  My experiments have tried to mimic these effects.

      The first attempt was to reduce or prevent my right hand shaking, particularly under stress.  In these cases the stress could be induced by a visit to a doctor, going to a meeting or simply having visitors at our home.  For this I chose a small, fine threaded, bolt, lubricated it so that it turns easily with my fingers – and there you have it.  It is small enough to not be obtrusive held in the hands and can be out-of-sight while the nut is rotated back and forth.  The brain thinks it is working on an important project and stops shaking.

 1/2” fine thread bolt – 1 3/4” long

      My second attempt to improve my mobility in the house was simply to wear sturdy walking-shoes rather than the usual slippers.  Outside I walk fairly normally and my brain must think that, wearing those shoes, I am already outside.  My walking in the house becomes nearly normal.  Even putting on my Tilley hat inside the house helps with the illusion.

Sturdy walking-shoes and Tilley hat

      A third innovation could be called “aiming.”  Our home has hardwood floors, fairly short, narrow boards which have colours ranging from light beige to dark brown.  As I walk along I say to myself: “light board, dark mark, end of dark board” etc.  Although I aim to walk on each named spot I don’t necessarily get to them.  Just the idea that my feet have a positive direction seems sufficient.  This works most of the time but coming to a door occasionally defeats my system.  Death is frowning. 

 

      From my scanty knowledge it seems that people who die from Parkinson’s disease itself gradually succumb to the diminishing of muscle activity in the whole range of internal bodily functions that keep us alive.  It also appears that large number die from peripheral situations and a preponderance of them are from falls.  With a fall come broken bones, a loss of mobility and a loss of body tone and strength.  Where a young person would heal and soon return to normal activity, for older individuals healing and recovery are slow and often impossible.  Inactivity further weakens both the muscles and the desire to do anything to reverse it.  Infections and pneumonia also take their toll.  Exercise and muscle building on a regular basis can minimise the consequences of a fall and assist with recovery.  A serious fall can be the prelude to the final dance.

 

      Death is my partner - on with the dance.

 As a reminder, you are welcome to e-mail me your own stories at pdupclose@gmail.com.

Sources Consulted

 

Doidge, Norman, M.D., The Brain that Changes Itself, London, Penguin Books, 2007

 

Doidge, Norman, M.D., The Brain’s Way of Healing, New York, Penguin Group, 2015

 

Parkinson’s Society Canada, Exercises for People with Parkinson’s

 

Parkinson’s Society Canada, Your Guide to Treatments for Parkinson’s Disease