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.


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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.
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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.

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