WE CAN’T CURE PARKINSON’S, BUT WE CAN COEXIST WITH SYMPTOMS | PD BLOG

Depression and coping with Parkinson’s Disease is a major issue for multitudes of PD victims we hear from in this forum, but it doesn’t have to be that way if everyone responds.

We still have no “miracle cure,” but steps forward can be mini-miracles if they yield progress.
Courage, willingness, open minds and dialogue can ease the darkest periods for PD families, whether they consist of an older parent/patient and driven, lone caregiver or an extended circle of relatives and friends who lend a hand.

They can be a nucleus of hopeful help, armed with empathy and understanding to lighten the burden, mightily. One reader relates how her mother, 85, is overwhelmed  by her handicapping symptoms, a lack of understanding of what PD is, and easily slips into despair that any improvement can come with exercise and a more positive outlook. You can’t get a prescripton for that filled by a pharmacist in a white tunic.

“She thinks she has this ‘awful disease and so she limits herself because of the depression and not being able to understand what must be done to feel better, and why.”

Besides medication to ease troublesome symptoms and precaution in movement about the home and yard. Fear, doubt and reluctance to even try to alter Mom’s discouraging lack of action and continuing depression leaves her trapped in a vicious circle, one I know only too well.

Long before my PD diagnosis, I suffered from clinical depression. I discovered beer at 19 and self-medicated with addicting alcohol for most of 30 years until new antidepressants and AA finally freed me. From 1991 until late last year, I felt like a new person. And then in October came my PD diagnosis.

I still feel like a new person,albeit curious as to what the future holds for me now.

But enough about me. I’d still rather have what I have now than the life-threatening and humiliating stigma of alcoholism and clinical depression that I endured for so many years.

Life is still good, just a bit more complicated.

Making life better while suffering from a physical, emotional or mental disease or condition is often at the outset a matter of convincing someone that it can indeed improve. Sometimes–as in the case of Parkinson’s Disease–the fact it cannot be cured but only alleviated is a troublesome roadblock.

Since so many of us only experience PD’s onset in our 50s or later, with a slow progression time of perhaps 20 years until things really get bad, we may not react strongly at first. People are funny that way. Others diagnosed much later may wonder if it’s really worth fighting.

Is your glass half full or half empty?

And then there is the question of how bad it may get in the long run, because some people who’ve had the disease for years don’t display marked symptoms nor major deficits.

What are those symptoms or tipoffs that may manifest first as annoying little quirks? Many people just don’t know.

The day Dr. Alexis Keegan at Long Beach VA Medical Center’s Neurology Clinic gave me several tests and evaluated physical clues. a light bulb came on over my head as they do in comic strips. Several occurrences I’d noticed the past three years were PD symptoms. But it took a physician to connect the diagnostic dots and tell me.

One burst from my subconscious in a poignant flash of recognition. On Sept, 1, 2009, I was asleep on the floor of  my gravely ill fiancee’s hospice room in Tucson, AZ, when I was awakened at 3 A.M. by running feet. I knew instinctively who it was-the nursing staff–and why.

Verna had flat-lined. Her ailing heart and struggling lungs had stopped. Her going was peaceful. She had sat up in bed soundlessly. Her eyes were closed serenely’ But her pretty lips drooped on one side. My dolly girl, so still.

I tried to sit up as the nurses burst in, but nothing happened. I couldn’t rise from my patch of carpet, so I rolled onto my belly and pushed up onto my hands and knees. What the heck was wrong with me?

Verna had been my date for the 1959 senior prom, but had moved away after I graduated. We lost touch for 46 years, then resumed contact in 2006 daily by Internet, then telephone. We visited between the desert and L.A., coastline. We were a couple for three years.

But three nights before her passing, we agreed to marry. It was a brief engagement, about four hours.. Her son Greg called to say he’d found her collapsed, comatose when he came home from work. “You’d better come,” he said and I got an early morning flight.

Verna had chronic obstructive pulmonary disease (COPD) and a hereditary cardiac condition, atrial fibrillation, which can cause a dangerously irregular heartbeat.

This was my first experience with a chronically ill loved one whose disease is always fatal unlike Parkinson’s Disease, which is incurable, but carries no terminal deadline.

I tried to be positive and cheery so Verna would know love lives on, despite tangles of oxygen tubes, pain, frustration, crossness and fatigue. She made sure I knew that too.

I watched her gradual decline and wondered how it would be to have a sickness that’s progressive and impossible to cure and how I might handle handle it, with hopeless resentment or grace and gratitude. Perhaps, at times, it will be some of each.

Now, I’m ready to learn.