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Friday, 16 April 2021

At last, hope springs eternal

The following are notes I made from a webinar hosted by the American Parkinson's Association ( search "Spotlight on Parkinson's: Searching for ways to stop disease progression"

Direct from the doctor's mouth (Dr. James Richardson, that is).   Does his description of the condition sound familiar:

      "involuntary tremulous motion, lessened muscular power, in parts, not in action, and even when supported, with a propensity to bend the trunk forward and to pass from a walking to a running pace."

THE Speaker, Dr. Standaert, does not mention the 5 stages of PD; rather, he talks of a progression of the condition (see below), a flow chart if you will, in which each "stage" flows into the next.  Symptoms differ from patient to patient and onset of those symptoms, for the most part, can occur at any stage; however there is are symptoms that are most common at each stage.   

Believe it or not,  a patient could have symptoms of Parkinson's without being a member of the PD tribe.  For example, from  the at risk stage(asymptomatic) into the Prodromal there are symptoms, signs, which that indicate the possibility of Parkinson's, such as loss of the sense of  smell (hyposmia), rapid eye movement disorder. a sleep disorder in which the sleeper has vivid dreams and a tendency to act them out, and joining this illustrious list, constipation.

Then following this, there is a stage of early Parkinson's, and this is where we see the typical features – tremor, bradykinesia or slowness of movement, rigidity which is stiffness, and fatigue is another symptom of early Parkinson's disease.

The advanced stage where you see impaired balance and falling, wearing OFF, dyskinesia. memory problems, and experiencing hallucinations.

Possible game changers - you will have to visit the webinar for full and accurate information but I can tease you with the fact that at every stage, scientists are working on procedures to slow down or even stop the progress of the "disease".  It is easy reading and is very uplifting. I have to tell you, it raised my spirits and that's not easy to accomplish.


Sunday, 11 April 2021

PSP - BE GLAD YOU HAVE PD

Progressive Supranuclear Palsy "PSP"

 

I have a friend whose husband died from PSP. In all my reading, I had never heard of such a disease.  It is rare, with estimates that between 3- 6 out of 100,000 people will develop PSP.  More men than women are victims  and onset is usually after age 60.

 

PSP is Parkinson's on steroids.

 

PSP victims suffer with problems of physical balance,  eye problems, anger and depression, apathy, problems with speech and swallowing, and movement challenges. 


Sounds a lot like PD, doesn't it, and indeed, it is often misdiagnosed as PD.

 

It is not PD, so stop checking off your symptoms.  PSP progresses more rapidly than PD and rarely responds to PD drugs.  Tremors rarely show in PSP.   

Also, people with PSP show accumulation of the protein tau in affected brain cells, while people with Parkinson’s disease show accumulation of a different protein, called alpha-synuclein.  That ought to convince you that you have PD and not PSP!!!! 

Learn more about this insidious condition 

 <href="https://www.ninds.nih.gov" >PSP</a> 

Monday, 29 March 2021

There's a light, a certain slant of light

I came across Dickinson's poem about a slant of light and what I discerned her topic to be all about life's despair.  It momentarily made me feel a bit lousy (I liked the poem  It rhymed!); but, as I thought it through, her slant of light was a winter light and the poet probably had the blues.

When I awoke this morning, I saw a slant  of light, but it lifted me up.  It was a spring slant and as I lay in bed, I thought of my life having a positive slant.  Sure I have had a tragedy, the death of my wife set me back and I still carry that pain, and then there is living with PD,  followed by the death of 4 good friends.  Such circumstances should floor me and have me wallowing in Dickinson's despair, but it doesn't. I have a family that keeps me high - three kids, four grand children, a daughter and son-in-law all bring me joy and keep me out the pit.  Also adding to my positivity are my brother (his generosity is boundless), his family, my sister and her family and a group called the Shilobrats, particularly those who correspond regularly, almost daily, (www.shilobrats.com), all good friends from my youth.

And lastly, I finally found a partner who got me going on my poetry.  Without his help, I would never have got around to having a book of my poetry published (due out in summer) and that project has kept me focussed on matters other than Dickinsonian slants of light. 

To hell with PD!  I feel relatively good, physically and mentally, right now.

                              "Action is the antidote to despair" - Joan Baez

Friday, 26 March 2021

“All right everyone, line up alphabetically according to your height.” – Casey Stengel

 Sometimes I feel that Casey Stengel is watching over me.  Instead of avoiding symptoms, he leadeth me into them; you know, just to see what will happen.  I have tested many of the myriad symptoms of the evil PD.  Here are some that I am acquainted with:

tremor - initially only my right hand, now both hands and forearms.  Fortunately, one or all of the drugs I take, keep the tremor still. 

slowness of movement - substantial - the tortoise would have no difficult beating me in a race.

Falls - I've had a few, but then again too few to mention.   3 or 4 doozies!

Festination - every time I stop after moving forward.  Not too bad if there is something to stop me, like a wall or tree.

Freezing - not so much, unless you include jumping where I can't get more than an inch into the air and sometimes not at all.   Ironically, I used to coach high jumpers, good ones!

Muscle cramps - you bet, but I can control the severity

speech problems - Oh yes - reduced volume. monotone  and just to make sure I am upset, word finding difficulties.

Inability to write - in spades.  Even I cannot read the scrawl I produce.

Hallucinations - maxed out - see November 10, 2020 entry         

Right now my disease is in a holding pattern and I dislike thinking about what is to come, but in the famous words of the great Casey Stengal:

        "Never make preditions, especially about the future."

Monday, 15 March 2021

Was it fate or stupidity

Sorry Doug. Do you think your original issue was bad water or dehydration or did dehydration come from going without water from laying on the floor for so long without water? Definitely consider a medical alert fob. Hang in there buddy... you remain our canary in the coal mine and we are grateful for your insights.

This comment was made by a loyal reader in response to "The Walls ...tumbling down" . I do appreciate his input; it is insightful and often causes me to look deeper into myself.  Here is my response to his inquiry:

We are reputed to have the best water in the world, so I doubt "bad" water was involved.  The doctors tell me I was dehydrated so I guess I was.  I thought I did quite well on fluids, but I guess I didn't.  I now take in 64 oz  of water per day and I feel better.  I used to include sugar fluids (mainly coke). I don't think that helped.  I can vouch for the fact that sugar liquids fatten me up and therefor are not suitable replacements for water.

I think lying in one spot for so long caused all the problems but dehydration was a condition precedent.

Something weird happened.  I thought I was hallucinating when the doctor introduced himself as "Hi, I am Doctor Seuss".

Here we go.....was my initial thought but my daughter assured me he really was a doctor with the last name Seuss.  Thank goodness!  The last thing I needed was an hallucination.

I do have a medical alert button, state of the art.  I can't sleep with it on, too uncomfortable.  Invariably, I forget to wear it when I wake up. In fact, I am going to go and get it and put it on right now.

Thanks again

PS - didn't the miners only know there was poison gas in the mine when the canaries died?  But, I get your drift.

Sunday, 14 March 2021

AND THE WALLS CAME TUMBLING DOWN

 I was up, then suddenly down.  I tried to make it to my bed but my left arm was devoid of strength, consequently, I had to "inch worm" across a carpet which had the consistency of sand paper.  I couldn't reach my phone. so I just lay there, and lay there for about 16 - 20 hours, every so often sleeping.  When I gradually got to look in a mirror, I saw a monster.  My face was all cut up. My daughter called my neurologist (a friend of hers) who advised her to get me into the hospital  ASAP.

OK, I will humor them and go to the hospital even though I know that the cuts are superficial.

 Turns out the doctors weren't concerned about the cuts. They were concerned about the length of time I had lain in the same position.  They did a blood test and whatever it was they found in my blood should max out at 100.  Beyond that max is dangerous.  My count was 16,000.

"That can't be good."

For 2 solid days I was on IV hydration and I emerged feeling good.  Let that be a lesson to all.  I read that nearly a billion people a year die from unsafe water.  I don't intend to be one of that billion.  I am going to get drunk on water from now on.



Saturday, 6 March 2021

The National and Walter Gretzky

 The National news reported last night that Walter Gretzky, father of superstar Wayne, died recently "after a long battle with Parknson's Disease".  I hope the implication was not that PD killed him.   He may have had a long battle with PD but it did not kill him.  People die with PD not from PD.  

Just a clarification.

Every man's death diminishes me, for I am involved in Mankind.