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
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