It is almost the end of summer. Oh well, life goes on.

Lately, we have been attending a few delayed family functions.

As well it is nice to see all the people out and about. From one of the people in the high-risk group. High-risk being, I probably have a 40% chance of surviving a Covid case. Even with the vaccine. Please get vaccinated.

 

Okay, back on topic.

Having lived the last 8 years living with Parkinson's, watch friends pass away. Friends who are the same age as I am.

Also having met a lot of fellow Parkinson's survivors. And the discussion usually centers around, what symptoms do you have this week. What meds are you taking? What side effects are you having?

Lately, I have noticed several of my relatives and others who seem to be showing some of the signs of Parkinson's.

Let me say this.

1. Parkinson's is not a death sentence. No mistake about it will change your life forever. 

    I am proof, while you can't stop the progression you can slow it down.  But you will not die from             Parkinson's. 

2. There is no shame in Parkinson's. you did nothing wrong. So don't let your or insecurities manage your life. 

3. If you stay active and positive(very hard to do ) you can live a long life. 

Here is a list of early Parkinson's Symptoms 

If you think you have any of these please, please see you Doctor and ask to see a Movement Disorder Specialist or a Neurologist.

  

You will not have all the symptoms. but even one is enough for you to get checked out.   The tough part is the symptoms will change, week to week or  even day to day. 

The symptoms are separated into two parts 

Motor and Non-Motor

Motor

1. Tremor; Known as a restive tremor .Which means your hand or foot only shakes when you are not using it. The tremor does not impair moment. 

And is easily hidden form other people. 

2. You will notice that a person will only swing one arm when they walk.  For me it was the right arm.

3. You lose you sense of smell. 

4. For males. you start to experience Erectile dysfunction.

5 Some people develop Dystonia. This is where your muscles decide to get together and go on strike,        causing sever stiffness. 

Non-motor 

1 Depression 

2 Mood swing, quick to anger.  

These are just some of the symptoms. 

The trouble with PD is that everyone is different. There is no perfect mold. 

You think you are hiding the problem , if you ignore it, it will go away. 

IT WILL ONLY GET WORSE

See your doctor 

Get on the meds 

The sooner you get on the proper med schedule the better chance you have of delaying the disease.

I am not a doctor and I did not play one on tv. 

But I am a Parkie. 

And I see what I see. 

If you know of someone or yourself might be showing signs, Feel free to message me on Facebook

And remember IT'S ONLY INCONVIENT 

Randy  

 

 

10 things to help you make it thru the work day with Parkinson's Disease

 Good morning, or afternoon, or evening, depending on what time zone you are in.

For those who, are unfamiliar with who I am, (judging by my site visits, there are a lot of you)

my name is Randy Wilcox, and I am a Parkie.

Personal:

Parkinson diagnosis in 2013 (8 years) 

Age 62

Married, 42 years 

Professional 

Southern New Brunswick Office Equipment Ltd. for 20 years 

Position: Sales Consultant (Salesman)  business to business 

Products: Ericson Telephone Systems, Toshiba Copiers 

In the office equipment industry for 35 years. 

Okay got the qualifications out of the way. 

What follows are only my observations about myself, every Parkie is different.

General Truths:  You, are not the person, you were before the diagnosis. That person is gone.

       Who is left, is who you are  TODAY .  And today you can be anyone you want to be.   

Two rules I try to live by 

a.) It's only inconvenient   b.) Enjoy Every Sandwich (Warren Zevon) 

1. Be up front with the company you work for, and your supervisors. Make sure they know and understand. Let them know this is a long term disease and that you plan to continue doing your job, and for how long. 
2. Let the  company, and your supervisor, know if you have any current limitations.  
3. Know your time. Every Parkie has a time of day when they are at their best, mine happens to be mornings. Tell your supervisor what  time is best for you. I am a morning person,  I am at my most creative from 8 am to about 1 pm. 
4. Schedule your appointments for your best time of day. I do not make closing calls in the afternoon (I give shit away).
5. If you still have to meet in the afternoon, apologize before hand. Defer complicated questions until tomorrow, or bring along a buddy to help you out. 
6. Avoid answering the phone during your down time. Voice mail is your friend. Listen to the message. Forward it on to someone who can help, if urgent. Otherwise answer the next day. 
7. Don't try to answer complicated emails on your phone. Anytime. I will email back and tell them I will respond in the morning. It gets too frustrating, and I  usually end up sending a message that makes no sense.
8. Laugh, have fun. Yes, through no fault of your own you have this terrible disease. But life is too short, don't take yourself so seriously.
9. Understand there will be days when the meds won't work, or the stress levels are overwhelming. If you can go home, take nap.  Close your office door, take a nap. 
10. Be honest with yourself. Be honest to your employer.  Know when to say no, not today. If you can't do something tell them. 

I have found most people are understanding, as long as you are honest with them.

My clients, all know who I am, and what I have. If they ask I give them honest answers. If I am not at my best at this particular  point in time I tell them.  

I have gone into a meeting and told the client today is not a good day, can we reschedule. 

So keep working as long as you can .

Keep to your long term goals regarding retirement. Even step them up if you can. 

Remember "It's only a phone, and they will call back." 

Courage

 

cour·age

noun

noun: courage

the ability to do something that frightens one.

"she called on all her courage to face the ordeal"

strength in the face of pain or grief.

"he fought his illness with great courage"

I have recently thought about this word. 

What caused me to think about courage. 

Is  

Myself, and two other Parkies were asked to participate in a brainstorming session. 

One of the questions : What have you done lately, that has given you the most feeling of pride. 

Answer : At the end ( no peaking ) 

So back on topic 

cour·age

noun

noun: courage

the ability to do something that frightens one.

"she called on all her courage to face the ordeal"

strength in the face of pain or grief.

"he fought his illness with great courage"

What is it really.  

For different people it is different things 

For the Parkie  

Is it just being able to take part in normal day activities. Being able to go to work. Do the job. Even when your meds are no longer working, and it takes ten minutes to type a single line of text. Because you have to repeatedly go back and retype the words. 

Going to meet that client at 2:30 pm. Even though your meds stopped working a hour before. And the ones you just took will take another hour to kick in, maybe. 

It's getting up this morning knowing today will be no different than yesterday, 

It struggling to get motivated when going to the gym , or getting on the stationary bike, or what ever instrument of torture you prefer.  

When after going to the gym  for 8 to 10 years, and your not seeing an improvement. Or actually feel like you are sliding backward. And still trying to go to the gym. 

It's hanging on until 10 pm. to get the only relief  ... Sleep 

For the Care giver

Courage is watching someone you have loved for forty- fifty years. Slowly slip away.  

Watch as PD changes that person to some-one you no longer know. 

Encouraging them to remain positive. While remaining positive yourself in the face of everything above. Comforting, when at the end of the day. The PD is making my toe curl, my wrist burn, My skin crawl. 

It's accepting the depression , the apathy, the ICD crap. All the side effects that go with all the drugs a Parkie has to take on a daily basis. 

Now take everything above, and multi that by 365 days. With Parkinson's there are no days off . 

 

Answer to the question  

All three of us answered the same 

Just getting up this morning. Knowing I have that 2:30 pm meeting and  I still go. Or what ever you ay have to do.  That I am still able to work. Putting in 8 hours in if I have to. Taking an active part in society.   

I also want to acknowledge all those suffering with a similar fate as a Parkie. Or worse. Their struggle is real as well.

But this is a blog about PD 

Remember "It's only inconvenient"    

SuperWalk

Hello to all my Parkie buddies....... oh and the rest of you non shaken norms too. (They are shaken but not stirred.)

For those who may be new to me my name is Randy Wilcox, or as my blog handle says (do they still say handle?) The Randy Parkie. This may come as somewhat of a shock to those I have met in the last few years, but I HAVE PARKINSON'S DISEASE. A whole 7 years now. But they say to me "You look marvelous baby,  you don't shake, walk stiffly, have a cane, or a walker."  A lot of drug research, and a lot of drugs in me. Some exercise and some active hobbies (golf)  have helped.
You know it's hard to convince CRA you are eligible for the Disability Tax Credit after you hit a 250 yard drive.

Boring part:  Parkinson's Disease  is an INCURABLE  degenerative neurological disorder.
Layman's terms, "You's got it, and it ain't gettin better". However, in the last 5 or 6 years, thanks to research and donations,  there have been advancements made in recognizing the symptoms of PD and developing drugs and research into easing those symptoms.

For the last 7 years Saint John has held a Parkinson's Super Walk, the last 5 years having  been held in Kings Square. And as fund raisers go we did pretty well. But the whole pandemic thing has forced some changes.

Nonprofit agencies have been hit hard during this pandemic, and they do so much with so little.
Now is the time to give back to them.

SO WHAT  CAN DO WE DO or WHAT CAN  I DO you may ask yourself?

This year's Super Walk is on Saturday, September 12 with  live online national opening ceremonies at 11 AM ET.

But the work starts now.
Go to  Parkinson SuperWalk  (I can't believe I got the link in. It actually works. WOW!)
Now is the time to get those donations.

This is not just for those who are affected with Parkinson's and their families, anyone can walk and/or donate.

While on the site, decide whether you want to walk and get your "Walk in a Box", or simply donate.
Look around the site, there is a lot of information there.
If you do not have a printer to do the t-shirts, and are in the Saint John Region, email me at wilcox@snboe.com. and we will see how we can help you out.

For those with special marketing talents email me and I will forward the template for a 12" x 40" banner, one per walker bubble. You do the design and I will get them printed. We could get children under 8 to drop off hand made posters as well

Here's what we are going to do...

On September 12 starting at 12:00 noon we will have a station set up in Kings Square, Saint John, NB. where folks can drop off donations they have collected and register there family bubble.
Please stay within your family bubbles, then go forth and enjoy the uptown while waving your posters and banners!!

And don't forget to stop and have lunch, help a local merchant out.

Most importantly bring the following noise makers.....

Jing Tinglers

Flu Floopers

Tar Tinkers

Who Hoovers

Gar Ginkers

Trum Tupers

Slu Slumkers

Blum Bloopers

Who Wompers

Zu Zitter Carzay

Who Carnio Flunx

And let everyone know you're a Parkie!!!




 


 

Shake, Wobble and Roll

I am writing this at 6:44 pm on a Wednesday. I think it is august 12th. I started out correcting my typo's , but what the hell let her fly.
I have been takigmusic playing on in the back ground helps to coordinate the wobbless.
Makes it look (to me at least0that I am boppong to the music.
Not..
As well thisI am typing as it comes fro my brain .
right about now I would gather all my inner strenthg my meds every 3 hours. when I srARTED THE WOBBLES WERE VERY slight and only for a little while.
Well let me tell you that is not the caes. Today,. right now i ma in full wobble. Having the

Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson's itself. Rather, they are a complication from some Parkinson's medications.

Okay enough of that crap.
What you just read was an experiment. What would it be like to just let go. To forget about trying  to seem normal.
Letting my freak flag fly so to speak.
This is my first experience with  dyskinesia. Oh yeah I've had the wobbles from time to time. Sometimes when we were out at a wedding, or a dance, and the music was loud I would find my head bobbing to the music. On the dance floor I just looked like the other old white guys dancing. Only a little more whiter. In the car again I would find myself moving to the music.

When I was first diagnosed I told myself there was no way I was going to be like Michael J Fox .

I don't know which is more tiring, keeping a handle on the wobbles or working through the "off funk".

Off Funk you say? What's that ??
Unfortunately there are no words in the English language that do justice to the Off Funk. But I will try.  Imagine you are standing in front of 5 doors. Behind one of the doors is your heart's desire. Behind another is your worst nightmare. The rest have nothing. You have only one choice.
Oh, and you only have a minute to choose. And there is a large man with a large knife  behind you.
NOW PICK he screams! And that instant of panic. that's it.
Now expand this to every little choice. What to have for supper, to go for a walk, go to bed, which turn to take.
And with that many choices at once the brain shuts down. And you just stare at the doors.
This happens sometimes three or four times a day.
If I get a day with only one time it's a good day.
Back to the wobbles

I am at the stage that if I concentrate I can contain the wobbles. Oh if you look at me you can tell I am wobbling. I think I am hiding it, but most people are too polite to call me out on it.
Be right back.

Okay I'm back. Had to get Nick from work.
Where was I?
Oh yeah the wobbles.
I wish I could take credit for the "wobbles", but that goes to the bravest, most upbeat,-despite having everything bad thrown at her, person I know.   Pam.
And I think wobbles works a lot better than dyskinesia.
As the definition says, the wobbles are not a symptom of Parkinson's, they are the price you pay for trying to get back to normal.
Basically.
You take the Levodopa to add the dopamine that your body no longer produces back into your brain .
By taking the Levodopa one can move, talk, play piano, play golf.  Everything you tend to take for granted.
But, there is always a but.
The way it was explained to me (to be said in an east Indian accent) as the disease progresses over time, in order to keep moving, you have to take more Levodopa. And with long term usage eventually your body cannot absorb all the dopamine and some of that excess dopamine goes to parts of the brain it should not. (Stop accent)
For me, this happens later in the day. Lately around 6 pm to 7 pm. Tonight is worse. I am still wobbling and it is 8:30.

Eventually the wobbles will be all the time. I have learned to accept this now. Seven years ago not so much.  I suppose I could try to cut back on my Levodopa, but it feels so good. That feeling of not feeling the Parkinson's. To feel like you are normal.  To be able to just sit down anytime at the piano and butcher Layla. And not have to wait for that perfect moment when your fingers will move.

It's now 9 pm. My last dose at 6 pm is wearing off.
The wobbles have pretty much gone away.
I am exhausted.
I know what you're thinking ... no way it took him 30 minutes to type one paragraph .
Some days yeah it does.

Hey Micheal "whats shaking "

Catch up

Well

I just looked, and it has been a while.

My last post was March 15.

I was talking about the amount of drugs I take in the run of the day. I was still on the Movapo drug trial.

The amount of PD related drugs were working, but I still was not making it to the next dose 4 hours away. In an ideal PD world the medication you take at say 2 pm will last until 6 pm, with you just starting to feel the tingles of the 2 pm dose wearing off at 5:45.

I wasn't making it in the above example. Take the drugs at 2 pm, the drugs were completely gone, out of my system, by 4:30.

As a result, life was a series of wake up,  take the drugs, feel okay for 2 hours, be off for 2 hours,

repeat.  Go to bed at ten pm.

Oh I lived during these times, but not very well.

It was hoped the Movapo would provide relief during the off times. But the results, while encouraging at the start, proved to have too many complications.

1. It brought on Dyskinesia, which is no fun in anyone's life.  Although, a little head bopping in the car is okay, and it gives you some funky white guy dance moves on the floor.

2. It was making me feel weird. Can't describe it, it was just weird. So we stopped that.

So what do you do?

After consulting with my doctor. I thought I should go half dosage every 2 hours.

His suggestion. Keep the dosage the same, add one more time.

So now instead of 6 am, 10 am, 2 pm, 6 pm...I take the same amount 6 am, 9 am, 12 noon, 3 pm, 6 pm.

I have been on this regime for the last 2 months.

I must say combined with a lot of physical activity, namely golf, and a lot of work on the house,

most days I feel pretty good.  I can almost remember what normal feels like.

So there you have it.

For the few Parkies that will read this, I hope your take away.is...(Isn't that the stupidest thing?  Your take away... it's not left overs.) don't be afraid to try things. New things.

I tried the Movapo, wasn't for me.

I am now trying the new drug "timing", big yes to that.

If something is not working for you, try it a little differently.

Remember sometimes the doctor is guessing too.

And for the few normal's who read this, enjoy life, it is way too short to worry about things you can not change. Concentrate on those around you. Make your life a little bit better.

Stay Safe

Stay vigilant

Wear a mask

Wash your hands

And remember "IT'S ONLY INCONVENIENT"

Let's talk about drugs Baby

WARNING
WARNING
And just in case you did not see it the first time
WARNING
DO NOT TRY THIS AT HOME
I AM NOT A DOCTOR.
This is just an blog about my observations


Parkinson's Disease is a funny thing. Not ha ha funny, more of a hmmm type of  funny.
There is no known cure. And doubtful there will be anything found in my life time.
So. You treat the symptoms, and try to make life as comfortable as possible.
With most diseases. The doctors know by experience  ( which, by the way is only having made the mistake already)  that if they prescribe X amount of Y drug. then the patient is either cured or leads a normal life.

With Parkinson' there are 2 main drugs used to help reduce, control, corral, hide, disguise your  Parkinson's symptoms.
Drug Number 1, Leader of the pack, voted MVP 20 years and running  Levodopa
Dopamine Replacement : replaces the dopamine your body no longer produces

Drug number 2 ,goes by various names, the bad boy of Parkinson's Mirapex
Dopamine Agonist : stimulates the nerve cells to accept more dopamine

Parkinson Canada has some great information 
See  https://www.parkinson.ca/about-parkinsons/treatments/

With Parkinson's there are so many different symptoms when dealing with PD. And every Parkie is different in the severity of those symptoms. What is good for patient A may not be good for patient B.
The drugs the doctor prescribed today may not work in a week or a month.
Or can work for years.
And that dosages are more of a suggestion, or sometimes a matter of guess work.

Most Parkie's take the doctor's prescribed medications. No questions. no thought.
If they work.. great . Which is 98% of the time.
But what if they don't, or if they only partially work. What then??

You also have to consider the side effects.
To much Carbodopa/ levodopa (C/L) and you move fine for a while. But then eventually you get a case of the wobbles. Parkie term for Dyskinesia. Which is also your body telling you STOP enough already.
To much agonist ( an agent that stimulates the brain cells to accept more dopamine ) ex. Meripex, and you can have ICD ( Impulse control disorder) behaviors. Or to Parkie's "I Can't Desist". 

Recently I was and still am part of a trial. Movapo
For those people who haven't read my  Pulitzer Prize winning 3 part expose of my experience. Read them, or wait for the movie called "The Needle And Me" staring George Clooney  as me.

Movapo can be a Parkie's dream, a shot that works in ten minutes, and lasts for 90 minutes. And you can take it up to 4 times a day.
But....
There is always is a but with Parkinson. No really... there is always a BUT, and it usually is big.
Too much, and combined with your regular meds can bring on all of the above.

In the perfect world. You would notice the symptoms and head to the doctor,
He would prescribe. X dosage of C/L. and maybe a small dose of Meripex. Some Physio to work the old tired muscles.
And you are set for the rest of your natural life. 
BUT

Like I said. I treat the drug plan given to me by the Dr. as a suggestion.
It is a collaboration between the patient and the doctor to fine tune the drugs to fit the Parkie.
The doctor has told me what my limit is. That I will not exceed.
You also have to take in to account, The Parkie's activity level.

The bottom line, the point I want to make is.

YOU ARE THE ONE WHO IS CONTROL OF THE AMOUNT' AND TYPE OF MEDICATIONS YOU TAKE.
Read up there are some very good articles written in terms for regular people.
I for example found I was more off than on, So I added 1/2 of a C/L pill (50mg)
I had some improvements. But not enough so I added another 1/2.
That worked.
If I had developed the wobbles . I would have gone back to the original dosage.

But I always tell the Dr what I have done and when.

The only person who knows how you truly feel is you . You can tell the doctor what is happening to your body and how you feel. But he only has the information other Parkie's have given him, and what he has learned.

Randy's Drug rules
Dosages are only suggestions. Very good suggestions, and should be followed whenever possible. 
It is okay to increase your dosage one time for Special occasions, But be prepared for the consequences.  
Tell the doctor everything. If you have experimented let him know.
He could use the experience as well.

Things I have learned about Parkinson Drugs in seven years.

Always take your drugs on time. Set an alarm on your phone, watch or care giver.
If you miss a dose. Take it right then. Adjust your timing every 4 hours after.  DO NOT WAIT UNTIL THE NEXT SCHEDULED TIME TO TAKE THEM. 

Levodopa has a 4 hour half life in the body. Regardless of how much you take.

If you drugs wear off in 3.5 hours, (which happens) it's okay to take your next dose then. Just remember to adjust your next dose. But your body will tell you.

If you need your drugs to work quickly , Take them with Coke, Pepsi, or orange pop.
Yes you can wash your drugs down with a beer

Being physically active will help the drugs work better, and longer..

Don't be afraid to increase your dosage a little bit , for special occasions, weddings, parties, important meetings.

A single Levodopa pill taken at bed time (wink, wink, nudge, nudge ,say no more) can  improve your hang time so to speak.
Oh and guy's take the ED pill. That's the least you can do for our partner

 Life is to short to live it at less than your best.

 My daily intake of mind altering drugs

This does not include the use when needed
Movapo for off times
Cialis for on times
Zopiclone for down times
Doculax for the go times


Remember 
It's only inconvenient