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