March 8, 2018
When several friends have to ask `How are You Doing`that means i am slacking on my updates. So highlights include of the last 3 weeks seem to revolve around getting back to the new normal.
I was very much looking forward to getting my stitches out Friday march 2. It was a turning point because after that i didn`t feel like an early escapee from the hospital. I was quite self conscious – even though my hair is growing back fast – of the black stitches sticking up.
With my energy up after 2 weeks i started to walk the kids to and from school. It was great to be welcomed back by the `pick up` parents who wait with each other in all weather.
Another marker is back to church. I eased into it attending special event on Friday night mar 2 and attended full on at Sunday worship. The church community at Bedford United has been gold with prayers, well wishes and casseroles (See article: Love in a casserole dish)
One highlight was return of social life. When Maggie and Stu suggested dropping off a pizza, Andrea suggested we have an pizza making party. Their kids are the same age as ours . We had a blast and a arousing game of table hockey before supper and we played Apples to Apples after. Fun and chaos of kids. Back to being a parent.
All this has a backdrop of ongoing negotiating for our new Bedford Orthotics building across the street. Anybody know a trustworthy contractor
Movement wise i still have some passive effect of the electodes being in place. Getting up at night i am much less stiff. And i can walk well if slower even when off pills. When i take pills its later in the day that my right foot starts to wobble.
My head is also numb in several spots. A lot of nerves need to regen after 3 cuts in the noggin.
My stimulator gets turned on march 19. so we`ll see how well i can dance after that.
so that`s how are I`m doing, thanks for asking!
March 8, 2018
Trying times bring out the best in people. Stories of working together after hurricanes, etc. are common. But there is one gesture that gets under reported — the gift of prepared food.
A couple times a week since my brain surgery on Feb 16 we have been blessed with getting a meal dropped off. Its such a relief, the donors may have no idea what a treat this is, not to worry about making food
I thank my sisters for brilliantly organized the modern online version of what we did in the old days know as the casserole drop off. This is a corner stone of a compassionate community of Parrsboro where i grew up. Death in the family, drop off a casserole; illness in family, drop off casserole. It is surprising how this takes a great load off the mind of the caregiver. Andrea who is back to work full time after spending the first week at home with me.
This simple gesture so appreciated that is stuff of goodness. There is something beautiful about making food for somebody in need. Think about it like knitting a scarf when you already know who`s receiving it. Every stitch is like a prayer. Maybe a casserole has a prayer or at least the thought of the recipient in the food makers mind and heart. Love doesn`t come in a finer dish.
February 23, 2018
Excerpt from My Book of Happy
Kaleigh Mulroy is 9 years old and already has her priorities strait. She produced my own version of the Book of Happy featuring a list off what a makes me happy. the list not exhausted yet but goes like this, and in this order: sleep, playing with kids, camping,singing, and of course eating.
What’s in Your book of happy?
February 21, 2018
Home Agan Click Here
Whenever we returned from a camping trip or some such adventure one person (usually me the driver) would announce “Home again, home again” someone else would cap it off with “jiggety jig!” and that’s all i need to say about that!
February 16, 2018
A week before the DBS operation I signed the go ahead with my deep brain stimulation surgery on Feb 16. legal liability thing so I was made aware of all the potential risks of surgery, all the standards like stoke, paralysis and death. I read through like I read through the terms of new software, not.
But then i sat back and reflected on the power of my signature, a mere scratch of ink on a page, an how it gives assent for a huge go ahead the will change life as I currently live it.
Tangent>> I want to note the irony of my first PD symptoms were difficult signing my name (and brushing my teeth. ) PD usually starts of on one side of the body, for me the right side, for Michael J Fox it all began with a twitching baby finger on his left hand. That marked the beginning of the new me.
The signature as a cosmic pivot point. An abupt turn from our current reality into a new venture. has been the marque where by the old self is left behind/cast off and a new self opens. Here are a few thresholds where I signed on the dotted line and astral projected to a new reality, or newer unimagined version of me
Freedom My first memorable signature was my drivers license. I was beyond excited to be an official driver. (i had driven tractors, hay trucks, assorted 1/2 tons on the dirt roads and fields of our family farm since i could reach the pedals. I even put many miles on my first car at age 15, a 1964 mini. In Parrsboro the driver inspector comes from Amherst to test every Friday at the the legion. My 16th birthday was the day before. Heaven. Thus began a long and beautiful relationship with the auto and the joy of the open road. One example of a life time of signatures.
Other signature moments where life as we knew it was transformed and new identity or life began include:
- Student loan agreement for enabling me to attend University
- Credit card application
- Job Contract with school board as teacher or ns gov position as family violence prevention training officer
- One signature to get married the first time and about 7 signatures to get unmarried.
Next time you pick up a pen as you sign your old life away to make ready for the new you to emerge, just remember, you’ve done it once or twice before.
February 16, 2018
The two symptoms of Parkinon’s that DBS does not claim to help are balance and voice. If it’s an issue now it will likely still be an issue after. Balance is no big deal for me but my voice quality is. When my med cycle begins to wear off I can sense my right leg starting to drag and my voice getting weak. And in the case of buddy at the shop that sold me an electric motor, my voice dropped out entirely. Even my best tricks for my music therapist wouldnt grab. I could only connect in gestures and spit out a few phrases. I returned the motor the next day with full voice and a PDEduK8 moment to explain why.
So DBS doesn’t promise to improve voice and may make it worse. That got me thinking as to what words i would speak last before being put under. What would be the last words you would utter? Sure there are other ways to communicate, reference ASL American Sign Language and that cool voice generator jigger that Stephen Hawking uses.
Imagine you had a condition where you knew you wouldn’t be able to orally speak words. What would be your last 100 words? Make a list of which words pop to mind. Assuming the prepositions and joining words are gone or do not count what would be your top 10? Reflection : How does choosing that list provide insight or parallels into your driving values and principles.
The motivational speaker in me is having fun right now!
AND what if this mysterious condition were tweaked a bit and you had only 100 words that you could keep and use unfettered for the remainder of your life. If you could only speak from a vocabulary of 100 words what would they be? Would the last 100 word list be similar than the only 100 words list?
Start with thank you and run your list from there. i look forward with curiousty.
February 16, 2018
I wonder how it all changes?
Before DBS #2
Up and doing yoga from 530. No dystonia (twisting out left calf muscle) today. Light stagger took usual pills 350mg levodopa with bowl of Kashi cereal at 7:30 kicked in at 8:15 with a typical little right leg wiggle and dance as prelude about 5 min before i smooth out. Just in time to walk smoothly to school and back with kids. I thought we had half a chance to get there on time but late as usual, Vance “fell” dramatically 25 times (he counted each dramatic flop) on the black ice. i vowed never to “hurry up” a kid being creative.
Leg starts to stiffen at 9:15. Next pills 9:20 with Helle’s heavy bread and cherry jam, kicks in about 45 min later. Dyskinetic (involuntary swing and swaying) at my desk past 1130.
12 40 go “off” as stiff set in again. Andreas home made chix soup probably not a good idea to have protein then chase it with levodopa pills that lose the competition for absorption up against protein. You’d thínk i’d learn by now after 13 years (this May) although i didnt start drugs till or 5 years into it. i was at PD world congress in glasgow in 2010 and don’t recall taking much pills.
2pm still stiff since 1240 pills didn t kick in but will drive to get kids it will take a long time to walk. For some reason walking stiff doesn’t affect driving (or bike riding), my reflexes are still sharp. that was how i drove the famous white knuckle Amalfi coast road in italy last a may.
2pm Parents visit not talking very good but 2:15 try another round of pills. Pretty stiff picking kids up with Dad at 2:40 back “On” by 3 pm swaying and talking fine while mom and dad visited and kids played.
Dropped off smooth movement at 6 and took last round of 350mg pill as directed to stop to be off for tomorrows DBs surgery. Note i left my azilect (rasagline) bottle at the cottage since the weekend, oops it was a mao-b inhibitor that costs 8$ per 1mg pill never did think it did much.
Vance and i shower till 9 and both kids wanted to sleep on either side but i need to be on the edge in order to getup. Fortunately Vance fell asleep while hannah and i having cereral so conflict avoided. Restless with mind racing about tomorrow and starting to feel hungry. 1am typing with both hands well and light stagger. Post this unusual day.