Options near the end of life–Exploring Parkinson’s

My wife and I had occasion to visit some old friends in California recently.  We have known one member of the couple since 1962, when we started college together.  We last saw them almost three years ago and have stayed in touch through email and phone calls.  David has Parkinson’s Disease (PD), so we knew that we would likely find him in worse shape than the last time we saw him, when his main symptom was a slight tremor in his hands and a shuffling gait when he walked.  Lois had given us reports that he was working on therapies to counter the effects of the Parkinson’s.  

But David was in a more advanced stage of the disease than we expected.  His legs have developed significant rigidity, though he is able to walk slowly with a brake-handle walker.  He was stooped when he walked, and drooling was usually present around his mouth.  When he walked, he often exhibited freezing–it took him some time to take another step each time it occurred.  

As the Parkinson’s Foundation explains, these movement problems are caused by the lack of dopamine being produced in the brain.  Levodopa is used to help the body continue to supply dopamine, with ever-increasing amounts or different formulations of the drug needed over time.  Contrary to myth, the Parkinson’s Foundation explains, Levodopa works for decades.  Levodopa does not treat all the symptoms of PD, but it dramatically helps the most disabling motor symptoms.

What we didn’t know before our visit, though we had begun to suspect, was that Lois is clearly in the early stage of dementia, perhaps the Alzheimer’s that had befallen both of her parents.  In addition, she has developed a back problem after surgery for stenosis that has caused her to walk haltingly in a bent-over posture, a shocking image for us: she had always walked ramrod straight for the fifty-seven years we have been friends.

From our conversations, we became aware that their views about the end of life differ from ours.  Lois has told her son that when she can no longer recognize him, it would be time to put her in a nursing home, and that would be fine with her.  We don’t know David’s preferences about how he wants to be cared for as his Parkinson’s worsens, though he seemed to expect that assisted living or a nursing home would be in his near future.

Both David and Lois know about our involvement with the Final Exit Network (FEN).  In fact, I consulted with Lois a year or so ago about one of my posts on this blog because of her relevant professional background.  Because my wife and I never initiate discussions about another person’s end-of-life wishes, we did not discuss our preferences on the subject.  I don’t proselytize for my views because they are preferences for myself, not anyone else.

After our visit, which included a dinner in their home and going out to dinner at a local restaurant the next day, we became very aware of their limitations.  Right now, they have a workable symbiotic relationship.  What Lois forgets, David can fill in.  What David can’t do, Lois can.  This won’t always be the case, but it works for now.

I have had several friends and acquaintances with Parkinson’s Disease.  Some chose to live with their disease until its natural end; others chose a different path.  One close friend, at age 88, decided to stop eating and drinking (with help from hospice, family, and other caregivers).  She died in about ten days.  Certainly, the effects of PD vary considerably between people and that may affect their decisions.

The Parkinson’s Foundation (PF) offers reliable information and advice for sufferers of PD and their families and caregivers.  To begin, it is important to know that PD affects the ability to walk, along with “related (motor) symptoms such as tremor, stiffness and slowness.”  Apparently, these motor symptoms are caused by a reduction of dopamine in the body.  But many symptoms are unrelated to movement, as the PF explains:

People with PD are often more impacted by their non-motor symptoms than motor symptoms. Examples of non-motor symptoms include: apathy, depression, constipation, sleep behavior disorders, loss of sense of smell and cognitive impairment.

The PF also explains that “many non-motor symptoms of PD are highly treatable,” but symptoms vary.  For some, medication effectiveness may diminish or disappear between doses or over time, and need to be adjusted when such circumstances occur.  But the progression of PD is usually very slow.

Contrary to what many people think, the effectiveness of the primary drug used to treat PD patients, levodopa, does not cease working after a particular period of time.  I have heard many people worry that levodopa will stop working after five years, influencing them to put off using it until later in the progression of the disease.  Levodopa is converted into dopamine in the body to replace the dopamine the brain has stopped producing.  As the PF explains further:  

Levodopa works for decades. Levodopa does not treat all the symptoms of PD, but it dramatically helps the most disabling motor symptoms.

PD is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain . . .  Symptoms generally develop slowly over years. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience:

•  tremor, mainly at rest and described as pill rolling tremor in hands. Other forms of tremor are possible

•  Bradykinesia [slowness of movement]

•  Limb rigidity

•  Gait and balance problems

 . . . Currently, all therapies used for PD improve symptoms without slowing or halting the disease progression.

Senescence–the aging process–comes with aches, pains, and worse; much worse for many people.  In my experience, no one who lives to age seventy escapes senescence, but most are fortunate enough to avoid one of the major neurodegenerative diseases.  Our friends were not among those fortunate people.  David has decided to ride out PD, just as Lois has decided to ride out Alzheimer’s.  We wish for both of them the best care possible, and we will support them in whatever ways we can.  Everyone deserves support for their end-of-life decisions, which are based on their experiences, values, circumstances, and understanding of the world. 

Sometimes it is difficult to say and mean, “Gracias a la vida” (thanks to life).  But many clients of FEN do so even when faced with debilitating neurodegenerative diseases that shorten their lives or bring them misery.  Almost always they thank FEN’s volunteers with kind words (and sometimes hugs) for making it possible to have a good death when they want to end the suffering they are experiencing.  Whatever course our lives take, having choice at the end of life makes real the liberty to which all of us are entitled.  Gracias a la vida!