Patience required during adjustment period

It''s been a while but we've finally settled on a permanent setting for my neurotransmitter's power levels.
Since we activated the device in April, I've been visiting the Movement Disorders Clinic at Foothills Hospital every two weeks or so as we explored different settings in search of the best one for my PD symptoms.  We tried power pulses of different strengths and time lengths. Now Pia, the clinic's surgical nurse, has my device on a setting that seems to work nicely on both my PD symptoms and my neck dystonia. I feel like I'm moving with more fluidity than ever and my neck spasms, though not completely eliminated, have calmed down significantly.
It's no problem for me now to look people in the eye when I talk to them, which is a big plus over my pre-surgery behaviour when my neck had a mind of its own.
I walked the 3.2 km course in the Step 'n Stride walk for Parkinson Alberta here in Calgary earlier this month ad raised about $1500.  Last year, I could never have walked so far.  When Vicki and I went on a Baltic cruise in August, I walked up to 4 km a day, exploring the art treasures of St. Petersburg, Russia and enchanting Scandinavian cities like Stockholm, Oslo, Copenhagen and Helsinki.  We also spent an amazing three days in Berlin. It was a marvelous holiday and all that much better because of my new-found mobility.
I didn't have the strength or balance required to ride my bike prior to my surgery. Now, I'm back on my trusty two-wheeler and I've cycled as much as 10 km at a time this summer. I sure missed being on the bike; it used to be a big part of my life.
My golf game is even improving!
I now realize now how much patience  was needed on my part to keep trying different settings for my neurotransmitter. I never dreamed it would take four to five months of tinkering to get it right.
But it's certainly well worth it.  People who haven't seen me for a while tell me how remarkable the change in my mobility and decreased PD symptoms are and I just smile.  I'm so fortunate.
Looking forward to watching more episodes of Michael J. Fox's new TV show.  I caught the premiere and thought it was very good.  Fox portrays the disease as it affects him with honesty and humour. I like how he downplays the "I'm a hero" label.  I don't think any of us with PD like that label.  Like the character Fox portrays, we just want to get on with life.
I wonder how realistic it is, though, that he has gone back to a demanding job after having been off work -- presumably on disability pension, like so many of us --  for so long.  I for one know I'm still not well enough to return to my job right now.  Early retirement was the right move for me.
While technology has pushed back the advance of my PD, it hasn't eliminated the inevitable progress of the disease.  It's just bought me more time, perhaps four to five years, maybe more.  Who knows?
One day at a time.


.



  

sorting out the societies

Let’s take a break from the ongoing story of my surgery to attempt to explain the recent split of Parkinson Alberta from the Parkinson Society of Canada.

The move, effective Jan. 31, 2013, was driven by Parkinson Alberta’s commitment to its clients and concern about how PSC had doubled the assessment fee it required on all revenue generated in Alberta. In 2010, that fee was $132,010, about 11 per cent of Alberta revenue.  Just three years later, PSC proposed a fee of about $294,000 or 22 per cent of projected provincial revenue.

John Petryshen, chief executive officer of Parkinson Alberta, says these financial demands “were causing excessive hardship to our organization and putting the quality and level of direct support and services we offer Albertans at risk.”

“Now, 100 per cent of the revenue generated in Alberta will stay in Alberta,” he says, to continue to provide, improve and expand direct support  and services to Albertans and contribute to research provincially, nationally and on a worldwide basis.

The biggest source of fund-raising is an annual walk in which donors sponsor participants.

PSC intends to continue to hold its Superwalk fund raising event in Calgary and Edmonton. However, Petryshen points out the funds raised will not stay in Alberta and support and serve Albertans affected by Parkinson’s Disease.

Parkinson Alberta has replaced the PSC walk event with an event called Step ‘n Stride, which will happen in communities across the province.  It is organized by the same Parkinson Alberta leaders and volunteers as in years past. Walks will be held Saturday, Sept. 7 in Calgary, Lethbridge, Lloydminster, Edmonton, Grande Prairie and Red Deer; and Sunday, Sept. 8 in Cochrane and Medicine Hat.

Parkinson Alberta has been as transparent as possible about the split.  Petryshen has visited support groups across Alberta to explain the move and answer questions; Parkinson Alberta members have received written material and phone calls designed to explain the reasons for the move.

“No other Parkinson organization in the country can say they provide the same level of direct service and programming that we do,” Petryshen says.

Online registration for the September walk is possible at www.parkinsonalberta.ca/events

Click on the Parkinson Step ‘n Stride logo.

Despite repeated requests to its communications and marketing department, the Parkinson Society of Canada was unable to provide comment on its perspective on the split.

That’s okay. It just makes my own decision to back Parkinson Alberta in all this confusion easier to understand. You’re free to make up your own mind.

 

search for correct power pulse continues

Since I last posted to this site, I've been involved in a continuing search for exactly the right settings for the neurostimulator tucked under the skin of my right shoulder.
This hunt has not resulted in a Hollywood-style happy ending  -- I haven't had a throw-the-crutches-away-I-can -walk moment.  But I have quietly put away my cane.My walking gait and balance are better.
 I'm learning that surgery results can vary from person to person and finding the correct setting isn't easy.
I've learned it takes the average patient who receives Deep Brain Stimulation (DBS) surgery about six return visits to the neurologist's office to get the correct setting; I 've had four such visits so far. 
Pia, the nurse at the Foothills Hospital's Movement Disorders Clinic who is in charge of my adjustments, can change programmning for the strength and length of time for each pulse of power from my battery-powered neurostimulator.  Then, I am allowed to adjust those settings every several days within a predetermined range with my patient controller, a small cell-phone sized device, to see which precise settings work best for all my PD symptoms.
All I do is hold my patient controller device over the neurostimulator  in my chest and make the necessary adjustments.
We've tried a numbert of different settings to tackle both my classic PD symptoms and my neck dystonia, which causes my head to bob up and down. It would seem that less power in each pulse is better; the higher power settings don't seem to do it for me, for whatever reason.
I also seem to fare better with settings designed to tackle PD symptoms rather than settings designed primarily to ease dystonia.
I can see where it would be easy to get discouraged as the search for the right combination of stimulation and drugs continues.  But as a friend of mine, Suzanne, who has had a DBS system for two years wisely observes, "it isn't designed to be a complete cure." 
I can understand that we all want the perfect solution; I know I've had to manage my own expectations and forgive myself for hoping all my symptoms would disappear.
But I am better, no doubt about that. That's enough cause for a realistic level of  rejoicing.
.
.

Programmed and ready to go!

I'm not going to tell you everything is perfect-- it's not.
On Monday, I had my DBS system programmed and turned on at the Foothills Hospital's Movement Disorders Clinic
The results of my recent Deep Brain Stimulation Surgery are a significant improvement over my previous state.  I've tossed my cane aside and I'm walking more normally than I have for years. I feel fluid and loose, more confident of my step. My arms swing freely now and I don't shuffle. I have more on and less off periods with my meds. Tremors have disappeared almost completely on my left side. I have less dyskinesia, those jerky movements brought on by meds. I feel stronger and I'm sleeping better.
  My head is still bobbing, but a lot less than it had in the past.  We still have some tinkering with the neurotransmitter settings and medications to address that concern at future follow-up sessions..
At the clinic, I felt like breaking into a run once I was properly programmed.
It was sort of like getting a new bike when I was a kid.  I just wanted to go on and on when I started to walk.
Vicki looked on, texting what was happening to family and friends.  She says she can't remember when she last saw me walk with a somewhat normal gait.  Perhaps it was sometime prior to my hip replacement and PD diagnosis shortly after in 2005. Limping is just normal to me.
I'm grateful for the surgery, which should slow the progression of my PD down and allow Vicki and me to travel more over the next few years. My golf game might even improve. When I consider how fortunate I am to have had access to the procedure and the expertise to deliver it safely here in Calgary, I consider myself truly blessed.
A large thank you to all of the staff at the Foothills Hospital -- surgeons, neurologists, nurses, technicians and clerks -- and everybody in the Movement Disorders Clinic who made this work for me.
I'll keep you updated through this next month of adjustments and changes.
Next week, it's back to Deep Water Exercise Class and longer walks with our dog, O'Grady. Spring can't come soon enough for me, especially this year.

just a little longer....

 I have to wait just a little longer to get my DBS turned on.
I thought it would happen this week, but the nurse who manages that task at the Movement Disorders Clinic can't do the necessary programming on the electrical current-generating device tucked in  my chest until Monday, April 15.  She needs a morning time slot when she can perform some tests on me without and with PD medication.
You didn't think it would be sooner, did you? I mean, this is me we're talking about here. Nothing is ever simple or swift...
Until then, cheers.

part 2 and a glimpse of what's to come

Once Monday, March 4's successful surgery was behind me, it was time for a briefer follow-up surgery on  the morning of Thursday, March 7.
I would be anaethetized for this one, when the surgeons installed my power pack snugly just under my collarbone on my right side and slipped the wires under my skin up my neck and connected with electrodes at the best sites in my brain selected to reduce my PD symptoms.
It took about 2 1/2 hours and all went well. I was soon back in my room -- I actually had a room after three nights without camped in various spots around the hospital.
I was very encouraged by the testing that was done on me between the first and second surgery by the surgical team's nurse.  Using a small hand-held power pack, she tried connecting to the various wires sticking out of my head.  She tried a variety of combinations and power levels; some of them were quite successful at stopping tremors and dyskinesia, including my neck, and smoothing out my walking. I felt great!
I was told that I wasn't going to get to have my own power pack turned on until after Easter, when swelling had abated and my brain was functioning normally. Another chapter in the hurry up and wait story of this medical condition.
I was released from hospital Friday, March 8. My recovery continues at home, where I can rest when I want and feed a healthy appetite. It's going to take a little while to feel 'normal' again. I've resumed taking my PD meds and my neck is telling me it's overdue for a botox injection, but that may be a thing of the past once I'm 'switched on.'
Many thanks to Vicki for her special care and to all of you who sent cards, flowers, fruit and e-mails. I'm truly humbled by your care and concern.
Next time, we'll talk about turning on my hardware. I can't wait.

the longest day ends in success

I made it through the surgery.  Thank God!
Here is sit in front of the computer, brain still somewhat scrambled after two significant surgeries and looking like Frankenstein Jr. with all the stitches in my 'noggin.
I think I scared the s--t out of more than several people at a close friend's funeral yesterday, as it was one of those days when my speech was not clear or loud.  I mumbled something they couldn't understand and said something about final hookup for my hardware coming after Easter, when my brain and all my incisions are healed and swelling is no more. They just smiled blankly back. Obviously, they didn't understand a word I had uttered.
On March 4, the first part of surgery required me to be at the Foothills Hospital at 5 am for preparation and a preliminary CAT scan so that surgeons could map my brain.  Actual surgery commenced about 7:30 am and didn't end until closing about 7:30 p.m.
 The OR was a cacaphony of noise and light as people came and went all day. And I was awake for the entire procedure, with local anaethestic in my scalp so that I could guide the surgery team towards the right targets deep inside my brain. I stll don't know how I did it, but I did. Talk about an endurance test.
Having my head bolted into a frame within another frame used to set surgical co-ordinates on my skull also helped keep me still.
The team drilled two major holes on the right side of my brain, and then inserted probes which used electrical sounds to find target sites.  As they neared the target sites, technicians called out how far they were from the site  -- for example 8.8 mms -- and said what the cells were like in that area.I was told to watch for unusual responses, such a a burst if light in my field of vision -- as they applied different amounts of current. I recall seeing bursts of light, as well as a strong sensation pulling down on my left shoulder, arm and leg.
Probes inserted into the right side of my brain produced some strong responses on my left side and a few strong flashes, as I recall.
The morning passed quickly. As the day progressed and we began work on my brain's left side, I grew more weary.I asked one of the surgeons, Keith, a friendly, unflappable Aussie, when he was going to be done. He estimated about 2 1/2 hours. Each minute that went by seemed like an eternity.
A very full day finally ended with freedom from the metal frame and a headache you wouldn't believe. I was wheeled into a corner in the Recovery Room, where I spent that night due to a lack of beds. I spent two more nights in an overflow area of the neurology ward and then finally got a bed in a semi-room for my last night. Thank you, Alberta government!
I'm going to sign off now and promise another posting next week on Part 2 of the surgery..
Until then, take care.

I've encountered some blogspot hosting problems which I'm now trying the iron out. In the meantime, here is my latest postng.

approaching final countdown

Many of you have probably wondered why I have blogged nary a word here since Christmas. Well, it's a long story. I'll do my best to explain.
You may recall that I had just received news of a firm date for my DBS surgery, Monday March 4. I was elated. However,the chillly rains of reality soon dampened my enthusiasm.
I returned to the Foothills Hospital here in Calgary on Jan.16 for some pre-operative testing and preparations. I was instructed to not take my Parkinson's meds that morning, so that base-line tests of physical and mental capacities could be performed on me.  The same tests were done several days later after I resumed my normal meds schedule.
Sans medications, I felt awful. My voice became unintelligible; my limbs froze weakly at  my sides and tremors gripped my entire body. All seemed to be going well in my first no-meds test session with a nurse who is part of the surgery team.  Then I did some basic memory testing.
I did not perform well on some simple recall questions. The nurse quickly picked up on this and flagged what could be a potential problem.
Neurologists do not want to do DBS surgery on candidates with failing memories, fearing the procedure could further aggravate essential memory functions.
My memory had been tested six months earlier in preliminary screening and was okay.
This discovery, however,  led to three more memory and mental functioning testing sessions -- one a brief session with another nurse and two more three-hour sessions with hospital psychologists -- before an assessment team decided just this past week that my memory was okay and the surgery could indeed proceed this coming Monday.
Stressed doesn't begin to describe how I felt through all of this trial. The surgery I had been looking forward to for at least a year could have been cancelled. Was my brain to betray me? Had Parkinson's begun to gnaw on my memory, too? Was I going to be denied a good chance to reduce my PD symptoms? I even began to question my resolve to undergo the surgery. The last thing I wanted to do was blog about my uncertain future.
A good friend reminded me to heed what I felt in my heart about the procedure more intently than what my intellect was telling me in my worried state. I did, and realized that I was willing to take all the risks this kind of surgery entails in return for a better quality of life. I faced my worst fears and examined them closely.
 Now, I envisioned nothing but success.
So here I sit, ready to deliver myself over to a team of surgical experts in about 40 hours for the first part of what will be a two-part surgery, scheduled for Monday and Thursday.
I now sport a practical, surgery-friendly brush cut instead of longer, thick locks of hair that still refuse to grey.
 Day 1 is a long day -- up to 12 hours in a conscious state so as to confirm to doctors that electrodes are placed in the correct locations on both sides of my brain. Day 2, the electrical stimulator that will deliver current to my brain will be installed in my chest and connected by wires under my skin to the electrodes.
Right now, I feel like an astronaut must feel strappped into a space capsule atop a huge rocket ready to thunder skyward. There's no turning back, and it's euphoric and terrorizing all at once.
Prayers and positive thoughts are the order of the day (thanks to all who have kindly shown support to Vicki and I).
 I'll tell you all about my experiences again soon.

the best gift of all

As Christmas gifts go, the one I received this year has to be the best.
My neurologist told me just before the holidays that my Deep Brain Stimulation surgical procedure, designed to provide some relief from my Parkinson’s disease symptoms, is scheduled for the first week of March. It’s really going to happen.
I can’t wait. I’m scared, curious and hopeful all at once.
As explained in a previous posting Sept. 18, the procedure, known as Sub thalamic Nucleus Deep Brain Stimulation (STN-DBS) will be done at Foothills Hospital in Calgary. Electrical impulses generated by a pacemaker-like device implanted in my trunk will be conveyed by wire to the sub thalamic nucleus (STN), a structure in the brain’s basal ganglia, where muscle movements are controlled.
This procedure has been helpful in alleviating symptoms for hundreds of patients like me whose medications are generally not as effective as they once were due to PD’s progressive nature.
In preparation for the surgery, I will be tested at the Foothills Hospital’s Movement Disorders Clinic in mid-January to see how my body behaves without my current dosages of Parkinson’s medications.
Then I will take my medications and be retested. These observations will establish a baseline and be used to adjust medication levels after surgery. Hopefully, I could need less then, although the primary target in my brain for electrical stimulation has been chosen to reduce powerful spasms in my neck called dystonia. A different target site is used in many patients and is generally more effective at cutting medication needs by as much as 50 per cent.
I will be sedated and awake for part of the surgery – the electrode implantation stage – as I need to assure the surgeon that the correct target in the brain has been reached. Local freezing is used on the scalp where holes are drilled in the skull. CT scan or MRI technology is used to plan and map the surgery as well.
Other pre-surgery preparation sessions are likely. I’ve already had a battery of psychological tests to provide a baseline of my mental functioning prior to surgery. These results will likely be compared to results post-surgery.
I’ve also been able to chat with several people in my support group organized by Parkinson Alberta Society who have had the surgery. That’s been extremely helpful in answering a long list of questions I’ve had about the procedure and what to expect.
As other questions pop into my mind, I can call on them for answers, which they are more than willing to provide.
As I write this, it’s New Year’s Eve. Here’s to a healthy and happy 2013 for all of us. I’ll let you all know when I have a precise date for my surgery so we can focus prayers and positive thoughts that day on a successful outcome.
Until next time, take care.

no need to be lonely

Walking with a friend in the dark is always better than walking alone in the light—Helen Keller
I’ve learned that while I have Parkinson’s disease, there’s no need to be lonely. I’m not the only person in this predicament.
Like most of us, I have friends who pre-date the onset of the disease in my life and have been nothing but supportive and tremendously helpful. But I’ve also made some special friends specifically because of my PD. Some of them have PD; other friendships have blossomed with people along the way.
It’s amazing how friendship can evolve rapidly when you share a challenge like this illness. It has a way of focusing your attention on what’s really important and how each day’s parade of people through our lives can bring joy, needed support and knowledge if we make the effort to reach out to others.
For me, support groups have provided a safe, caring place to heal from and cope with the storms that inevitably sweep through every life. They can help you feel, heal and move on.
An organization called Rebuilding, designed to help newly-divorced and separated individuals, was a Godsend when I faced the breakdown of my first marriage almost 25 years ago. Eventually, I became a facilitator of the 10-week course, made many friends both male and female and keep in touch with a smattering of them to this day. We had shared some of the most personal and hurtful details of our lives with each other, risking vulnerability but gaining new strength and understanding of relationships and ourselves in the process. And I met Vicki, the love of my life, through Rebuilding friends!
My own PD has made me more understanding of disabled people in general. My best male friend now is disabled – although you wouldn’t know it given the exemplary zest and energy he lives his life with daily.
I’ve also come to greatly appreciate the role support groups for people with PD and their primary caregivers have started to play in my life, specifically those organized by Parkinson Alberta Society. There are eight groups meeting monthly in Calgary area alone and about 20 more groups across the province by my count. Skilled and hardworking people like Client Services personnel Tanya Good and Harle Burnett in the Calgary region, ensure these meetings are effective and helpful.
PAS support groups provide a place to discuss our challenges, questions and fears in a confidential setting. It’s amazing how often we can provide each other with a helpful perspective, solutions or just a sympathetic ear. We learn how alike and yet how different the paths we are walking can be.
Vicki and I recently moved from a group with many older participants to a group of Young Onset patients closer to our age. It turns out that while the first group was very helpful and useful, we have more in common with the new group. I can, for example, talk with people who have had the Deep Brain Stimulation surgical procedure I’m eagerly awaiting. We have children who are the same age or some of us are trying to work full or part-time despite PD.
We’ve made new friends we’ll keep, I’m sure. Somehow, I also think the rewards will be more than worth the risks.
If you want to learn more about PD Support Groups here in Alberta, please contact the PAS office closest to you, email your request to info@parkinsonalberta.ca or visit www.parkinsonalberta.ca

holidays provide needed break

Everybody needs a vacation from time to time, and people with Parkinson's and their primary caregivers are no exception.

With some careful planning, these interludes can provide a restful respite from the daily drudgery of coping with PD, especially when Canada's wintery weather limits our outdoor mobility and dulls our mood.

And given †he progressive nature of PD, most coping with this ailment find it's wiser to travel sooner than later. We just aren't sure how mobile we may be in five or ten years.

Many of us have drawn up a 'bucket list' of destinations we would like to visit.
They were likely on our list of retirement dreams. Those plans now have a sense of urgency given PD's unrelenting march, be it slow or quick.

Since I was diagnosed with PD seven years ago, travel has been a key component of the plans my wife Vicki and I make for the future. Our five-year horizon has many trips, both long and short.

What we found very quickly is that there are types of vacations that are much more suited to people with physical challenges. For example:

-- Cruises are ideal. The idea of packing and unpacking once is perfect, and the world comes to your door, rather than vice-versa. Cruise lines are well-prepared to meet the needs of the disabled. You can be flexible in your planning; if you're energetic, you can sample today's port of call. If you're tired, you can curl up in a deck chair or your cabin with a good book.

--Destination travel to resorts also works well. Like cruising, you unpack and pack once. Usually food, recreational and activities are onsite; further excursions are optional and usually can accommodate the disabled.

--Direct flights avoid troublesome and challenging airport transfers, especially those featuring long distances between gates.

--Long bus tours ( i.e, ,Europe in 14 days) and arduous hiking or cycling trips sh ould be avoided by all but the most fit.

--River cruising -- one of the more recently popular modes of seeing European cities and sites -- can include a lot of walking. Make sure you know what' s involved before you go.

--Make sure you have more than enough meds for your trrip. Finding what you need in a foreign land may be next to impossible.

--Long trips by car can be done, but at a more leisurely pace with frequent rest and stretching stops.

There's no reason to curtail the plans you made to enjoy your life prior to PD. It just requires some different planning and attention to details like ensuring your hotel room is accessible and no't at the end of a three-storey staircase.


How do I know all this? Well, I'm writing this from the deck of my hotel room overlooking the Gulf of Mexico in Cancun. A cooling breeze wafts off the ocean beach below. I'm doing research for this piece. Did I hear it's snowing and -9 C. in Calgary right now? Adios amigo!

all the world's a stage

At first blush, you wouldn’t think that people who have Parkinson’s disease and actors in an improv comedy show have a lot in common.
Actually, they do. And the truth of that statement was driven home to me this week, when members of a support group organized by the Parkinson’s Albert a Society that I belong to attended a zany, funny improv performance at Calgary’s Loose Moose Theatre Company.
Improv comedy, as many of you no doubt know, is unscripted and spontaneous. In this case, the actors started out with lines of unrelated dialogue that audience members had scribbled on small sheets of paper before the performance. These lines were then scattered across the stage floor. The first one an actor picked up at random became the title of the play: ‘You Wouldn’t Understand It, You Weren’t in the War.’
Every so often, each actor had to in turn pick up one of the random lines and immediately use it in their performance, making for some hilarious, jarring plot turns in what turned out to be a tale about rescuing a financially troubled farm tractor company, an executive who lost his legs in the war, his loyal female administrative assistant and her ex-lover…well you had to be there to understand it all.
Afterwards, I thought about the similarities on the stage and in my life.
• Improv actors must do their best to shine with the lines they get. Likewise, people with Parkinson’s performing on the stage of life must find a way to cope with being dealt the unexpected ‘line’ of a PD diagnosis
• Both actors and PD patients must ‘go with the flow.’ Like an improv plot, sudden changes in your life come with Parkinson’s. Get used to it
• Nobody walks alone. Good improv actors need to help each other to make the play work; PD patients need their caregivers and support networks to make their lives work. Often we must learn to ask for help
• It really helps to have a sense of humour and the ability to live in the moment
• Crises can present opportunities. Improv actors can flounder and then just a moment later, confidentially launch the story in a new direction. Ditto for our lives with this disease
• There are no do-overs on the stage or in life. You can complain endlessly or resolve to make the best of it
• You may be surprised with what the actors fashion from the little they have to work with in the end. As someone with PD, I’m often amazed at what positive changes and experiences a rocky and steeper path has brought into my life
As William Shakespeare wrote in The Merchant of Venice: “All the world’s a stage, and all the men and women merely players.”
Me, I’m ready for some more improv. You know, laughter is therapeutic.

surgery could help control symptoms

I’m going to have brain surgery designed to help control my Parkinson’s disease symptoms.
It’s news that I’ve long hoped would come true and it leaves me feeling both frightened and fascinated. I’m frightened because, well, it’s brain surgery. And fascinated because it actually can be done successfully on people like me.
I truly will have some holes in my head, as some people may have suggested at times. The surgery -- Deep Brain Stimulation to a site known as the Globus Pallidus -- will be done at Foothills Hospital in Calgary, hopefully sometime early next year. No date set yet.
Electrical impulses generated by a pacemaker-like device implanted in my trunk will be conveyed by wire to the location deep in my brain, where muscle movements are controlled.
This procedure has been helpful in alleviating symptoms for hundreds of patients like me whose condition has grown worse due to PD’s progressive nature.
We may be experiencing abnormal involuntary movements, called dyskinesia, a side effect of the medication. Sudden and unpredictable periods of immobility can alternate with periods of too much movement. I know as I’ve experienced dyskinesia and immobility, and both are frustrating. The surgery may help.
Prime target of this surgery, though, will be to ease the dystonia in my neck -- powerful spasms that constantly push my head up and to the right. Currently, I receive Botox injections every three months to help calm those renegade muscles in my neck. I’ve gone from a 17-inch neck size in my dress shirts to a 19 ½ because my constant movement when I’m awake has built more muscle.
Any other positive results of the surgery – fewer tremors or improved walking – would be a welcome bonus. It's unlikely my medication needs will decrease. I’ll end up with a hand-held controller to turn the stimulator on and off and change its settings slightly.
I will be one step closer to becoming the Bionic Man, what with my heart pacemaker, metal hip joint replacement and new eye lenses inserted when I had cataracts removed two years ago.
Yes, the surgery does have risks, such as stroke or bleeding in the brain. Personality and mood changes may also occur. But the statistical likelihood of those risks is tolerable in comparison to the potential benefits, which I’ve discussed in detail with my neurologist, surgeon and family.
In Alberta, costs of the surgical procedure and any support services are covered by provincial health care. I consider myself fortunate to live in Calgary, where the medical staff with the expertise to do the procedure is experienced and accessible.
The multi-stage operation, pioneered in France in 1993, showed decreased severity of symptoms in subjects and reduction in dosages of levodopa, prime drug used to control PD. Since then, other medical centres around the world have documented similar results.
I will be awake for the first day of the two-part surgery – the implantation stage – as I need to assure the surgeon that the correct target in the brain has been reached. CT scan or MRI technology is used to plan and map the surgery as well.
Several days later in a second surgery, the electrodes will be tucked under my skin and the battery-driven stimulator installed. I'll be anaesthetized for this part.
I’ve already been through some pre-screening for the procedure, such as a battery of psychological tests to provide a baseline of my mental functioning prior to surgery. These results will likely be compared to results post-surgery.
It’s all very exciting and amazing, and I will keep you up to date on this blog as it all unfolds. I’ll need all the positive energy and thoughts that I can muster for the big event. For more information on this surgical procedure, visit http://www.medicinenet.com/deep_brain_stimulation/article.htm

telling others can be tough

One of the most difficult things for a person with Parkinson's Disease is letting loved ones, friends and co-workers know about their diagnosis.

I remember that late summer day in 2005 when a neurologist performed some tests on me and watched me struggle to write my name. I had been to see him a year earlier as I tried to cope with tremors in my left hand and foot, a problem that had dogged me for about three years. My General Practitioner at the time called it "a familial tremor."  At that time, the neurologist wasn't certain what was causing my troubles.

But just 12 months later, he didn't hesitate. "Sure does look like Parkinson's to me now," said the neurologist. "I'm going to refer you to the Motion Disorders Clinic at the Foothills Hospital."

It was like somebody had pulled a dark curtain over what I had envisioned as my future -- about another decade of enjoyable,  rewarding work, followed by a happy retirement with my wife, crammed with travel, golf, friends and other activities.

I remember thinking how damned unfair it was. I had just had a hip replaced earlier that year due to osteoarthritis, and the year prior, had a benign growth removed from a parathyroid gland.  I was taking medication for high blood pressure. Was my body going to betray me completely and begin an irreversible process of decline in my 50s? I was too young for this crap.

I phoned my wife Vicki and told her the news. She came home soon after, reassuring me we would get through this challenge like every other one we had faced.  I remember crying, but most of all I recall being just numb with shock. Even though I had suspected PD was behind my symptoms for several years, confirmation was like a punch in the gut.

As days passed, I began to ponder who and how to tell others of my fate.

It's hard enough coming to personal terms with the life-altering affliction, let alone worrying about what and when to tell others. Experienced medical authorities say that those closest to you, like spouses and children, need to know first. And then when the time is right and you're ready, the wider world should get the news.

Above all, it's most important to keep your own needs at the top of this hierarchy.  You are not responsible for helping other adults who react negatively or angrily to the news. It's not your fault and it's up to them to get help. You can guide them to sources of information. Children deserve special consideration, however, and it's worthwhile to seek professional advice on this point.

I let my two boys know the next time I saw them, assuring them that I would try to determine if my condition was hereditary. Turns out it's not in my case.

At work, my supervisor agreed to my desire to inform my co-workers in individual conversations one-on-one. I encouraged questions, explained how PD could affect my work and received lots of encouragement and support. I think it was a much more effective course of action than letting people know in a group setting.

I let other relatives know as it became practical to do so. 

What about the rest of the world? I explain I have PD if someone notices my tremors, my obvious bobbing and weaving head and the challenges using my hands. This usually is met with gracious gestures and help when I need it.

People have surprised me with the amount of concern and support they have provided. There's more good out there than indifference.

Recently, I was wrestling with my unruly suitcases at the airport after a flight back to Calgary from Ontario, where I visited family and friends.  From seemingly out of nowhere, a smiling, thoughtful gentleman provided me with a luggage cart  and helped me put the bags on it.

He smiled as I thanked him more than once and explained my disability. He seemed just happy to help. And I didn't feel as alone in my fight with this affliction as I might, because he had helped me and I had made an effort to communicate why I needed and appreciated his gesture.

 

reactions can be kind or curt

If you have Parkinson's disease, you find you can bring the best and the worst out in people. All it takes is a walk down a city street.

 Most people are polite and kind when confronted with a writhing, quivering person teetering to keep balance on the sidewalk ahead. Doors are opened for you. People slow down to your pace. Some even make the effort to smile.

 Others, mostly kids but some adults, stare.  Some brush by you in a hurry, just about knocking you off your feet. Then there are those store clerks and customers in line behind you who sigh loudly while you, mumbling apologies, struggle with unco-operative digits to pull cash from your wallet at the check-out.

Walk a mile in my shoes, buddy, and you may learn something, I think, as I complete my business and wobble out the door. Thanks for the sensitive, caring response to my disabilities. You know, I spend most of my waking hours plotting these delays to your all-important VIP life. Excuse me!

Some people are overcome with pity for your plight and while they mean well, they make you feel uncomfortable. Sort of like that aunt who used to hug you too much when you were a kid.

I always try to answer questions people have about PD with honesty. Yes, sometimes now I need my wife to cut my food up when we`re eating. My grip is weak due to peripheral neuropathy, damage to the nerves in my hands. It's a condition that may be the result of my constant efforts to still my shaking head by leaning forward on my elbows. The condition can also be a side effect of the drugs taken to cope with  PD. Next question.

The people I like the most are those who treat you with the same respect and dignity as anyone else. They make you feel comfortable and at ease. They look beyond the damaged shell of your body and connect with the real you. They make allowances for your condition, perhaps quietly ensuring your meeting place is easily accessible, or offering to carry something for you if you're struggling.  

Humor is welcome, too. I was telling one of my doctors how people confronted with my head bobbing and weaving often unconsciously mimic my behaviour. "Boy, you could really mess with some people, think about it," he said.

All I want is to be treated as normally as possible, without a big fuss and yet some consideration of my limitations.

That`s why education about PD is so important. Knowledge leads to understanding. And the more allies we have, the better off we are.

And that's why I admire the efforts of people active in the provincial and national associations  who assist people with PD and raise funds, and those individuals who have drawn attention and research dollars to our cause. 

Let me know what you think.

introduction

Each and every morning of my life for the past seven years, I've participated in a pharmaceutical ritual, a daily rite of passage that prepares me to face another day with Parkinson's disease.

With trembling hands and digits dulled by nerve damage that sometimes accompanies the disease, I fumble to transfer a dozen different types of pills from their containers into the compartments of a plastic sleeve containing the four doses of drugs that I need each day.

I know each drug tablet by its distinctive shape and feel; I could, and have, doled them out with my eyes closed or in the dark. About half of the pills I take help dull the effects of Parkinson's. The remainder deal with other ailments I have accumulated in 60 years of life, such as an irregular heartbeat, high blood pressure and osteoarthritis that led to a hip replacement.

Standing over the kitchen sink, I recheck the handful of pills that is my first dose. I often feel like a diver poised on the edge of a 30-metre high tower, steeling myself for a plunge not into water but another day of wrestling with my increasingly unco-operative body. Most days, the drugs are my deliverance. Some days, I curse their side-effects.

It's hard to believe that just a decade ago, I could cycle long distances and play old-timers hockey. Now, I am what several of my doctors describe as "a mess." It's odd, but that description doesn't bother me. Instead, it has always prompted laughter.

I'm not sure how this all came to happen. I used to be reasonably fit and cycled to work in the summer. I don't drink a lot or smoke. I don't abuse drugs. Doctors have ruled out genetics. I don't recall immersing myself in a pool of PCB-laced waters or a field freshly sprayed with pesticide at some point in my life. Okay, I did ingest a gulp or two of bleach I found in a kitchen cupboard when I was 2 1/2 years old. My alert Mother quickly got me to a hospital where my stomach was pumped. I haven't touched a drop since.

The thing is, I really don't feel as bad as it sounds. Yes, I've been angry and depressed and turned away for a time from a Creator who I blamed for my pain and all the senseless cruelty of our world. I will always be frustrated by the growing limitations this disease imposes.

As time goes by, I've stopped asking why this has all happened to me. It just is, and I accept that as best I can, keeping a positive outlook. I've learned that being a self-pitying victim holds no rewards. My task in the theatre of life is to play the role I've been given as best I can. This deal doesn't come with do-overs.

I can still write and reason.  I can still walk my dog, cane in hand to keep my balance. I can watch my grand daughter figure skating.  I even occasionally golf, after a fashion, with understanding family and friends. Yes, I do miss skating and skiing. But now that I'm fully retired, my wife and I plan to spend winters somewhere sunny and warm.

What my Parkinson's and other health issues have done for me is focus my attention on what is really important to me -- my relationship with God and nurturing the spark of Higher Power we all possess within; time with family and friends; and living in the moment, appreciating the stunning beauty and intricacy of nature and all those spectacular sunsets and sunrises we take for granted.

I'm starting to understand I'm where I am for a reason. Right now, I've been moved to use the skills I have accumulated in a lifetime as a writer, editor and communicator to link those who have Parkinson's together in mutual support and greater understanding of the disease. I also feel I should be helping our caregivers and the rest of the world comprehend the challenges each person with Parkinson's faces daily.

I would like this blog to be about helping you cope with and understand this disease, whatever your perspective. Think of me as a radio phone-in program host who enables all those who want to participate in the discussion to do so.  So I'll share my stories to get the ball rolling.

I invite you to join me on this journey by sharing your thoughts, questions and experiences of Parkinson's on this blog. Until next time, take care.