How Long have You had Parkinson's disease?

I get asked this question, a LOT and I really don't know how to answer it correctly. I was OFFICIALLY diagnosed at age 47, on August 30, 2007. But is THAT the correct answer?? 

The Judge at my Social Security Disability hearing decided my Parkinson's began a year earlier, on August 1, 2006, but was she correct?

I used to THINK my Parkinson's started in the summer of 1999, when I couldn't make my right index finger double click my computer mouse at work, but was it THEN?

Or did it start EARLIER? Like back in 1995 when my handwriting suddenly got smaller.

My Wonderful Husband says my right hand had a very slight tremor before we got married, and that was back in 1985. So, was it THEN?

Or does it date back to my childhood? I was acting out dreams (and scaring both my parents or the neighbors I would awaken by ringing their doorbell at 3 am) when I was about nine or ten.

Does it have to do with the big crack in my skull I got when I attempted to occupy the same intersection at the same time as a UPS truck at the ripe old age of six?

Does it date back to my birth? My Dad had Parkinson's. Is it a family thing?

The answer is: I DON'T KNOW.

NO ONE KNOWS. Not my Doctors, not the experts, no one.

But does it really MATTER?

Except for the purposes of determining the amount of my disability check, I'd say NO, it doesn't really matter.

BUT, how do I answer the question when I am asked?

I usually say since 1999, because that's when I became AWARE that there was a problem. Prior to that day when I went into work and couldn't double click my computer mouse, I was OBLIVIOUS. 
I didn't even NOTICE that my handwriting had changed. I only realized it a few months ago while researching a story for my book, Parkinson's Humor.
I didn't KNOW I had a tremor when we got married until hubby mentioned it to my Doctor a few years ago.

So, maybe the best answer is...


TOO LONG!

Programming a Parkie

Lip curling upwards

I went back to Tucson, Arizona (450+ miles round trip) for my first official DBS programming about ten days ago. Since my appointment wasn't until 2 pm, I took my morning dose of carbi/levodopa and ropinirole, but skipped the second dose, which was due at 11 am. By appointment time; a little rigidity and slowness had returned, but my face was the most affected. My upper lip was doing a weird curling upwards thing (almost like Elvis).

Programmer controller

Stephanie, the programmer, checked my blood pressure (it was fine) and then got out her programming box and did some "is everything working" tests. She asked me how I was doing, how I felt, what medications I was taking now, and what Parkinson's symptoms I was having. I told her my "goal" was to get off all oral medications completely. She said that was the wrong attitude to have and that my "goal" should be to feel as good as I can all day, even if it requires some oral medications. So, I got a new attitude!

My remote

My DBS unit comes with a remote control and all I could do, so far, was turn it on or off. Stephanie hooked up the antennae and showed me how to adjust the settings myself, within limitations she set. Since the right side of your brain controls the left side of your body and vice versa, the controller is designed to mimic your body, so when I look at it, the left number is for my left side and the right number is for the right side of my body. It is less confusing for us that way.

My remote with antennae

The antenna clips on to my shirt and must be positioned directly over the unit in my chest in order to work. Once it "connects" I can see my current settings, battery level and status. I can then turn each side up or down. She set limits, so I can't zap myself. When I walked in to her office, my left side was set at 1.0 and the right at 1.2. When she was done, my settings were at 1.2 and 1.4 and the rigidity and slowness were gone, but my face still felt strange, so I went ahead and took another carbi/levodopa and ropinirole. She said I might want to put the settings back to where she started if I got dyskinesia or other side effects and then gradually move them upwards over a few days. She said, "You know best how you feel."  

My current settings

As my brain continues to heal from the trauma of the surgery, adjustments will need to be made. Since my appointment, I have played with my settings and oral medications. I am now down to three oral doses a day and my settings are still at 1.2 and 1.4. It will be a slow process requiring several more trips to Tucson, but I am very happy with my results. I have almost no rigidity or slowness and only a slight tremor first thing in the morning. My upper lip still does the Elvis curl, but the oral medications relieve that. 

Even though my motor symptoms have almost disappeared and people (including my beloved Dr. Z) say, "You don't look like you have Parkinson's anymore," I still HAVE Parkinson's and still find my Energeezer Battery running out of juice. So, I have learned to pace myself and not overdue it. 

The bottom line; would I do it over again? The answer is a definite YES. Besides, you can't imagine the fun I am having. I tell friends about the DBS, how I am now "electrified" and then when they hug me, I say, "Bzzzt" and make them jump. Nice to know I haven't lost my sense of humor.

New electrified YumaBev

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Things Not Known about Parkinson's

This is a Letter to the Editor that I wrote, it was published in the Yuma Sun newspaper in October of 2012. You have my permission to submit it, or your own revised version, to your local newspaper. Let's share the facts of Parkinson's disease with our communities.

This is addressed to all the physicians in my community. I have Parkinson's disease. Here are some things you might not know about Parkinson's:

1. Almost 35 percent of Parkinson's patients never get a tremor — that's right, no tremor. The rest may have action tremor and not resting tremor. The tremor may be on just one side of the body; Parkinson's doesn't have to be on both sides.

2. No one is too young to have Parkinson's disease. I know people who were diagnosed in their teens. It is not in our imagination, we are not faking symptoms, we aren't drinking too much coffee or just anxious. There is definitely something wrong. Help us.

3. Stiffness and slowness of movement are common symptoms. Changes in gait and lack of arm swing when walking are telltale signs. 

4. Parkinson's medicines can cause melanoma, so refer all your patients to a dermatologist for a complete skin check.

5. If a patient presents with upper back, shoulder or neck pain that you can't find a clinical reason for, it could be an early sign of Parkinson's disease. Don't dismiss it.

6. Parkinson's disease can affect our heart, and the medicines we take can affect our blood pressure. Your Parkinson's patient might just need their Parkinson's medications adjusted, not another prescription.

7. Changes in the ability to smell may be an early sign of Parkinson's.

8. Sleep changes, acting out dreams, vivid nightmares are all early signs of Parkinson's.

9. Changes in handwriting, letters becoming smaller and cramped are another early sign.

10. Changes in voice, slurring words and speaking softer are all signs.

11. Changes in facial expression or a blank look are signs.

12. Stooped posture or loss of balance is common.

13. Cognitive changes can be a side effect of the Parkinson's medications, so don't just assume otherwise and add another Rx.

14. Adding another medication to the tons we take isn't always the answer — it could be one of the medications we are already taking that is causing the problem.

15. Refer your patients to a movement disorder specialist preferably or at least a neurologist who knows about Parkinson's. Don't try to treat them yourself; Parkinson's is too complicated. I know, I have it.

Beverly Ribaudo

But You Don't Shake

But you don't shake. I HATE those four words and every time I hear them, I want to scream! 

And I hear them often, from strangers, from cashiers, from salesmen, I have even heard it from Doctor's, Nurses and Pharmacists. They always come right after I say "I have Parkinson's Disease". 

My Wonderful Husband and I drove 200 miles to San Diego to attend a Parkinson's Seminar hosted by UCSD and the Parkinson's Association of San Diego. My built in GPS failed me, or I just couldn't remember what I saw on the map, I'm not sure which, but I took the wrong exit and got lost. I quickly realized my mistake and after several U-turns, found the signs and made it to the program, 20 minutes late. We signed in and found seats.

During the break, I met Karen & Sue, people I've met online through Twitter. I'm not sure which of us was more excited to meet the other, I guess it was a tie, but either way, I was glad to meet them in person.

I wandered around and introduced myself to some of the folks who were attending the seminar, told them about this blog and gave them refrigerator magnets with the Parkinson's Humor web address on it. I even told a funny story or two.

And then it happened, those four words "but you don't shake". I didn't scream, I didn't even get mad. I just said "You're right, I don't". I explained that tremors have always been the least of my problems and are controlled fairly well by medications. He asked "How long have you had PD?", I said 12 years. Wow, he said, how do you manage your symptoms so well? I explained about  Charting my symptoms and a great relationship with my Neurologist. A few others nearby, heard our conversation, and asked me about charting. I explained it, told them I had written a story about it and gave them magnets with the Parkinson's Humor web address and told them how to find the story on my blog. 

The seminar was very informative and afterwards I handed out a few more magnets and told a few people about my Parkinson's songs.  I got to talk to several of the Doctor's who spoke at the seminar. The best part? None of the Doctors said "but you don't shake" when I told them I have Parkinson's. That gives them an A+ in my book.

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Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon or your favorite online book seller. Thank you and have a Happy Parkie Day!

Charting Parkinson's Disease

Most of us with Parkinson's Disease make the same mistake when we go to see our Neurologist.  We have a conversation like this:
Doctor:  How are you doing?    Patient:  Fine   
Doctor: (to himself, then why are you here?)  

Sounds like the start of a humorous joke, doesn't it?  It does, but it's not funny.

I used to have conversations like this with my Neurologist until I realized that I have to know EXACTLY what is going on with my body so that I can report properly.  

About a week before my last appointment, I made a symptom chart and marked on it every hour or so as to what exactly was going on with me.  To make it simple, I made columns that depicted my various problems and chose a number between 1 and 10 to depict how I felt.  I also noted when I woke up, took meds, ate, napped, and other general feelings.   

This is what my blank chart looked like:

Clicking on this pic will make it larger

I made it using Works, which is the database software on my old PC, but you can use anything.  There might even be an app for your phone.  I would have written it on a piece of paper, but my writing is worse than any Doctor's.

After a few days, I noticed some unusual things:  

I would get a headache when my medicine started wearing OFF, then a stiff neck.  These both disappeared when I was ON. (if you don't know what ON & OFF mean, read Learning the Parkie Lingo)

I was wearing OFF after about 4 hours but taking doses 6 hours apart and it was taking about 90 minutes after a pill to feel ON again, so I was OFF about 7-8 hrs a day.  

When I was OFF, my nose would be all clogged up but I could breathe just fine when I was ON.  

I always felt better right after sleeping or eating a chocolate chip cookie.  I thought about just eating cookies, but then I'd get fat and my Wonderful Husband would leave me for a skinny Parkie.

I  might not have ever noticed these things had I not taken the time to chart exactly how I felt during the day.

I reported all of this (well, I left out the cookie part) to my Neurologist (who was very impressed) and we, yes we, decided to lower the strength of the medicine I was taking and increase the number of pills I take.  I went from taking three 150's a day (6 hrs apart) to taking five 100's a day (4 hrs apart) and I increased my ON time to almost the whole day and I am only taking 50mg more dopamine type medicine.

Consider charting yourself before your next Neurology visit and pay real close attention to how you feel after eating a chocolate chip cookie (maybe I have found a cure).


Clicking on the colored words will open a new window and take you to a different story or link.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller.  Thank you and have a Happy Parkie Day!

Senior citizens .......... I love them!

Parkinson's Disease has a sense of humor and likes to sneak up on you if you aren't paying attention.  Sure, I noticed the tremors, but the rigidity or slowness, not so much. The first time I noticed how slowly I moved was on a cruise ship filled with seniors and I was completely shocked. My Wonderful Husband was taking the stairs two at a time and then I noticed that almost everyone was walking faster than me, even the folks with walkers and canes! 

Click to enlarge

The real kicker came when I went to visit my Aunt who lived by herself in an upstairs apartment. I hadn't seen her in years and yet, when my Wonderful Husband and I got to the door, she asked me if I could make it up the stairs. Somehow she knew that those 13 stairs would give me trouble. So there I was, 46-years old and being helped up the steps by a tiny and almost blind 94-year old  woman. We joked about it every phone call after that. She lived to be 97 and could still take those stairs better than I could.

I look healthy, and except for the Parkinson's, I am healthy and I can sometimes fool younger folks but I can't fool the older ones. If there is one thing I've learned in life, it is never under-estimate senior citizens. They watch over me and know instantly whether I am doing good or bad.

I used to live in a RV Park filled with seniors, and if they noticed that I was having trouble, they would come rescue me in a golf cart. Of course, they would never say they were rescuing me, they would come up with a good excuse to give me a ride home.  

The ladies were more creative:  "Hey I need your advice, can I give you a ride while we talk" or "Can you show me where Ann lives, she's near you, right?"  

But the men were more fun. They would say things like: "My wife isn't looking, can I give a ride to the prettiest girl in the park" or "Let's stir up some gossip, will you ride with me". These were extremely funny to me, since I knew their wives had sent them to get me, but I played along. I no longer live there and I miss all my friends and the golf cart rides.

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Now I live in a new housing community and I walk every morning with George, a neighbor of mine who is 78-years young.  Some days we walk for 45 minutes, some days we only do 10, it all depends on how we feel.  We watch the sunrise, check out the new construction and see how people have decorated their homes and yards. Sometimes, we even get to see a cactus blooming. But the best part of all is sharing stories and laughing!  What a great way to start the day!  

Beautiful metal wall decoration

 

Arizona Loch Ness Monster

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

Shake, shake, shake - Parkinson's Disease Tremors

I remember seeing a group of men with musical instruments at a Bluegrass Festival about 20 years ago.  This one man's hands were shaking terribly, so badly, I was afraid he wouldn't be able to pick up his squeeze-box (a small accordion type instrument) that sat next to his chair.  I was right.  The fellow next to him picked it up and placed the strap around his neck.  The music started and this man carefully and with much difficulty placed his hands on it and began to play.  As soon as he grasped it, the shaking stopped and he played flawlessly.   It was incredible to watch and the group got a standing ovation when they were done, but as soon as he quit playing, the horrid shakes were back and the man next to him, helped him put the instrument away.  

Playing squeeze box

I knew the gentleman had Parkinson's Disease, I'd seen shaking hands before.  I went up to him and praised his playing.  He told me he was only 86 and had been playing since he was a child.  Neither of us mentioned the shaking hands.

This is the most common and easily recognized symptom of Parkinson's.  Tremors.  Almost all of us Parkies have them at some time or the other.  They come in two flavors, resting and action.  I've had both.  The gentleman above had the more common type, resting.
   
I started out with the action type, my right hand was fine, until I tried to use it, then it would shake uncontrollably, which made it very difficult to write, drink and eat.  I was forever picking up food off the floor and spilling my drink.  I started using my left hand and soon became so proficient that people thought I was a true lefty.  However, I never mastered writing left handed, so I gave up writing.  My Wonderful Husband took over the writing jobs, checks, grocery lists and even Christmas cards. 

My writing before:

You can click on picture to enlarge it, click the X to return

And after:

Quite a difference, right?

However, these tremors are not always a bad thing.  If I could time them to music, I bet I'd be a heck of a tambourine player and if James Bond stops by, I can make him a martini, shaken not stirred.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!

Okay, Seriously...What is Parkinson's Disease?

Parkinson's disease is caused by the death of little neurons in an area of your brain called the substantia nigra (black substance), which is somewhere above the spinal cord. These little gray cells, as Hercule Poirot would call them, make a chemical called dopamine.

Dopamine is the stuff that helps your brain send messages to movement related parts of your body. As these neurons die off, less dopamine is produced and the messages get garbled. These garbled messages cause a myriad of symptoms, ranging from twitching pinkie fingers to becoming stiff and rigid like a mummy. Symptoms can change from hour to hour and day to day, but progressively becoming worse as more neurons go to gray cell heaven.

Each and every Parky (nickname for people with Parkinson's) can have different symptoms. Most start with just symptoms on one side of their bodies. Mine was my right hand, bad for a right handed person. If I had been a lefty, I might not have even noticed for awhile. Most notice a shaking or tremor as the first sign, others never get tremors and just feel like their limbs got filled with concrete when they weren't looking, others have dexterity problems. My first symptom was the inability to double click my computer mouse with my right index finger, even though I had done it the day before with no problems. These discrepancies can make diagnosis very difficult.  

There is no test for Parkinson's. Rule out everything else and then make an educated guess.  In my case, it took eight years before someone guessed right.  Another YOPD (Young person with Parkinson's) I met online, got the right guess the day after she noticed something amiss. The average for us Youngsters seems to be a couple of years. The Doctors are looking for other things, not an "old persons" disease and sometimes tell us that it's all in our head. That part they are actually right about. It is all in our head, it's just not imagined.

Thank you for reading this story, I hope you enjoyed it. This is just one of a hundred stories in my book, Parkinson's Humor - Funny Stories about My Life with Parkinson's Disease. Please consider purchasing a copy from Amazon.com or your favorite online book seller. Thank you and have a Happy Parky Day!