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.
Monday 31 December 2012
Friday 14 December 2012
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
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
Wednesday 7 November 2012
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!
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!
Sunday 30 September 2012
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.
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.
Tuesday 18 September 2012
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
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
Monday 27 August 2012
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.
Wednesday 25 July 2012
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.
Sunday 1 July 2012
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.
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