The selections below are excerpts from my journal in the early days of my journey with my movement disorder, Primary Lateral Sclerosis. They are raw. I have resisted the urge to edit my words, although I have X'd out certain names and references, and added words in a few places for clarification. I guess I "X'd" out certain things to protect the innocent, of course, but also due to my own limitations and fear of exposing certain vulnerabilities. My thoughts below were never meant for anyone else's eyes, but something inspires me to share them with you. (Are you afraid, yet?!) You will note misdiagnoses, misspellings, and missing grammar, but my thoughts are raw as I said, and part of what I strive for is authenticity...
Tuesday, Nov 10, 2015 10:43 PM
Yesterday I found out that I probably have Parkinson's- early onset signs. I continue to hold onto the hope of Morgan Lewis {job prospect}, and look at {XXX}'s note that says this will be the year of good things…every day, every movement, is a test of my symptoms…how does it feel, going up, going down, running, stepping, writing…I am not even sure what this means…but I do know it is not going away…the {torn} rotator cuff seems like a non-issue, and I hope it continues to stay on the back burner…not sure who to tell/how to tell/what to tell…but I need support and that means telling some people…not sure if I feel numbness in the quad or weakness or not…I want to do a baseline each month, starting with how long it takes me to write "The quick brown fox jumps over the lazy dog."…here we go…47.66 seconds. I asked someone at work the diff in how I move today from 3 yrs ago, and he said I "hesitate" when I move…he's quite astute, then, b/c that is right on the money… ok, got to get some rest…
Thur Nov 12 8:43 PM
Day off today…legs were shot all day yesterday at work…feel fatigue in them as though I have been balancing on balance ball all day…wonder if that is part of the deal? Saw Ron, Jeff, and Mike {XXXXXXX} last night at Blue on Highland…nice time; told jeff and lost it when I did…I've never felt fatigue in the legs like this before…hope they recover for the fri/sat/sun {work} stint…Kara here tonight! She always makes the world look so bright!
Sat Nov 14 11:36 AM
Ran this a.m….not too bad, a few studders. Started some hop drills but I really can't hop on that leg. Used to say that I know I haven't had great luck recently, but I always had my health-- now even that is threatened…but I still have the gravitas to be positive most of the time, and usually only not so by myself…I liken my "running" (i.e., 13 min/mile) to a newborn colt that is learning how to run…the leg seems to freeze and be more like a stick…I want to tell certain people and want people to know but it is hard…{XXX} now seems uninterested since I won't have the conversation over text…there is no greater gift than time for people…I sure hope it doesn't go to my face…and hope I make it through the turkey trot! …but today I go to work and am hopeful for great connections w/people…
Mon Nov 16 9:08 AM
12 laps, 41 minutes
Worked yesterday…legs often feel like rubber at work…and often feel like I walk in a crooked line…it takes me longer to start walking from a standstill, and I often will reach out to hold something if available…seems a bit better w/movement in the morning…it's hard to tell between strength and feeling in the quad…and the cold weather seems to exacerbate the hesitation of movement…People can now tell that it takes me time to write something on paper like a phone number…and I feel it is noticeable when I walk-- sometimes more than others…Looking back over the years, I can now see that things I noticed 2 even 3 years ago--were the start of this…perhaps most noticeable on the one-legged hops I did up the WC "stadium" stairs…became harder-- much less fluid-- on the right, and then so much harder to the point where I can no longer manage to hop even one stair on the right, and I was doing 15 sets of 20 in succession on the right leg…that perhaps is the most dramatic change or indicator and perhaps the earliest…
Wed Nov 18 11:36 AM
12 laps, 41 min, leg not bad
Need to figure out how/what to tell kids…now I have a cold as I go into my 5 day marathon at {work}…uggh…and I have nothing going on {XXX}…great movie at jeff's last night…Stop at Nothing…wonder if cramps are in any way associated w/pd {Parkinson's Disease}? I sometimes have them at night…some more than others…joint stiffness is definitely there…we'll see how I do today…the isolation is mounting the longer I have this and people don't know…maybe there is a potential I don't have it? Feel "in-between" and in limbo somehow…
{2016}
Sat April 23
10 laps, 41 min…16% decrease in 6 months
53 seconds "quick brown fox"…from 47…13% decrease in 6 months
First day on bike last night…stationary lemond…mechanics tough on right leg…pedaling squares…slow rpm…weak…also road this a.m….45 min last night and this a.m…
Sun May 22
4 laps 18 min…32% slower than Nov…writing 10% slower…speaking w/Neurocat tomorrow…have had bike for a few weeks…feels good on leg…not sure I recognize diff in movement…I have no marker or benchmark…experimenting w/alternative wkout routines…speedhike, bike, kettlebell based…haven't done much pure running…haven't been able to build much support from friends etc…I do wonder why…this is a very lonely journey…feels like a dirty secret in ways…want to tell people but don't want to tell them at same time…feel like doc support team is big void…that no one really cares…
Need to find way to stay positive on all fronts…the weight gets heavy, the silence deafening, the loneliness sad…
Wow did West Side Story get to me…as the theatre always does…"there's a time for us…a place for us…" I just balled when they sang that at the end…I wanted to tell someone, but there is no one even to tell…but I told the kids…
Thus June 16
120 rpm on the bike is max for about 10 seconds…fatigue in the legs has become severe over the last several weeks-- no diff in morning or night…stiffness while sleeping continues on my haunches w/slight cramping…calves are often tight…my leg moved ok yesterday (kbell wkout in morning) and was probably the best day I have had in a while.
Frustrated w/{XX-Doc office} of course…I really don't think that anyone there cares really…
I need something to look forward to…
Keeping up w/ the following sked for wkouts during a typical week:
Sunday: off
Monday: speed hike intervals…31 for 35 min on 20m steep pitch
Tuesday: 45 min spin bike
Wed: 30 min kettlebell swings, cleans…fireflies, run in place, bicycle kicks, ballet scissors
Thur: 45 min spin bike
Fri: 45 min spin bike
Sat: Kettlebells (see Wed above)
(should add "bleecher step-ups"…see below june 27)
Lack of progress on the {XXX} front is killing me…along w/the loneliness and isolation…something has to break for me…
Tue, June 21
…not sure what I wanted to write…wkouts going well…fatigue in legs (and overall) is prevalent and heavy…esp at {XXX}…not sure what to do or what next step should be…
Had a disappointing and somewhat deflating call w/{XXX} at {Doc's office}…found her condescending and unhelpful, really….not sure if I should switch docs or not…feel very much in limbo…need to get in and stay entrenched in the job search…
Just read this from the beginning…struck by how early - NOV - I wrote about the fatigue…
Mon, June 27
Wkly con call set up w/Beth and Din…w/be great and helpful. Wkout yesterday was step-ups at clocker bleechers…surprised that right leg still significantly stronger than left (always the dominant rt leg and has been stronger for a while…but I performed better than I thought 75-100 on rt and about 50-75 on left…then ran in field and was also much better than I expected. And legs were better at work yesterday for the 1st time in weeks…day off {...} today…
Need to send note request to {Doctor} to send to {Doc office) today…million things to do today…
For journal 7/14/2016
Where do I begin… It was a nasty fall… I leave for surgery on the hand soon after the fiasco of the last two days… I cannot believe what has been added to my challenges… I cannot believe I am even surviving at this point. I need to {XXX} and I am so desperate to do so... Now I have to deal with atrial fibrillation… {XXX}… I really think if I can just work my way out of {XXX} into some sort of meaningful role wherever that is… That will be the start… But for today, I am ready for battle and will soon be on my way to surgery…
Sent from my iPhone
Fri, Aug 19
Just cut and pasted the previous entry from a dictation on my phone…cluster…ok before I go on too long, I did the benchmark run test tonight and results weren't pretty…12 laps 46:30…wtf…recall that's from 41:00 Nov…I thought this was supposed to be slow progression…{XXX...}
Hand? Wish I hadn't even had surgery…6 wks out of wk at the {worst} time of year…ok I can deal…Cutty, oh {Cuttyhunk}…magic again; even w/no sleep b/c of the f'ing cast being too f'ing tight…and they take no responsibility…at least we had the whole island doing the Cuttyhunk Shuffle…and last wkend in Dux was more family love…I have done a lot of good things-- I can't lose sight of that…hand still killing me {XXX}... Adventure of a Lifetime…etc-- I really just want to be able to do the moves those gorilla's do…and that would be great for my PD…I have so much to write and empty out of my head…toughest is losing my ability to move to the music…every runner I see, I admire how beautiful their gait…
Still lonely…save for a friend here and there…
{XXX...}…wait- here comes adv of a lifetime…all things stop-- I dance!...wow…I'm getting that move down!
Sat Aug 20
{XXX}...Wonder if there is anything re: {my PT's} perspective…something is holding her back on the {PD} diagnosis…stroke-related? Rigidity vs spasticity…
Frustration {XXX} high…but I won't be broken; there has to be an opening somewhere and I will find it…
Mon Aug 22
{XXX} …I even think I have come to enjoy being in hospitals…maybe it's the people since I'm so isolated…maybe it's the caring…
Sat Aug 27
{New doctor}
Leave your broken windows open, and in the light just shines…
Well who knows now; but 1 day at a time…I guess it will be good to know what I am up against at some point…or not depending on what it is…these are some lonely days and nights. {XXX} communicate w/me less, and that is one of my few lifelines; at least I have a few…a few strong ones at that! Got to keep the negative messaging to a minimum and reinforce the positive messages…
{XXX}...{XXX}…
Onward and upward!
"Sweet are the uses of adversity." William Shakespeare, "As You Like It"
Epilogue: The analysis and instincts of my PT referenced in the Aug 20 entry above proved to be correct, although in direct opposition to the "Classic Parkinson's Disease" diagnosis of my neurologist at the time. Extensive testing with another neurologist did in fact rule out PD, and on August 25, 2016, I was diagnosed with Spinal Cerebellar Ataxia ("SCA"), which comes in more than 40 different flavors, each with its own set symptoms and prognoses. We had "narrowed" it down to one of 40+ potential diagnoses. (Really?!) Frustrated and eventually dissatisfied with the level of attention I thought I deserved, my team found the center where I am currently being treated, and where I received my eventual diagnosis of Primary Lateral Sclerosis on March 26, 2018. I now believe that my diagnosis is accurate.
Question everything.
Charge!