On Being Born and Growing Older

Like you, I have no memories from my first year of life. In fact, my memories prior to age 15 are pretty tenuous and consist of a name here or there and scattered incidents, really foggy incidents in scattered places. I think the same can be said about the next 6 decades, only those names and places come to me in high definition colour, some good, some bad, but all interesting enough that I have chosen to remember them. When I think of the past, there is very little negative energy emanating from my youth.

I am in a place where I am very happy and if it were not for a serious illness that has invaded my wife, I would be very content with our family of 3 adults, their spouses, and their children. I have only missed one thing, the passage of time.

I turn 73 this month!

Gone are the days of wine and roses, the excitement of a new girlfriend, the joy of marriage, the first teaching job, my life as a teacher and so on and so on. I am proud of my stint as a student activist and the true life-long friendships of Wayne and Bill who joined me in my exploits. I miss my friends who have gone to the great unknown. I miss growing up on an army base. Yes, I am an army brat and proud of it.

Where did those days go. (not a question. No question mark required.)

In our youth, it was not within our reality to grok that we all have an expiry date. We looked forward to our birthdays, Christmas and New Years. Now, many of us are members of the golden age club,and we are faced with our mortality which, for some of us includes an attack on our brains by the devil PD. This is unfortunate because, as in my case, one feels no different than when we were in our twenties except our bodies won't comply with our brain's commands. So, on top of old age, we have a persistent brain problem. What to do? (question mark required).

I can suggest you take heed of the following to slow down the pace of PD. Trust me. I have been there, done that. At least consider the possibility I am right.

• Get yourself out of the wretched doldrums of inactivity. Science has all but proven that exercise slows the rate of advancing PD
  
• Eat nutritious meals
  
• think positively and confidently. Assume your muscles will do their assigned job, even if they don't.
• Take your meds as precribed
  
• Do not accept claims that seem too good to be true, natural remedies don't work!

We did not ask for the "disease" to continue into our declining years but it came anyway. We just have to put a little more effort into life to enjoy ourselves.

Facing eternity came as a complete surprise to me but I believe I am handling the notion well.

"By the pricking of my thumbs, something wicked this way comes?"

The Masque of the Headless

For a long time now I have tried simply to write the best I can. Sometimes I have good luck and write better than I can.

Ernest Hemingway

Yup. That is "the Greatest". Muhammad Ali, well into his 30 year battle with Parkinson's. This photo gives me the creeps. He wears the PD mask.

Some PLWP develop another of PD's special gifts, a mask-like expression like Ali's. This condition is called Hypomimia, which is science-speak for "that guy can't smile."

It's a fact! Some PLWP can't smile or indeed, are unable to show any facial expression.

Why is that you ask?

Well, my optometrist has informed me that eyesight is not affected by PD. She is wrong but it shows how little even some competent specialists know about PD. The disease affects the nerves controlling muscles wherever they might be found. I am told there are 43 muscles in the face. A veritable arcade for a PD feeding frenzy. The 43 muscles act together to form facial expressions. The degree to which you develop the mask depends on (I think) how many of the muscles succumb to our common enemy.

If you have followed this blog, you might remember that I had an earlier encounter with the mask. I don't remember the date of the entry, but it doesn't matter since it has never reoccurred. Not all PLWP develop the mask. I have not and, touch wood, it's not going to get me in the future but if it does, I shall wear that mask proudly.

Remembering a short walk

Parkinson's is mostly a shaking disease. Not true. There are many more symptoms. For me, when I look back, the complete loss of smell was my first symptom, followed by terrible spasms in my right leg, excessive saliva and then the nastiest, an inability to speak properly due to a word-finding problem. Now, after 9.5 years, I have suffered attacks of two of the worst PD symptoms, balance problems and stiff legs.

I went to my grandson's soccer game and when a slight wind blew in, I had to put one foot behind me to avoid being blown over. I left just before half-time and, moving at glacial speed, I walked toward my car. I was so stiff, I could only take baby steps, almost coming to a stop. I could feel the crowd watching me as I forced myself to move. I was saved when my son ran to help me. We were successful in getting to my car. I drove home and went to bed. I am certain my brain was contemplating a serious bout of distress!

How dreary!

In the near future would I be looking for a walker, or a wheelchair?

I mean no disrespect to people who currently need either appliance, but I don't want to join your ranks.

The next day I awoke full of positive energy and the incident, with its negative energy, was forgotten, assigned to my catalog of woes.

Until now that is. Why did I choose to write about this? The memory of that short walk is weakening my stiff upper lip.

I will spend the next couple of hours, trying not to remember. Happily I will move on to more beneficial thoughts......... eventually

From the book "Changeless"

“Lady Maccon stopped suddenly. Her husband got four long strides ahead before he realized she had paused. She was staring thoughtfully up into the aether, twirling the deadly parasol about her head.

"I have just remembered something," Alexia said when he returned to her side.

"Oh, that explains everything. How foolish of me to think you could walk and remember at the same time.”

― Gail Carriger

It's a long way to go.

Johns Hopkins researchers say they have developed an experimental drug, similar to compounds used to treat diabetes, that slows the progression of Parkinson's disease itself—as well as its symptoms—in mice. In experiments performed with cultures of human brain cells and live mouse models, they report the drug blocked the degradation of brain cells that is the hallmark of Parkinson's disease. The drug is expected to move to clinical trials this year. (Medical Express, July 2, 2018)

And then there is this from Irishcentral.

Inflazome has developed a drug that cures Parkinson’s in mice and now plan to start human clinical trials.

Good news? It certainly is, if you are a mouse, but what about humans? Well, I see it as a positive step forward but I have my spidey sense nagging me in the undamaged part of my brain. Only 10% of experimental drugs make it through the last stage of clinical trials. Here are the 4 stages of a clinical trial:

Human Clinical Trial Phases

Phase I studies assess the safety of a drug or device. This initial phase of testing, which can take several months to complete, usually includes a small number of healthy volunteers (20 to 100), who are generally paid for participating in the study. The study is designed to determine the effects of the drug or device on humans including how it is absorbed, metabolized, and excreted. This phase also investigates the side effects that occur as dosage levels are increased. About 70% of experimental drugs pass this phase of testing.

Phase II studies test the efficacy of a drug or device. This second phase of testing can last from several months to two years, and involves up to several hundred patients. Most phase II studies are randomized trials where one group of patients receives the experimental drug, while a second "control" group receives a standard treatment or placebo. Often these studies are "blinded" which means that neither the patients nor the researchers know who has received the experimental drug. This allows investigators to provide the pharmaceutical company and the FDA with comparative information about the relative safety and effectiveness of the new drug. About one-third of experimental drugs successfully complete both Phase I and Phase II studies

. Phase III studies involve randomized and blind testing in several hundred to several thousand patients. This large-scale testing, which can last several years, provides the pharmaceutical company and the FDA with a more thorough understanding of the effectiveness of the drug or device, the benefits and the range of possible adverse reactions. 70% to 90% of drugs that enter Phase III studies successfully complete this phase of testing. Once Phase III is complete, a pharmaceutical company can request FDA approval for marketing the drug.

Phase IV studies, often called Post Marketing Surveillance Trials, are conducted after a drug or device has been approved for consumer sale. Pharmaceutical companies have several objectives at this stage: (1) to compare a drug with other drugs already in the market; (2) to monitor a drug's long-term effectiveness and impact on a patient's quality of life; and (3) to determine the cost-effectiveness of a drug therapy relative to other traditional and new therapies. Phase IV studies can result in a drug or device being taken off the market or restrictions of use could be placed on the product depending on the findings in the study.

The problem is there no typical length of time for an experimental drug to pass through the 4 stages. It can take around 10 - 15 years before it becomes available for human use. That is a long time for somebody, like me, with one foot in the grave.

Don't give up hope. Check out new drugs being tested Parkinson's News Today Lots of research being done all for the benefit of Parkies,

Who knew?

They are forever blowing bubbles

Am I a cynic when I question whether people looking for cures for Alzheimer's, cancer, PD and the like are not highly motivated? After all, if they find a cure, they are out of a job.

Yes, that is totally cynical...or is it? Progress is being made but slowly so it is hard not to be a cynic. The "disease" has been around a long time. It was given the name "The Shaking Palsy" in 1817 by Dr. James Parkinson who fervently believed a cure was possible if not probable.

Sorry Doc. It is now 202 years later and, guess what? No cures.

However, there is highly regarded research being done and advancements are being made. Dr. Oz's prognostication that "It will be cured within 10 years" may well come true. The problem is, he said that 10 years ago! Still, I remain somewhat optimistic and here a few things I have learned:

1. Currently there is no cure and there is no magic bullet that will slow the progression of PD.
2. It seems to me that luck, exercise and diet might possibly slow its progression.
   
3. Symptoms can be controlled by recognized drugs such as Levodopa/carbidopa and various dopamine agonists. Sometimes, unexpectedly, a drug such as amantadine will make itself useful
4. DBS can also control PD symptoms, if you don't mind a neurologist messing with your brain.
5. "Control" does not mean "cure" or "slow down". PD will be ever-present, attacking and killing off dopamine-producing cells.
6. Forget about supplements. They most likely can't hurt, but they can't help either.
7. "Cures" keep popping up on the Net making outrageous claims
8. I hope this will be a possibility.... and maybe lead to a cure.

Cheer up newbies. I am into my 9th year and the only visible signs of my dark friend is the occasional loss of balance. The secret to my success is luck and exercise. Oh, a good support group helps too. I am grateful for Rock Steady Boxing. Never heard of it? Google can help.

A friend of mine once told me, “Exercise is wonderful. I could sit and watch it all day.”

I Get it. I once held the same opinion but, he is not a PLWP.

I am!

Shoe & Ships & ...

“Who is more to be pitied, a writer bound and gagged by policemen or one living in perfect freedom who has nothing more to say?”

I am getting impatient! First I have not been cured (come on, get with it. You are very close.) and second, except for a few poems, I have had writer's block for several weeks.

when I was a teacher, I remember three signs I had hung on my classroom wall. You know, for inspiration. I can't remember who the authors were and I am too stressed to look for them but they know who they are and these are (close to) their words, not mine.

1. Leap! The net will be there.
2. Success is not the result of spontaneous combustion. You have to set yourself on fire; and lastly,
3. If you hear a voice saying "You are not a painter"; then paint, boy, paint and that voice will be silenced.

Now I am trying to inspire myself and have concluded that those signs lead to the truism that, when faced with a blank page, start writing and you will find your purpose as you continue to write.

Hence this catharsis.

I am into my 9th PD year and except for the fact I can't smell anything at all, a slight shuffle and the odd loss of balance, I feel perfectly normal. Why is that? You may ask.

Who knows?

The authorities have concluded that exercise is most beneficial to the process of slowing the advancement of PD. I agree. In fact, if you have been following this blog, you will know that I have have been obsessed with this concept for many years and you know what? I have hated every run, every weight lift, and yada....

I have fought my resentment and because of a touch of OCD I only slowed down when I could no longer physically be successful.

Then I discovered Rock Steady Boxing and I have a session tomorrow. I enjoy every minute, probably due to the atmosphere created by an enthusiastic and knowledgeable coach. She makes an hour's exercise pass quickly and I look forward to every session 3X weekly.

On to a different topic altogether, just so I have a record of the event. My entire adult family got a tattoo, the significance of which is our secret. It was my first tattoo and I was surprised it was so easy and painless. The only thing that I didn't expect was the artist telling me, "I don't do many septuagenarians. God, it's true. I am in that club now. Oh my God...a septuagenarian!

I had to look up the spelling of that word!

Wall Flower #2

The queen of the shades
Stands in the shadows
Lost in her mind and her moods
The tremors begin
She removes to the dark
And stands in the corner and broods

Her thoughts are a maze of one-way turns
She wallows in one & she sighs
Then waving her hand
She straddles the gloom
between despair and despise

She clenches her fist
her tremor retreats
For right now she is hoping to be
a part of the crowd
Then just for a moment
She feels what it's like to be free

For only an instant, she's normal again
But her happiness comes and it fades
She won't let them see
Their queen with a smile
For she rules the land of the shades,