My newest post about stem cell research is available now at http://thepdwarrior.com/blog  – hope to see you there!!

As a teenager, I used to look in the mirror and try to imagine what I would look like in my twenties, thirties and forties. Full grown, wizened, bearded, clean-shaven, skinny, fat; all of these things went through my mind, but I never once pictured myself as being old…

For the rest of the post please visit my new site. 

Concert of a lifetime is available on the new site

I finally have my new site up and running. It isn’t pretty (yet) but I invite everyone to come and check it out. I have imported all of the posts and comments from this blog. I will be importing all of the links and my blogroll within a day or 2.

For the next several weeks, any new posts I put up on the new site will be duplicated over here.

For now, welcome to the new home of the PD warrior! 

No, it isn’t a typo. I meant to say Brain Frog.

Many people with Parkinson’s Disease experience a phenomenon we like to call, for lack of a better term, “Brain Fog.” It’s a slowing down of the thought process as the brain searches for a particular word, phrase, or memory. Sometimes it lasts for a fleeting moment, often while trying to think of a word or phrase during conversation. Other times it lasts a little longer, such as trying to recall a specific event, or trying to remember what task you were doing when you were interrupted just moments before.

When it happens to me, I have a physical sensation, almost as if my brain is trying to swim through water. I know I will reach my destination and the thought will be complete at some point in time, I just wish my feeble mind could do the mental doggy paddle a little faster. It’s especially embarrassing when I’m in the middle of a conversation and I have to pause, searching for a common everyday word.

My mind also has another trick it likes to play, something that as far as I know is not related to PD – something I like to call the “Brain Frog.”

The “Brain Frog” is pretty much the direct inverse of ADD -attention deficit disorder- a condition where people (especially children) can’t sit still long enough to concentrate on a single subject or task. When “brain frog”kicks in, my mind goes into overdrive and begins to work on several things at once, hopping like a frog from one thing to another and back, fully capable of concentrating on more than one thing at a time, something I have always been able to do.

I have been an accomplished piano player for as long as I can remember. I began taking lessons at the age of five, and it used to absolutely drive my parents nuts because I would practice the piano and watch the television all at the same time, fully able to concentrate on both without missing a beat.

Even now, I will sit in front of the TV and work on a crossword puzzle at the same time; something which drives my wife crazy. She has no concept of being able to mentally do more than one thing at a time. That doesn’t mean she can’t multi task, she does that with the best of them. She can have three or four things going at the same time and be fully able to keep track of them. The difference is this, when she is working on more than one thing at a time, she has to divide things into separate tasks and completely stop what she is doing to move on to the next task, only concentrating on one thing at a time.

The funny thing is, I absolutely can not physically multi task. That is to say, if I am working on something that requires physical labor (other than piano playing) I am not capable of doing more than one thing at a time. Perhaps that is where the PD comes into play. For example, a simple task such as walking for any kind of distance, requires all of my concentration. If I am trying to carry on a conversation with someone beside me at the same time, I will either run into something, or trip and fall. Go figure…

The other unique thing about the “Brain Frog” is that it absolutely demands attention, or I will start to get very cranky. When my mind is in gear, and all the wheels are spinning, I better have something constructive for it to be doing; crossword puzzles are a good thing, writing is even better…the more “creative” I am being with my thoughts, the happier the Frog is, and the less it hops around. That is to say, it hops straight ahead instead leaping from one mental Lily Pad to the next.

Hobbies such as drawing, painting, or my recently acquired addiction – woodworking – really seem to make the frog happy. They require both the mind and body to work in conjunction. The amphibian is pleased because he must analyze everything mathematically, and esthetically, then concentrate on blocking the erratic behavior of PD hands long enough for them to create  whatever it is that the frog has envisioned.

I haven’t decided on the details yet, but fear I must apologize in advance to faithful readers who are used to finding the PD Warrior right here. More than likely, one day in the not so distant future, you will arrive on this site to find that I have packed my bags and moved.

That is not to say I am going to stop blogging, I don’t think I could stop if I wanted to -which I don’t – it’s just that the Day By Day Adventures of The PD Warrior needs to find a new home. I came to wordpress almost a year ago because of some of the really cool things it had to offer, but as I have grown, and learned, and learned and grown, I have found that I will be able to do oh-so-much-more if I relocate.

For now at least, I will continue to hang my hat here, while I prepare to set up housekeeping elsewhere. Once everything is ready in the new home, I’ll collect all my stuff and move out. But fear not, I will be sure to leave a forwarding address, after all, what good is a new home if none of your friends stop by to say hello?

My arms and my legs, just to name a few… PD’s personal contribution to my occasional bouts of sleep deprivation.

I can’t remember the last time that I slept for more than 6 hours at one time in the last 7 or 8 years, other than times when I was sick, and they don’t count. I have obstructive sleep apnea and insomnia.

At the request of my wife, I participated in a “sleep study” at my local hospital’s sleep lab, mostly due to my horrendous snoring. I avoided the study for a long time. I always knew I was a snorer, and attributed it to something I inherited from my father. I figured, if my mother, my sisters and I could get used to the window shaking racket he made, then my wife would be able to get used to what ever piddly little noise I was making.

Then came the apnea – the cessation of breathing – another annoying habit I seemed to have acquired somewhere along the way. As it turned out, when I wasn’t snoring, I wasn’t breathing; something which my wife found to be even more disconcerting than the snoring, causing her to lose even more sleep as she stayed awake listening to make sure I didn’t stop breathing altogether.

Eventually I broke down and went to the sleep lab. At the end of the test the technician came in to unhook me from all the wires, electrodes and probes. While he was doing that, he looked at me and said, “you really do snore, man…”

“I know, that’s why I’m here.”

He smiled and shook his head. “No, man…I mean, you really, really snore bad!”

No kidding, really? Why do you think I’m here? I scowled at him. “That’s what my wife tells me.”

“She was being nice. My wife would have smothered you with the pillow half way through the night. I have worked in this lab for 6 years, and never heard anyone snore like that.”

I frowned without saying anything.

Once he finished taking all of the wires off of me, he came in with a post test questionnaire – standard procedure to enable them to interpret my results correctly. Questions like “how long did it take you to fall asleep?” and “do you remember waking up? How many times did you wake up?” etc. etc.

The final question was “do you remember any time that it felt like you weren’t breathing, or not getting enough air”

“Once or twice…”

He shook his head. “More.”

“I don’t know,” I said, puzzled. “Seven or eight?”

“Try 738 – another record.”

“What!?”

He showed me the unofficial printout. I had stopped breathing 738 times. My oxygen level during these times dropped down to 72% (normal is 92% or above.) If it had dropped any lower, he would have had to cancel the testing and I would have been admitted to the hospital.

One week later I was fitted for a CPAP machine (continuous positive airway pressure) Now, when I finally do fall asleep, I sleep like a baby, and I actually feel refreshed when I wake up.

So, what does this have to do with Parkinson’s Disease?

Absolutely nothing. Or so I thought until I received my copy of the Young Parkinson’s Newsletter a couple of days ago, a publication that is produced by the American Parkinson’s Disease Association’s Young Parkinson’s division. The main article in this issue is entitled “Parkinson’s And The Night” by Johan Samanta, MD.

Apparently my sleeping issues, that I always attributed to a random luck-of-the-draw type thing, something that could only happen to me, are in reality a product of my good friend and constant companion PD.

The following is an excerpt from “Parkinson’s and the Night.”

“Ask a group of people with PD how many hours of sleep they get per night and you may be in for a surprise. One study found that persons with PD averaged just over 5 hours of sleep per night, and woke up twice as many times as adults of similar age without PD. Reasons for decreased sleep are varied but include sleep apnea, difficulty falling asleep (insomnia), frequent awakening (sleep fragmentation), nighttime urinary frequency, vivid dreams/nightmares often accompanied by physical action (REM behavioral disorder), nighttime confusion and even hallucinations and delusions.

Okay, so here is the list:

1. Sleep Apnea……….yep, got it
2. Difficulty falling asleep…….hmmm, let’s see – usual routine: go to sleep 2-3 hours after everyone else in the house because I am wide awake and my mind is spinning in multiple different directions – yep, got it.
3. frequent awakening…….does getting up 2-3 times a night to pee count? Yep, got it.
   
4. nighttime urinary frequency…..did I mention how many times I have to pee every night? Yep, got it.
5. vivid dreams/nightmares accompanied by physical action…..I don’t know if I can count this one; My dreams have always been very vivid, often freaky and sometimes downright scary
6. nighttime confusion………no worse than the daytime confusion
7. Hallucinations and delusions………only those of grandeur. Seriously though, I haven’t had any hallucinations or delusion, despite anything my children may have said about me.

I have four out of the 7 symptoms, with the possibility of #5 being added to the list. I have always had vivid dreams, and occasionally thrashed about in my sleep, but sometimes I have to wonder if the dreams aren’t becoming a little more bizarre. I have noticed a change in them over the last couple of years, but chalked it up to the mirapex I am taking for my PD. Vivid dreams is one of the most common side effects of the drug.

The article goes on to describe each of the symptoms listed above, along with suggestions as to how they can be treated. The article can be viewed for free by clicking the link provided above and following the instructions, or you can sign up to receive it in the mail – also for free- by clicking the the Young Parkinson’s link above and following the directions provided to be added to the mailing list.

Well, not really.

Fall has a certain quality about it that seems to pervade my very soul. The colors are splendid. The squirrels, and chipmunks busy themselves in a frenzy that is nothing less than comical, torn between the task of gathering stores for the winter and frolicking in the piles of fallen leaves. The neighborhood echoes with the sound teenage laughter and talk of first dates, home-coming dances and football games.

And then there is the air…

It is the gentle fall wind that I love the most; breezes that are cool, crisp and clean, yet somehow warm at the same time. My heart quickens, and I cannot help but smile each year as I feel the presence of fall brush my cheek for the first time, embracing me like a long lost friend.

From here my mind begins to anticipate the magic of the first snow fall, and my thoughts turn quickly to Christmas – the one time of year, during which I will forever remain a child.

This year in particular, will be special. My very first grandchild will be celebrating his very first Christmas. I can’t wait to give him my gift…a gift that I have been planning for months, even before he was born…a gift that I am building with my own two hands, constructed from the wood of an Ash tree that once grew on my mothers land.

Several months ago I was browsing through a wood-working magazine and came upon a set of plans for none other than a Grandchild’s Clock – a perfect replica of a Grandfather’s Clock in every way except that it only stands four feet tall.

I have modified part of the plans to suit my own tastes. I have started to gather the wood I will need, and have started to search for the actual clock mechanism with weights and pendulum.

The very thought of this project has made me absolutely giddy. It’s beginning to look a lot like Christmas…

I am officially calling today “Whiny Wednesday,” so brace yourself world, ’cause here I come!

Unlike other days, when I used a post on this site to grumble, I am not depressed, nor am I angry . Well, okay – maybe a little angry, but I am actually in a pretty good mood. What I am whiny about is pain.

Every inch of muscle and skin seems to hurt today. I knew it would be one of those days before I fell asleep last night. As I was lying in bed, staring at the ceiling, waiting for my body to stop it’s crazy antics.

Last night both of my legs and my left arm decided among themselves to hold a competition. They wanted to see which of them could produce the strongest, most painful muscular contraction, and hold it for the longest time – a symptom of PD called dystonia.

Fortunately for me this doesn’t happen very often. Unfortunately for me, when it does happen, I usually spend the following day in agony, because every fiber of my being, from the tips of my toes to the tip of my nose will hurt. My skin will feel tingly, and my muscles will ache from the abuse they endured the night before.

With October approaching, I suddenly find my thoughts drifting more and more towards my father, Joseph Ralph Jr.

As with any child, I have many stories I could tell about my father, some good, and some bad. Some of these stories, much to my father’s dismay, I have told numerous times; yet others have never been told before.

The story I am about to relate is the story of Cigar Day. It is a story I have only told twice in its entirety; once to my sisters, and once to my wife.

Cigar Day is December 17th, a day that is insignificant to most people, but one that I will never forget, for December 17, 2001 is the day my father passed away; a day that, although sad, is a day I will always remember fondly. Like people who lived through the bombing of Pearl Harbor, or the assassination of President Kennedy, I will never forget what I was doing when I received word of my father’s passing.

For me, my father’s death was the end of an era. It brought tremendous sadness, and at the same time, welcome relief. Watching the poor man suffer at the end of his life was almost unbearable.

My father had always been a strong man, both physically and morally. He told me once, there were only two things in life he could count on – his own muscles to get the job done, and his beliefs which would still hold strong when his muscles failed. I used to tease him whenever he told me that, saying “that’s just a fancy way of saying that your as stubborn a mule!” Deep down, however, I knew he was right, and I watched him demonstrate his convictions…his devotion…in the love he had for my mother.

Of course, he always ignored the kidding I gave him, but deep down I think he knew I was right about that too…

But alas, I digress…

To fully understand the significance of cigar day, you have to understand two things. First is the story of the cigar:

Growing up, one of the things I enjoyed most was looking through old photo albums my mother kept around the house. It always amazed me to see pictures of my parents when they were younger. For whatever reason I never could understand the concept that my mother and father were ever young, that they led a normal life. The idea of them having any type of social life, was outrageous to me, let alone the the thought of my father smoking. Yet here, in these images of the past, was proof that they indeed were human at one point in their life.

The photo that especially intrigued me, was one of my father with a cigarette drooping out of his mouth, taken of all days, on the day of my parents wedding.

Ever since I can remember, both my mother and father preached to me about the evils of smoking – “it’s bad for your health,” or “only bad people smoke, you don’t want to be one of them.”

Now, trust me when I say, if my parents said you didn’t want to do something, you didn’t want to do it! Not because they were right, but because the last thing anyone wanted to do was face the wrath of my father. He didn’t spank us often, but man when he did…(my bottom is still sore from a lie I told in 5th grade.)

Then I became a teenager. Like all teenagers, I went through my own version of the dark ages, complete with my very own bubonic plague – the dreaded Acne. My life was rife with typical teenage drama – high school, girlfriends (or the lack thereof) homework, curfews that no-one else had to obey, belonging to social cliques that I didn’t really want to be a part of, and not being accepted in the cliques that I foolishly admired, and worst of all…Saturday chores, imposed by dictatorial parents whose only goal in life was to prevent me from having any type of social life with my friends.

To defy my parents by skipping these chores would have been the equivalent of signing my own death warrant. At that time in my life I was almost as big as my father. I wasn’t afraid of any spanking that he could deal out and both my parents knew it. So, instead they came up with a different approach to punishment, one that was far more heinous in its cruelty, and effect – something that every mother has perfected – the guilt trip.

I had been a victim of my mothers guilt trips often enough to know that I didn’t want to blatantly risk another one by skipping my chores. So, instead I chose to defy them in a way that they would never know about. I would do their chores, which involved yard work in an area of the property that was not visible from the house, and while doing said chores, I would have a smoke. Not just any smoke, however. I would smoke a cigar – the vilest of all evils in my parents eyes

At first I did it out of defiance, and would smoke them quickly so as not to get caught. Then I discovered I actually liked them, and started to slow down so I could savor the taste for a longer period of time.

Big mistake.

I thought I was so smart with my passive resistance to Saturday chores. I had done it for weeks and hadn’t been caught. I was smarter than both my parents put together. I danced around the yard, my rake as my partner. I puffed on my stogie. I laughed at my parents ignorance of my antics. I suddenly found myself face to face with my father…

I didn’t know how long he’d been standing there watching me, and I didn’t dare ask. In situations like this I had learned it was wisest to let him make the first move. I just hoped he was going to do it quick because the cigar butt was still dangling from the corner of my mouth, and the embers were getting dangerously close to my lips.

“Is that a cigar you’re smoking?” He asked, pretending to be stupid, with his trademark grin on his face; the grin he kept in reserve for times when he caught me red handed.

You have got to be kidding me! He knows darn well it’s a cigar, but he expects an answer; a verbal admission of guilt. “Yes sir,” I reply, waiting for the tirade to begin.

“How long have you been smoking them?” He grins once more.

I am so busted. Now I have to chose wisely, and he knows it. The longer I have been smoking, the worse my punishment will be, so an answer with a short period of time would be in my favor. The problem is, I don’t know if this is the first time he has seen me do this. I have no choice but to tell the truth, and the ever widening grin on my father’s face tells me he knows this too. “A couple of months…” I wince at the sound of the truth, and wait for the onslaught.

He took a couple of steps toward me, sniffing the air. “They taste good, don’t they?”

I am trapped like a rat. He’ll know if I am lying to him. He always does. The only thing to do is stand up and take it like a man. “I like them…”

He sniffed the air a couple more times, a lion getting ready to pounce. I studied his gaze. When taking part in a serious conversation my father had a way of pausing right before he was about to say something, as if studying his own response to make sure he got it right. When he was angry, the muscles around his eyes would contract, drawing his eyelids into little slits a split second before he spoke. When he was in a good mood, the muscles around his eyes would relax, causing his eyelids to almost smile.

I braced myself for the inevitable as I watched him think. Then it happened…his eyelids smiled, taking me totally by surprise. “I used to be fond of ‘em myself,” he said shrugging his shoulders. “Take a puff for me while you’re out here,” then he turned around and walked away.

For weeks I waited for the other shoe to drop, expecting my mother to sneak one of her guilt trips in when I least expected it. But to this day, the other shoe has yet to hit the floor.

I still like my cigars. Always will. Though I don’t smoke them as often as I used to. In fact, I only smoke them once a year, on cigar day.

Now you’re probably wondering, if Cigar Day is December 17th, what does that have to do with October?

Well, this is where the story gets a little strange.

For the last several years of his life, my father was quite ill. He suffered with Parkinson’s Disease, as do I, on top of many other health problems ranging from COPD (Chronic Obstructive Pulmonary Disease) to CHF (Congestive Heart Failure) and CRF (Chronic Renal Failure)

I was going through a divorce at the time, and needed a place for my children and myself to live. Thankfully my parents had plenty of room. As it turned out, my mother needed help caring for my dad. With me being an RN, the timing couldn’t have been better. I can say that now, because hindsight is always 20/20. At the time I didn’t see it that way, but I was desperate, and beggars can’t be choosers. I was just thankful to have a roof over my head.

As my fathers health declined, he spent more and more time in the hospital. Always with a brave face that he kept on just for my mother. For any faults my parents may have had, I could never say they didn’t love each other. In fact, I have never in my life seen any two people as totally devoted to each other as they were.

My father was gravely ill toward the end. He was physically and spiritually ready to die, but my mother wouldn’t hear of it. Any time he even brought up the subject, she would get angry. She was not ready to let him go, and he knew it, so he kept his thoughts bottled up so as not to upset her.

After a while though, it was too much for him to take. He had to release his emotions somehow, and he did so privately, to me one October day, two months before he died.

My father was being treated for his heart failure, when I received a phone call from the hospital telling me he was out of control. He was being stubborn (not unusual) and striking out at the staff physically (extremely unusual.) They thought it was because he wanted to see my mother. He had a very rough time through the night, and was insisting that he talk to someone. It was early in the morning, and my mother hadn’t arrived yet. She came to see him every day, faithfully; arriving the very second visiting hours began, and she would not leave his side side until the very second they ended. They offered to call her, and allow her to arrive early, but he wouldn’t let them call anyone but me, and would I please come in and talk to him?

I left work immediately, and flew to the hospital, not knowing what to expect. When I arrived at the nurses’ station on his floor, they told me that he had calmed down immediately as soon as he heard I was on my way.

Why he wanted to confide in me, instead of my mother was a mystery. Puzzled, I entered his room. He was almost in tears when he saw me.

“I’m going to die soon,” he said.

Then I knew what he wanted. He needed to talk to someone about his feelings. He needed to talk about his own death, a very normal and natural part of the dying process; something I had seen a million times as a nurse.

The conversation we had was very deep, and very personal. Much of it is way too personal to divulge here, but it started with him telling me about a dream he had the night before.

He dreamed that his “brother” had come to see him on a motorcycle, and that he told him the “time was near,” and not to be afraid because he would be there and they could “ride off together.”

From a reality point of view, the dream made no sense what so ever. My father did not have a brother, and he had never ridden a motorcycle in his life.

Spiritually, however, it made perfect sense. The brother he was referring to was his cousin Bobby that had died earlier that year. Bobby was an avid motorcyclist, and even though they were only cousins, my father often thought of him as a brother because they were raised in the same house for years. Bobby always used to stop by the house on his bike, wanting to take my father for a ride – something my father always wanted to do, but wouldn’t because he knew my mother was terrified of motorcycles. (You should have seen the look on her face when I came home with my first bike – a story for another time)

My father then proceeded to tell me that he was not going to live to see Christmas that year, and that he had a number of things he wanted to see done. He gave me the list, and I wrote it down, promising to carry out each and every step for him.

A week later my father was dismissed from the hospital. He managed to stay well for several weeks while I worked away doing everything on his list. The last item he wanted done was to have Christmas Lights put up on the outside of the house, something that hadn’t been done in the last several years because the outside electrical boxes needed to be rewired.

Rewiring the boxes was a relatively easy task, but one that took several hours none the less. The hard part was the task my father was undertaking while I busied myself with the electrical work – keeping my mother and my children occupied so they wouldn’t discover what I was doing. He wanted it to be a surprise for them.

I don’t know what was more precious; the looks on their faces when I threw the switch, illuminating the house and every tree in the yard, or the look on my fathers face.

Two days later he was admitted to the hospital for the final time. His kidneys had shut down completely. They attempted to put him on dialysis, but were unable to do so because his heart began to shut down every time they tried. The only thing we could do now was wait.

The evening before my father passed away I couldn’t sleep. I was suddenly filled with energy at a time when I should have been exhausted. I tried to fight it for a while, by turning off the lights and covering up with a blanket in an effort to force myself to sleep, but it didn’t work. Eventually I gave in to the energy and did a lot of odd jobs around the house, cleaning things that hadn’t been cleaned in months, catching up on some bills and paperwork that I had been putting off etc. Finally, when I ran out things to do, I picked up a cigar and went outside – I never smoked in the house. (Besides the fact that I didn’t want the house to smell like cigars, I still wasn’t sure if my mother knew I smoked the things.) I stepped out side and stood in front of the house, alone with my thoughts and my stogie. It had snowed most of the day, but the night sky was clear, and the stars were shining brightly. By then it was 1:00am December 17, 2001. A cool wind blew by, and a sort of peace came over me as I looked at the heavens. I took one last puff before putting the cigar out and going back into the house. “This one’s for you dad…”

The phone call came less than five minutes later.

I have since cut back dramatically on the cigars out of love and respect for my wife, much in the same way that my father quit smoking out of love and respect for my mother. Now I only smoke one a year, on Cigar Day, in honor of the greatest man I ever knew.

Dad, you are sadly missed…