You can’t beat PD but you can outsmart it. Humor.

My husband let me trim his hair with clippers and scissor comb, tremor and all. Doesn’t look too bad – he is a brave man

I frequently have my medication alarm go and unless my meds are immediately at hand I get diverted on my way to get them.

My brain and my tongue are disconnected. I know what I want to express, but I can’t find the words during a conversation..

A coworker came and said to me ” Could you be any more annoying?” So the next day I wore tap shoes.

I remember how to play every song I ever learned to play on guitar and the lyrics as well..I just forget where my guitar is :-)..music is deep in your brain.

We have to set alarm for every 2 hours which sometimes makes me feel I have little freedom to do other things. Often I forget to take my own med and I am not the one with Parkinson’s!

 I write a lot of post it notes to remind me of things i have to do at a specific time. Then i cant always read what i have written more like scribbled.

 Our wishes go out with you that you can find the magic words that help catapult your love off of the sofa and out on to the pavement for a nice walk and a great chat! 

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(These last 4 are excerpts from a blogger’s entries…I ‘follow’ed her, but don’t currently remember her name.)

Many people in the Pacific island of Guam have developed Parkinson’s Disease, due to feasting on flying foxes, a species of bat that can be as big as six feet across. This is because the bats eat cycad seeds which contain a potent neurotoxin ….. Not to worry – I’m not about to start eating them!

Then there are many bat related figures of speech such as “The cat took off like a bat out of hell.” . This isn’t quite how I would describe my speed nowadays.

Or to show no signs of distress even when something bad happens or something shocking is said e.g. Sam didn’t bat an eyelid when the mechanic told him how much the car repairs would cost. This sounds a bit like the Parkinson’s mask.

As we discussed the language barrier I was reminded of an amusing little story from more than thirty years ago. We had some friends who were desperate for children and eventually adopted two children from Sri Lanka. Our friend told his mother and father who lived a long distance away that they had adopted a baby girl just a few weeks old and invited them to come to stay to meet their new granddaughter. Knowing how prejudiced they were he omitted to say where the baby came from. He thought his beautiful new daughter would melt even the hardest heart and he was absolutely right. Cradling the infant lovingly his misty eyed mother said “She’s so perfect and lovely but whatever will you do when she starts to talk? You won’t understand a word she says!”

Ten days

I realized today, it has been ten days since I reported in!

I have continued to do very well, with the combination of B1 [650 mg] and Amantadine capsules. I don’t find myself running down and feeling in need of a pick me up!

My routine when I get up: take 1 capsule Amantadine, Plug in sauna and set heat to 140 degrees, eat a serving of yogurt set timer for 1/2 hour, spend 30 min in the sauna. Then I take the C/L and Shower. Then, after I’ve dressed for the day, I spend 10 minutes exercising on the Whole Body Vibration machine… [equivalent to an hour in the gym.]

After breakfast, I have been working in flower beds and garden. We still have bell peppers, lettuce, Swiss chard, onions, and a few tomatoes. I mixed up the apple cider vinegar, salt and dish soap recipe and put it in a spray bottle. I have to tell you. IT WORKED!! I feel … so much wiser. 🙂

We have been able to keep busy while sheltered in place, as our daughter has purchased supplies, as requested, to keep our projects on track. Plus, we finally received a cable internet service, so we have been moving things around to turn a space into an office for our daughter, so she can work from home 4 days a week, when Disney is ready for her back.

A gentleman in a Parkinson’s community chat room tries to share some clean humor each time he posts; today’s post follows

A frog goes into a bank and approaches the teller. He can see from her nameplate that her name is Patty Whack.

“Miss Whack, I’d like to get a $3 0,000 loan to take a holiday.”

Patty looks at the frog in disbelief and asks his name. The frog says his name is Kermit Jagger, his dad is Mick Jagger, and that it’s okay, he knows the bank manager.

Patty explains that he will need to secure the loan with some collateral.

The frog says, “Sure. I have this,” and produces a tiny porcelain elephant, about an inch tall, bright pink and perfectly formed.

Very confused, Patty explains that she’ll have to consult with the bank manager and disappears into a back office.

She finds the manager and says, “There’s a frog called Kermit Jagger out there who claims to know you and wants to borrow $30,000, and he wants to use this as collateral.” She holds up the tiny pink elephant. “I mean, what in the world is this?”

(You’re gonna love this.)

The bank manager looks back at her and says, “It’s a knickknack, Patty Whack. Give the frog a loan. His old man’s a Rolling Stone.”

(You sang it, didn’t you? Yeah, I know you did.)

Never take life too seriously.

★♫.•Pass it on!! Give someone else a reason to smile. ♫★

p.s. to my followers: I erred when I said 650 gr it should have said B1 [650 mg]

Typing with Parkinson’s

What follows was written by Omotola Thomas. Funny and sad at the same time. She has had PD longer than I, and her frustrations are showing.

Typing under the influence of Parkinson’s: 3 things your doctor didn’t tell you.

1. Typing will suck! Don’t try to fight it…. it will progressively suck! Did I just hear you say “Well, I can just use voice-to-text“? Sorry to burst your bubble, but as your voice gets weaker with PD, so will the ability of the V2Txt to decipher what the heck it is you are trying to say. If, like me, you are prone to ending your messages with “xx” to indicate the 😘 emoji, your precious dirty-mind of a V2Text-er will instead type “sex sex“… And when, in horror, you hurriedly try to delete it, your tremoring fingers will accidentally hit “send“. Imagine meaning to type “Cool… Let me know if you want to do it xx” 🥺🥺🥺

2. When you see your friend’s distraught Facebook post about her dog that just died, you will try to show your sympathy by clicking the “😢” emoji, but instead, you will click the “😂” emoji , and each time you frantically try to change it, you will re-select “😂”. If you are wise, you will accept your fate and stop trying because if you continue, somehow… (and I cannot explain how) the next thing that will happen is that you will end up “activating” and inadvertently sending a highly inappropriate GIF. The frustrating thing is that when you do actually want to send a GIF, you will not know how to. 🤦🏾‍♀️🤦🏽‍♀️🤦🏽‍♀️

3. When someone sends you a WhatsApp message, and you proceed to respond … They will see (on their end) that you are “…..typing”. They will see this “ …..<insert your name> typing” for a very long time, which will indicate to them that they are about to receive a long message from you. imagine their irritation when, after staring at “…is typing” for 6 1/2 minutes, your reply comes in and all you have managed to type is “Ok. Got it 👍🏾. “ 😐😐😐

April 11, World Parkinson’s Day

Today is World Parkinson’s day and it’s an opportunity to raise awareness for Parkinson’s disease.

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I copied these thoughts which follow… from various other blogs.. sorry I forgot to write down who to credit. 😦

“Parkinson’s Awareness Month and I have questions. Who is it we are trying to make aware? What is the goal of this Awareness Month? Is it to make others aware of the disease, accept the disease or to better understand the disease? However I believe that, being aware , accepting and understanding are all totally different things! Too often you may have experienced Parkies that are aware of and have accepted the disease, without understanding what the disease brings to them. Those of us with Parkinson’s could do a lot better at becoming more aware of how we accept and understand the disease. You may have met fellow Parkies that have given into what the disease may bring before those limitations are even presented to them. They are certainly aware of the disease, they have accepted the disease but their understanding of it has let the disease take a part of their life from them before it had to happen. Does our own awareness of Parkinson’s grow as the disease progresses? If so our acceptance and our understanding must grow as well. So to me Parkinson Awareness Month is for; 1:Those who don’t have it 2;Those caregivers that care for us. 3:Those of us that have the disease. Put them in any order you want !”

But before I discuss those, I want you to think about this: “researchers say that by the time a person with Parkinson’s disease starts experiencing motor symptoms, they have lost between 60% – 80% of their dopamine producing neurons! “

“So, let’s talk about Parkinson’s disease (PD)… actually, I should be more specific – let’s talk about dopamine. To those who are not familiar with PD, dopamine is said to be the neurotransmitter that is deficient in PD patients. This brain chemical is responsible for many important human functions.”

What that means is that, in my case, as of summer 0f 2014 (my first recollection of weakness in my legs), I had lost way more than half of my dopamine producing neurons. This was over 5 years ago.

“Let’s go back to dopamine’s role in human functions – it plays a role in movement, memory, cognition, mood, attention, and behavior. Now, I know the relationship is not precisely linear, but if a person with Parkinson’s disease (PWP) has lost the majority of their dopamine producing neurons – neurons that produce the brain chemicals responsible for the aforementioned functions, I think it stands to reason that even if they gave a 100% effort all the time in these areas, they would still come up short. This is not a justification for bad behavior nor is it an excuse for a PWP not giving their best effort. This is simply raising awareness about the difficult limitations PWP are confronted with. If we, PWPs, are only operating with a small fraction of this all-powerful neurotransmitter then our mood, our cognitive abilities, our behavior, our drive, our attention to details, our addictions, and many more “ours” are all bound to be impacted, right? When it comes to our abilities to perform all these functions, rest assured that the playing field is not level – not even by a long shot. Think about that.– “

Quality of Life (made me laugh)

When you come to a fork in the road, take it. originally posted by Ian Robertson

“How can we understand the words “Quality of life” when the definition of quality means something different to us all ? My doctor kept telling me “This or that would improve my quality of life”. I asked him, “What he thought was bad about my quality of life at the present time?”He replied “Nothing that he knew of, but this drug or that treatment would improve it.” That confused me.

What defines my quality of life?

  • Physical Movement problems
  • Communication problems
  • Sleep problems
  • Lack of Ability to dress one self
  • Can’t Feed one self
  • Limited Relationships
  • No Freedom to travel
  • Bladder or bowel control problems
  • No job

At one time in my life I had all of the above.

But heck, I was only one ! Yet I have had a terrific 61 years since then! So is quality of life, measured by what has happened to me in the past, and how as of today I have supposedly bettered myself from yesterday? If so, then that means I alone have the ability and control to make my life today, better than my life yesterday. With that ability and knowledge, My quality of life, is What I make it to be!I can’t control my future. I can only control the “NOW’. Make my”NOW” the best it can be. Always give My best of what I have now! It may not be the best I have ever done, but it is the best I can do now. By always giving my best today, I will ensure that I have quality over my yesterday. But then again what do I know? I have a chronic brain disease!

Sloth… but not slothful

John & I have shared housing accommodations with a daughter, Emily and her five children for the past couple years as my Parkinson’s symptoms have become more pronounced. The seventeen year old, Megan, has been aware and come to my rescue when I lost my balance in the pool, needed help to carry things, open doors or bottles, etc… She also, kindly, lets me know when I have food on my chin. 🙂

I knew it takes me a long time to eat, but I guess I thought it was just a chewing and swallowing issue, until Megan observed… “Look, grandma is eating like a sloth!” At that point, I realized how slowly I was moving the fork toward my mouth. I had to laugh.

Emily’s children know she likes Sloths so they have gifted her with a ‘sloth shirt’ and stuffed plush sloths. So when she was showing me her collection of Valentine Sloths, naming them off…Here is the daddy, the mommy, the baby… I said “And you have ME” 🙂

Yes, they have me… and I have them.. my family are my tribe… my wolfpack… my Valentines

Slothful mean not easily aroused to activity. .. lazy, suggests a disinclination to work or to take trouble to do anything..  Apathy seems to fit here. A slothful person doesn’t have a claim on a good work ethic.

On Valentines Day, 2019, I have an appointment to have my condition evaluated at the University of Florida Movement Disorders and Neurorestoration Fixel Center. To demonstrate MY good work ethic I have compiled a list of questions I hope to ask.

I’ll try to not drop the ball… and report back on the feedback I receive.

Humor

I belong to an online community of Parkies and their care givers. It is a great source for information. [The Invigorated Community] I wanted to share a bit of their upbeat positivity with you. Yesterday, a person asked if others were experiencing brain fog. What follows is a short bit of the responses:

M… Yes, they list concentrating as a symptom. But I think it can get ‘mixed up’ with other symptoms such as depression. 
And the fact is we’re all getting older and that’s just a fact of life. 
Wait…..what was your question?

M… Sorry, I don’t mean to down play it. But, We do need to remember to keep a sense of humor.5M

D… yes we do for sure. I must say, in the morning when I am shaving I laughed, every time I move the razor, I get really bad tremors in left hand, and when I stop, the tremors stop. I have fun with it. 😂1M

M… It also saves the investment in an electric toothbrush.

D… a sense of humor is very important I think. Some really cool things are starting to happen, like a little bit of a drooling from the left hand side of my mouth when I am taalking… People ask me, are you okay? I say sure I’m feeling fine, seems like I have too much saliva, would you like some?😁