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