Parkinson's and Pennywhistles

By Way of Introduction

As I write this first post, I am still wondering where exactly this blog will go. I thought this was from  me to some unseen persons anywhere in the world but why would I presume that I had anything to offer them or that they would care about me and whatever I say?  So really its not from, but instead, for me with people looking over my shoulder if they so choose.

So where to start?  I offer you a collection of thoughts covering the last 13 years. I call it Diatribe. 

Di`a`tribe

Top of Form

1: archaic : a prolonged discourse
2: a bitter and abusive speech or writing
3: ironic or satirical criticism

 “Don't worry about the future ….. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.”
- Unknown

An idle Tuesday, 3:30pm . . .

On a sunny spring day in April that year I made my way to an appointment with my family physician. Over the previous fall and winter I had experienced a minor pain in my wrist accompanied by stiffness of my fingers after typing or using the mouse for extended periods on the computers at work.

After the standard checks on heart, breathing and blood pressure, he focused on my right wrist and elbow. He twisted and flexed the joints and kept saying, “relax your arm”. The conclusion: there was a bit of “excess tension” in my arm. I should go to see a neurologist for further tests.

A week later I was sitting in another doctor’s office patiently waiting my turn. My name was called and I was ushered in. After 10 minutes of touching my index finger to various parts of my face with eyes closed and touching my index finger to his finger while he kept moving it around, the examination was complete.

Now seated across an acre of desk from him I heard the verdict, or rather the diagnosis. Parkinson’s. I was given a prescription for amantadine and a single sheet folded pamphlet on Parkinson’s and told, “See you in six months”.

 The second opinion was the same.

I had just had my 37^th birthday. Now I was reading about a progressive, debilitating disease that would be with me the rest of my life. It doesn’t normally strike until your sixties or later the pamphlet said. The pamphlet said I should wear shoes with a flat solid sole and try to get up and outside if only for a little while each day. Right

The pamphlet showed a family rallying to support octogenarian grandparents. It bore as much relation to my life as . . . . it bore no relation to my life.

Try to get outside if only for a little while each day. Right 

I had two children under 10 years old. I had scouts and guides to get kids to. I had to help build Cub cars. I coached my son’s soccer team. I was a Customer Service Account Manager with a staff of 24 people across the country during an industry boom.

Try to get outside if only for a little while each day. Right. 

For the next month I was examined, poked, prodded, drained of blood vial by vial ( I think there were upwards of 30 vials sized tiny to alarmingly big). Then urine samples, some straight and then some encased in foil to avoid the light and to crown it all, a CAT scan “with enhancement”. All this was in an effort to determine if my problem was something other than Parkinson’s. I wasn’t sure which alternative to cheer for. 

By way of introduction

My name is Grant. I am a husband of 25 years and counting, father of 20 year I have an Engineering degree from the University of Waterloo and an MBA from  York University . I was a 20 year employee of a large corporation until it underwent several huge downsizings.

I am an entrepreneur by necessity. That means I’m unemployed. I am trying to grow a business which digitally restores pictures, and using pictures, old and new, I create memory movies for celebration, tribute or documenting family histories.

I am still looking for a full-time job.

I haven’t found anyone who will take a chance on me yet.

I am a person with Parkinsons.

 

What is it like?

I can’t relax. Even on a good day or good hour I can’t flop down on the couch and sprawl. My head won’t rest on the pillow; I have to will it so.

There are times I have to think about the steps I have to go through to accomplish even a simple task like driving a nail or flipping a pancake. Shoelaces can stymie me. Tying a Windsor or Four-in-Hand knot in my tie has to be done the night before. 

When in need of medication all the muscles in my body feel like they are humming like high tension electrical lines. When the meds take hold it is like an upwelling of relief from my core to my extremities. 

I am never entirely sure that the person behind the counter has understood what I just said until I’m given a happy meal which is WRONG; asked to repeat what I just said; which is fine, or wait until their jaw goes slack and they glaze over into that “waiting for further instructions” posture. I will haul out a fistful of change to pay for something but let the cashier pick out the required coins. 

Dyskinetic bouts sometimes scare people. More often they annoy people, like the people behind me in a movie theatre. They also make my back and neck muscles really sore. It gets worse when I’m nervous. 

I sometimes freeze. I lose my balance occasionally although I haven’t yet fallen. I sometimes shuffle instead of walk. When I can’t walk without shuffling, I get out my hiking staff and use its rhythmic swinging motion to provide a tempo which enables me to walk; or I can run. Running is easy. I’ve always hated running. 

Random thoughts… 

I am not considered disabled by the Ministries of such things, but it’s difficult to get through a job interview without eyebrows being raised, or glances between interviewers which say, “Hello, what have we got here?” I’m a little nervous at interviews. I was once asked if I had been drinking. I said no and tried to explain. My brain was saying, “Tell him you are on drugs and try to explain that.” The interview was too formal; not a time to try humour. But I have to work. Mortgage, College/University fees, weddings and who knows what.

I just turned 50 years old. Inside I feel 18 like any 50 year-old, I like to joke and have fun but Parkinson’s masks it and I appear stone faced, dour and often speak as though I have a mouthful of marbles. Expression takes effort. Even then, the effort might result in a grimace instead of a smile. A good belly laugh still works.

 I take up to 37 pills a day. That’s up from approximately NONE 13 years ago. Back then I had to crunch a single aspirin to get it down. Now 7 in one gulp is the norm.

 I have been diagnosed and treated for Parkinson’s for thirteen years.

 “How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these.”

  - George Washington Carver

 

This is me…

 I make hiking staffs as a hobby. Hand-carved, brass and steel tipped, with grips of rope or leather cord tied in intricate knotwork.

 I have learned Tai Chi.

 I go camping in bear country, swim in Georgian Bay, Stargaze.

I fly high performance, 2 or 4 line stunt kites.

I play the pennywhistle. My wife thinks the word PLAY is somewhat generous. I am going to learn to play the Irish flute anyway.

 I still do all I ever could, it’s just a matter of degree and timing. When I feel good I have to do something. Anything. If not, an opportunity to be “normal” has been wasted.

I have two beautiful children, a supportive family and a large circle of good friends.

I have an appreciation and newly discovered compassion for those in similar straits.

In the midst of those that don’t know about Parkinson’s, who point or avoid; I have found gems who care without knowing you, who act on your behalf without being asked, who treat you as a dear friend would; and help you continue safely on your way

Parkinson’s not withstanding and all else in its proper perspective I’m doing fine.

 

 

One of the Gems

Be silent as to services you have rendered, but speak of favours you have received.                              

Seneca (5 BC - 65 AD)

Several years ago, perhaps five or maybe seven . . . .let me start again.

During the days when my time was measured by the activities of my children; and their time was measured by the availability of the most recent video game, I happened into a video game store. The timing, to be precise was marked by the availability of a video game unit heralded as were they all at that time, as the best. It was called the PS/2. It was in demand. You got one if you were lucky. I was lucky. A local video game store had two left.

“You sure?”

“Yes. “

“PS/2? “

“Yes, I am sure.

“Can I put a hold on one for me?”

“Yes.”

“How long will you hold it for me?”

“How soon can you get here?”

“Gotcha, I’ll be right there.”

I arrived scant minutes later. As promised, a large sealed box containing what later was to be revealed as a rather diminutive piece of electronics, was waiting for me. I am told that the price of electronics is constantly going down. While the absolute price may be reducing, I am not entirely sure about the per pound price. I am also not sure if per pound pricing of electronics is a valid comparison as it is say for fine art that matches your couch color.

Anyhow, I found myself in a somewhat dark store with video screens lit up all over the place. Each had been planted with a teenager. Kind of like hydroponics. No soil but there they grew. The lady behind the counter who seemed to be in charge asked if I would like to buy any games to play on the unit. Games. For a game machine. It didn’t come with any games, or a second controller apparently. Who knew? Computers I know but these game systems were beyond me. So I had to pick a couple of games. Not a simple task.

It was right about then that I noticed my hand shaking ever so slightly. My legs were starting to feel a bit tense and my  words were not flowing. In my rush I had not taken my next dose on time and my last dose of meds was wearing off. This was the first time that this had happened in public. At that time the wearing off took about ten minutes. I had always carried a days worth of meds, so I had what I needed except for the water. I explained my predicament to the lady behind the counter. It took several attempts but I made my need clear and without a seconds hesitation she brought me a large glass of water. The pills were slowly taken. She asked how long it would take for me to return to normal and pointed out that I did not appear to be well enough to venture out into the parking lot Christmas crush. She produced a chair for me and from that point until I was better, almost 45 minutes, she and the teenage staff took turns between other customers and just sat and talked to me about the pros and cons of almost every game that ran on a PS/2.

This seems a small thing, this glass of water. However, at that time I was very uncertain of myself and very self conscious about what Parkinson’s made me look and sound like. The people in that store, during the Christmas rush gave me the gifts of time and compassion. They might not have thought in those terms but that is how I have remembered them.

No act of kindness, no matter how small, is ever wasted.

 Aesop, The Lion and the Mouse

 

 

I Heard a Bear Once

If you have read "By Way of Introduction", you will remember the allusions made to camping on Georgian Bay. This is where we go and where I leave PD for awhile. Its still there but like nitrous gas at  the dentist, you still feel the pain, you just don't care.

                         

We camp. We have done it for  12 years. Our family and dear friends, together. We are pulled to the landscape of the near north with its blue waters and exposed rock. Apparently, so are bears. Not attracted to the landscape itself. They are attracted to food. The natural foods like berries and squirrels. The food brought in for camping and cottaging. Not to mention the food that brought the food for camping and cottaging.

Cutting through all of the irrelevant facts about bears concerning their size, range, typical foods, hibernation and so forth brings us to this; bears are opportunistic food vacuums trolling back and forth in their chosen space. As long as there is food, they will stay. They have enough tough fur to stop a javelin. They come standard armed to the teeth with teeth, fangs, claws and sheer size. They can run faster than you and they can climb trees better than you. They are, in short, good all-rounders and the biggest thing in the woods.

Now I don’t hate bears. I don’t deny their right to exist. I merely am terrified at the thought of meeting a bear as are many rational and right-thinking people.

So naturally we camp at Killbear Park near Parry Sound, Ontario.

Where else? What’s in a name anyway?  In this case its name refers to the propensity to have bears lounging about the place.

“They” say never feed a bear. I say if the bear is looking from you to the Doritos and back again then feed the bear the Doritos. Back slowly away and add more food items to the first offering creating a buffer zone of comestibles between you and the bear. Try to exude a sense of empathy with the bear about say, his lack of credit cards. Volunteer yours. Offer to drive to town and get more food. With luck it will not notice your departure if you placed the food correctly and, being a bear; it will forget you once you are gone. Be sure to change camp sites that same day.

“They” say, “We haven’t had any direct reports of bears this year.” What they leave out is the rest of the sentence which goes,” that we are going to tell you about.”  They think you will feel anxious, ya think!!??.

“They” say the bear is more afraid of you than you are of it. HAHAHAHAhahahaha<snoorrt!>hehehehe<sniff*>. Bullshit.

You have heard the line that goes, “I don’t have to run faster than the bear, I just have to run faster than you.” Warning: look around. What do you see? Teenagers, people younger and fitter than you? Can you keep up? Really? Be honest! Did you train for this? If you answer no, it’s likely a bad premise. If you answered yes, its likely a lie because I mean really, who plans for this?

So, how do you prepare for a sojourn into bear country. First get an air horn. “They” say bears hate loud noises. Bears make loud noises. You must make a louder one. Make sure it is a marine air horn. This is important. When you blast your air horn, you will have a split second to run while the bear checks to see which of the 30,000 island cruise ship is leaving or returning to harbor.

Get a solid walking stick. In a pinch this can be used to fend off the bear. Don’t get those whippy little walking sticks that walkers use to pretend they are skiing on the road. These are only useful if you can snag the bear’s feet and trip him up but at barely three feet long, guess where that puts you. Don’t get a collapsible walking pole. Yes they are light weight, Yes they are made of Kevlar. But read the packaging. If the word collapsible appears anywhere, spurn it. If you need it explained, never mind; have a nice walk.

What you need is a six foot solid oak pole, equipped with a braided double grip at the wide end and a stainless steel pointed tip on the other. In an  stand down with a bear you will still lose, but this stick gives you the very real opportunity to redirect the bear’s attention to an alpine walker or to the person two cottages downtown extolling the benefits of Kevlar and portability.

If you encounter a bear you should make yourself look big as you can. Right. How? O yes, raise your arms, wave them and make lots of noise (where is the airhorn I told you to get?). Brandish your walking stick (of any ilk) high over your head. If there is a group of you, do it together. The bear that you are now threatening en mass, quickly gets an estimate of the number of meals he is looking at and has picked you out because you are the only one with a whippy little collapsible Kevlar walking stick. Hurl your credit cards at him and make good your escape while he’s looking for the gold and platinum cards.

Be camp savvy. Ask the teenagers at the office about bear reports. Even though they are trained, you are the adult. You can see through all subterfuge. Some reports can actually be comforting. Take the case of the lady camping in a fifth wheel trailer reporting a bear on her site at night. While not exact quotes, the essence of the exchange is captured. The park staffer asked a few questions like, “had you packed away your food the night before?”

CAMPER: “yes, uh except for the blueberries.”

STAFF: “Blueberries? “

CAMPER: “Yes, but just a small bowl.”

STAFF: “Small bowl, where? “

CAMPER: “On the picnic table.”

STAFF: “Bears like blueberries.”

CAMPER: “Oh There weren’t enough to feed a bear”

STAFF: Pause. Blink.

STAFF: “Yes Ma’am. Have a nice day.”

Now you know two things. Where you should not pitch your tent and where to go if you do want to see a bear.

The result of preparation? What I can say is that in 12 years I have never seen a bear. One look at my oak walking staff and the air horn hanging from my belt loop and the tour boat schedule in my pocket, and even the most intent bear is deterred.

I have never seen a bear.

I heard one once.

Anomalies, quirks and odd stuff

You may be asking yourself when is the pennywhistle thing going to happen? After all, its in the blog title. I'm wondering too, so hold that thought.

I have always understood that PD is a designer disease in that the specific manifestations of symptoms can and usually do differ from patient to patient. There are also some quirky things. At least case they seem quirky and I am writing this post to see if quirky is  common amongst PD patients or if its just m

Here the first one. My last dose of meds is usually in the range of 7 to 9 PM, My first dose in the morning is about 8 AM. How is it that I can function almost as normal for at least an hour after waking when I haven’t had medication for almost 12 hours? It seems a simple question, but over 13 years with PD I have heard no clear explanation.

 

How about this one; a line drawn on the floor will stop me dead in my tracks. As I approach the line, my steps get smaller and faster. In practical terms, we used to have two carpet runners down the hall. Each has two ends (duh!) and therefore as you travel down the hall you have to cross four lines crossing your path. It was actually hard work traversing the hall. We removed the carpet and I now travel freely.

 

Speaking is sometimes tough. My volume is low, and my articulation is impeded by what must be marbles. I think I sound fine but hearing the chorus of “What, Pardon, Sorry, I didn’t get that, what, What, WHAT?” tells me that there may be problems.  I lived in

Quebec

for my first 14 years, I have a little French left. Why is it then, at times where I can barely be understood in English, I can enunciate quite clearly in French?

 

Finally, walking is becoming an adventure. What works to even out my stride when meds are low and walking varies between an off-balance stagger to a tiny shuffle? Marching, skipping or any silly walk (a la Monty Python) works. Walking with a hiking staff to measure the pace, walking a checkerboard pattern like the paving stones of our patio and even a run or jog is possible. The strangest solution is merely to clasp my hands behind my back and walk normally

 

So, does any of this ring a bell or hold a sense of déjà vu for anyone? I would like to hear your experiences be they the same or different.

 

 

No Needles

Hi all. Sorry I'm late with is post but here we go.

I like to volunteer for studies where I can help and I have been a subject in a few. The most memorable one was at Brock University where I was fitted into a suit equipped with dots which defined appendages and joints. The result was an image on a monitor of a skeleton which did exactly what I did. To me it was high tech cartooning. To the researchers it was a very sensitive method of measuring responses to specific tasks. It took all day and it was a situation where I had to initialy go off meds and then repeat when the meds cut in. All in all it was a positive experience. I can in fact say wthout hesitation, that the experience has been good. All of the researchers and their assistants have treated me very well with a large measure of respect and compassion.

At that time my main criteria in taking part in a study was NO NEEDLES. Pretty straight forward. If there is a needle of any kind which is required to get intimate with me, don't even ask. In fact it is my first question to a potential researcher. Get past that and I am in.

I was asked to take part in another study last week. No needles.There was a requirement to go off meds starting the night before, that is, do not take the evening dose and do not take the morning dose. I figured that this was doable.  I said yes.

Shortly before that call I had had an appointment with my neurologist and we determined that I was due for a change of meds. Two simple changes. Change from a levodop/carbidopa to a controlled release version of the same thing, same dose. Also, change from 5 requip down to 4 requip.
The first day was very good. Smooth all day. No dips or spikes. The second day was smooth but there was a definite feeling that there was not enough of something. It got worse the further i went.

Now one thing I've learned is that you can always go back to what worked. Restabilize, and then try something again. This time i also found what it was like to be off meds. The last time I did that was over three years ago. It was uncomfortable then. I was almost incapacitated this time. I never would have believed I could be so helpless. I returned to my former drug regimen ASAP. I am now back in control and wondering whether to take part in the upcoming study knowing what I now know about how I am going to be when I go off meds.

The saying goes that to be forewarned is to be forearmed. I don't think the author of that quote was in the same circumstances. I would say that to be forewarned is to take a real hard look at what what the consequences will be and for how long they will last, and who they will affect. I can be sure that recovering to my "normal" state will take two days.  During that perod, people will be worrying and running around after me. Balance that against participation in a study. I don't know right now. I'll have to decide soon as my session is for Tuesday next week.

I'll keep you posted.

A Memory: Canoe Camping

I was sorting old photos last year, filtering out the duplicates, the shots of sky and the unintentional portraits of various thumbs. There is little value in thumb photos unless you can match it with a person. All you have is a thumb with no lineage or attributable anecdotes. Anyway, that's an aside. What caught my eye was a pictures of a bright yellow canoe atop a purple AMC Gremlin. What follows is the collection of memories that picture sparked. Now I’m not very good with names. Places,events and good one-liners I remember; so just let me note right now that some, all or no names have or have not been changed or left alone, and the story is a synthesis of isolated memories that seem to be related as I pondered them. Bill’s and Jane’s name are the only names I remember in this story for a certainty. I live five minutes from Bill. I married Jane. No excuse forgetting their names. I may or may not have changed them.

It was the summer before university. Bill and I got it into our heads that we would go canoe camping. Neither one of us had ever done anything like it. Nor can I fathom why the idea lodged itself there, but there was no shifting it and so we started to prepare.

 

There was no question as to the destination. We were headed for McCrae Lake; a small lake north of Honey Harbour which in those days was about two hours north of Barrie. I had been to Honey Harbour before on the recommendations of my friend, Jane’s family. In fact Jane and I had canoed along many of the channels that same summer including the one to McCrae Lake. But that is another story. The lake had high rock walls almost entirely encircling it and there were islands in the middle. It was pristine Canadian Shield .

 

We were teenagers and owned very little that was of practical use in the venture. Nor did we really want to spend any significant amount of money to get outfitted since we were saving for university which started that fall.

 

So we borrowed a couple of things.

 

We needed a cooler to keep food in and so borrowed a “light weight”, metal chest freezer; perfect for canoes. (I hear you but go along with me on this) We borrowed a small, easy to roll up canvas tent that checked in at 30 some odd pounds not including the set of steel poles and tent pegs. It had a matching canvas ground sheet that went with it. It only added a few more pounds which were worth it to keep dry.

Next, the canoe came under our scrutiny. It only took a quick check to determine that there was no budget for a week’s rental of a beautiful 16 foot  canoe. My girlfriend, Jane had a canoe and it  turned out to be no problem borrowing it. The canoe was a bit shorter than we had hoped, but at only 12 feet it would be easy to manage. Besides, it was well built out of fiberglass and was much more heavily built than the rental canoes.

 

Finally we needed a car, with a rudimentary roof rack. My parents had a second car that we could use. It was a Gremlin.  It could have been worse. At a time when the Man With the Golden Gun escaped James Bond in a flying AMC Matador, and the next evolution in cars from AMC was the Pacer, it could have been worse.

 

The Gremlin was purple with a white racing stripe. The canoe was yellow. The packed rig was not a thing of beauty. Then as now when conscientious citizens report such sights to the authorities, they find their drinking habits up for discussion.

We were packed so we gassed up the car and took off for Honey Harbor where the car would remain parked waiting for our return while we paddled our way to peace and quiet on an island in McCrae Lake.

 

Mariners have a term known as “freeboard”. It is the distance from the waterline to the upper deck level, measured at the lowest point where water can enter the boat. A canoe would be measured from the waterline to the gunwales about halfway down the length. Canoes typically ride high on the water and while their total height may be a foot, the freeboard will not be much less than that.

 

Except when you are carrying two sizeable teenagers, 30 pounds of tent (plus poles and ground sheet), two teenaged lads worth of food for a week in a metal chest freezer and your 12 foot canoe did not spare the use of fiberglass. No, the freeboard of out plucky boat was in the range of 2 inches. We were oblivious to how close we were to foundering. That’s another mariner’s term meaning to sink below the waves. A rogue ripple could have swamped us and sent all our stuff to the bottom. I don’t know how we made it without tipping but we arrived safely late that first afternoon.

 

We set up camp not far from the beach. We saw a couple of other campers on their sites and a few swimming off the far shore. That night the campfires lit up as did the stars and there was peace.

 

We noticed the evidence of raccoons next morning. Footprints had appeared by night where no footprints had ever been, covering the metal cooler. Fortunately we were spared destruction and disorder. We had counted on being visited and had taken measures.

 

We had not counted on the snakes or the people. There were a lot of people. People swimming. People basking. People driving at breakneck speed in their little power boats. People with hooks in the water trying to catch fish. No matter, we were here to relax. That’s exactly what we did.

 

Did I mention anything about snakes?

 

People occasionally stopped by to say hello. One person seemed quite knowledgeable about the local flora and fauna. He introduced us to a noteworthy local, the Massassauga Rattlesnake.  “The most distinct feature of the Massassauga rattle snake” says one source “is of course the rattle on its tail.”  I beg to differ. The most distinct feature of the Massassauga Rattler is the other end. That would be the end that has large fangs and poison. I call that pretty damn distinctive. It’s the only snake in Canada that can boast those features. “The Massassauga rattle snake is not out to get anyone” continues the same source “and will not strike you unless it is provoked”. Things that provoke, apart from poking them with sticks generally include any type of sudden movement. Leaping back in fear and running away are particularly provocative. “The Massassauga rattler is apparently very rare in Ontario" No one say “biodiversity” In this case, rare is a good thing to a camper.

 

We left after the fourth day. No not because of our new found knowledge about snakes but because we had eaten all the food. This cut our trip short by a day and since there was no grocery store within easy reach we agreed that we may as well go. We packed and paddled back to the waiting car with a generous 3 to 4 inch freeboard.

 

On the canoe trip back we had discussed the possibilities of improving our circumstances by finding a sanctuary in which to clean up and feel more human before scaring family on our arrival. Think of it as changing from life in the raw to life in the spa. There were several places to choose from on our route and decided to go to the first one we came to. It was in a small town called Flesherton. We parked in front of the main door and went in to se if it was suitable to our needs.

 

The concierge stared at us as if trying to ascertain what, if anything we were up to. As we drew near the reception desk he appeared to take a deep breath but stopped halfway with such suddenness that it must have been involuntary.

 

It was then I realized what was affecting him; it was us. Look at it from his point of view. Two teens dressed for the woods, obviously recently returned from the woods, sporting the soil of earth and tree on, and almost certainly in their clothes, whiskers, sneakers and under their fingernails, were checking out him and his resort. Two teens who had parked a purple and yellow something right in front of the main doors which was now blocking the way of the Buicks and BMWs were asking him how long the laundry service would take.

 

We cut short a potentially difficult conversation by producing a credit card each. The concierge spoke credit card and two people, two cards, two rooms, two meals and two laundry charges worked for him. After we cleaned up, we presented ourselves for dinner. From the concierge we received acknowledgement in the form of a curt nod which was an improvement in our station compared to the warding signs against evil.

 

We had had a week in the woods followed by a dollop of luxury. We were clean and fed. Gas was not $1.20 per liter. It was all good.

Funny the things you remember, isn't it?

 

No Needles-update

In the “No Needles” post I mentioned that I had been contacted and asked to participate in a study. I also said I had not decided due to the requirement of going off my meds for two of five doses. Well I have decided and called last Friday to withdraw. The reasons are several. First I had just stabilized after a recent medication change. Second, I have preparations to complete before going camping on Sunday. Yes!! I’m off to bear country again. You might think that a reason to stay and participate in the study extensively but trust me, the confluence of place and friends is not to be missed. They called me back today and asked if there was a more convenient date if I still wished to participate. Polite, understanding, not a hint of an issue with my choice.

 

They will call in September and we will set a new date.

Reflections on Camping for Parkinsonians

Being A Series Of Observations And Experiences From Which Some Wisdom May Be Found

First let me apologize for taking so long to get back into this blog and at the same time I'*m back and none the worse for wear. I would like to take this post to dwell on a few things to consider or avoid while camping with Parkinson's.

The first item had the biggest impact and it was the fact we camp in a tent. Tents have come a long way since they were simple squarish heavy canvas and steel pipe structures capable of incapacitating your back after one lift from the car to the ground. Today tents are lightweight, water proof and held up by tensioned lightweight shock corded composite poles. This enables large spaces to be easily enclosed. This is all good so what is the problem? Tensioned in this manner leads by design or accident to curved walls, domed ceilings and round zipper doors. There are no level straight or vertical lines anywhere and you usually have to hunch over to get in and stay hunched over to move around. I have Parkinsons! Balance is not always my best thing. Now I have to hunch, squat, and lean to get in or out.

Recommendation: Next year I would like to try renting a tent trailer. It has to be set up level. has full headroom a proper front door. In short, has all the horizontal and vertical points of reference.

Second, air mattresses can be extremely nasty things, unless they are inflated to rock hard and stay there. But no, that is not what air mattresses do. Under normal circumstances, changing positions for the Parkinsonian, like rolling onto your other side is not just a simple task, its an adventure. Now imagine that same task on a less than rock hard air mattress. As you push down with your hands, the part you want to roll over suddenly finds that the air has shifted to the middle and you are still in full contact and can not complete the roll over.

Recommendation: get one of those sleeping pads of blue, dense, solid core foam
that the scouts and guides use OR get a self inflating air mattress typically about an inch thick when inflated. Neither of these bulge. Also, neither will launch your partner on different trajectories as you land from significant heights while executing rollovers.               

Finally, and this is the hardest thing to do, make sure that your campsite is level or at least has a smooth slope. Gullies from rainfall, abrupt level changes and jutting roots and rocks can all contribute to a fall. The reason its the hardest item is because you tyically have no control unless you are familiar with the park.

By the way, signs were posted again this year that said "Active Bear in Campground". On the way out I asked if there had been many sightings of the bear. The reply was that two had been seen in our camping area and another two seen in the campground across the road. I still haven't seen a bear.

What about Pennywhistles?

Let me introduce you to the pennywhistle, or tin whistle, or just whistle, if you have not met. It is not a recorder such as they have in schools round these parts. It is a simple metal or wood tube less than a foot long (Key of D) with six finger holes and a mouthpiece you blow into. Blow while closing or opening the holes with the appropriate fingers and you get a nice tune coming out of the other end. This, for a starting price of about 5-10 dollars. If you have seen Riverdance or Titanic you have heard a pennywhistle. A fine website for all things pennywhistle is at www.chiffandfipple.com

 

I play the pennywhistle for my own enjoyment. That doesn’t mean that I don’t care what I sound like but rather that I try to play well for me. Three things prevent me from getting good enough to play with others. The first is, I do not practice regularly. My fault. The second is that I learn by ear. I can play the notes but it’s easier to listen to a piece and just try it. In fact there is a joke that goes,

“How do you slow down a tin whistler ?”

“Put sheet music in  front of him”

 

I didn’t say it was a good joke.

 

Reading music is the better way to do it. Because I do not do that, my repertoire has stayed the same in numbers but changes as I learn new songs. The older ones essentially fall off the back of the wagon.

 

The other thing to know is that even at their low prices, or perhaps because of them, you need more. Different colors, different keys, tapered or straight, different manufacturers; it’s a jungle out there! I have about 15 which means I only need another one if it is well and truly different like a really cool color or offset holes or a really cool color.

 

I have been encouraged to continue playing by my neurologist since any continuing exercise is nothing but good.

 

Occasionally they break. People have told me that the neck-hair raising squeaks that sometimes occur is due to the need for my meds. Something to do with shaky hands and/or breath control not being up to snuff. I humor them and dose up. But I think they are wrong because within half an hour I will find one that works. Sheesh!