A laugh a day can help keep PD.....

People with Parkinson's can get so severely depressed that they want to kill themselves but fortunately, apathy is another key feature of the disease so.... they just can't be f@#%ing bothered!!

Humor at the expense of parkies. I love it; just as I love jokes about Canadians and lawyers. What if there were a joke about a Canadian lawyer with PD, such as:

He watched the two men, one with what appeared to be a small briefcase, deplane and shuffle across the tarmac.
"Is it him?" The rich lady asked anxiously. "Does his right-hand shake uncontrollably?"
"Yes"
"And has he brought an Uzi to kill me?"
The two men were easily visible. A big man, talking on a cell phone, bumped viciously into briefcase man.
"I am so terribly sorry," Briefcase man said to the bumper who openly slipped him the bird.
"Do you see any weapons at all?" the rich lady asked
"No ma'am. It is worse than that. He appears to have brought his Canadian lawyer.

All right, all right, so it isn't very funny, but you can see my attitude. Some of my symptoms make me laugh. Check it out.

• Why can't I smell anything? Not even a dirty diaper and yet I would need oxygen to change the baby?
• When I am standing up and I instruct my brain to make me jump, I can't get off the ground but I can skip rope easily?
• Why has my voice all but disappeared? It leads to humorous situations since my wife is hard of hearing

Laughter makes living with PD easier and have you noticed tremors stop when you have a good belly-laugh and don't reappear until some time later.

It's all part of being positive which, along with exercise, will slow the rate of advancement of PD.

Trust me. It's all good. I am about to enter my 10th year.

Sappho - She's not all Greek to me

I can't understand the rage of the haters. Those people who cannot deal with sapphic ladies. I overheard a couple of young guys disparaging a group of lesbians. The guys said nasty things that could only be heard by those nearby. The lesbians were not within their range and gleefully went on their way but I thought I should say something. I did not; after all, they were younger and far stronger than I.

I have a good friend who is a daughter of Bilitis and a more loyal and sympathetic friend you will never find. She will be reading this and to her, I apologize for not saying something to the haters but, in my own defence, I didn't sign up for a suicide mission.

Another one bites the dust

"Alright, Almighty one. Enough is enough! I sent in colon cancer screening kit and they found blood in my feces. Of course, it doesn't mean cancer. In fact, I console myself with the knowledge that PD causes me constipation and the effort to expel the "you know what" causes me great stress and blood. I think I may have hemorrhoids. One can only hope.

Did I hear God giggle?

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?