The below diary piece is my effort to show how much work
combating a progressive disease can require. It’s not the way, it’s just my way. This isn’t to brag or to make anyone feel inadequate
or unproductive, though I suspect many of you will relate to certain aspects of
this experience. We’ve all got to fight this thing any way we can.
9 am: Awakened by alarm, sit up in bed, drag the morning
drugs out of my nightstand. Begin the day by taking one Ampyra, two
Mycophenelate (the drug intended to aid with organ transplant that is supposed
to help slow the progression of MS). Scooter to bathroom, empty bladder. Take
first Tizanidine tablet of day.
Have breakfast of low sugar, high fiber cereal with
soymilk. Fresh berries if they are available. Go back to
bedroom/office, call insurance company, drug companies as required. This
can suck up an hour of a typical morning. Depending on the day, I will use
some of the morning for life coaching. Between 11 am and 12 pm, I head
over to the gym, located conveniently down the block from my apartment. I
spend 1 ½ - 2 hours using a variety of machines to maintain my strength.
Go home. Make organic protein shake with more soymilk. Take
the following vitamin supplements: Vitamin D, calcium/magnesium with green food
base, Vitamin B complex, fish oil, candidastat (yeast balance support), HLC
(human lactic commensals). If any of these are unfamiliar to you, Dr.
Bates, the naturopathic doctor at the MS facility where I am treated,
prescribed them in order to “balance out the bacteria in my gut.” My
neuro, Dr. Williams, says there’s a lot going on in the gut. So far, this
seems to have been beneficial and I have been feeling a little stronger
lately. Supplement protein shake with protein/energy bar. Eat a peach
(as the Allman Brothers famously proclaimed).
On the days I don’t go to the gym, I climb onto the bed
around mid-morning and do the following: four sets of 10 mid-section lifts
and push-ups, 40 hip rolls on each side of my body; with stomach on bed, do 50
back crunches, stretch each leg for several minutes, two sets of 50 back
crunches with back on bed. Lie on back, hang one leg off side of bed, do
four sets of 6-8 leg lifts. Switch sides, repeat with other leg.
Take second Tizanidine of day. Pop slippery elm tablet (for
general body health) into mouth, one of five to ten I’ll take during the
day. They are much easier to swallow/suck on than the powder mixed with
water above-mentioned Dr. Bates recommended. That combo made me want to
puke, too sweet, icky.
Late afternoon, on days I don’t have the full workout, I’ll
scooter over to the gym for an upper-body aerobic workout. Don’t mean to
brag, but I just set my personal distance record, 2.9 miles in 20
minutes. Note to self: got to get to 3 miles!
Around dinnertime, I take the third Tizanidine of the
day. Must be careful about drinking alcohol too close to consumption ’cuz
it can make me semi-unconscious, though I’ve been cutting back on quantity
since doc and I discussed how it can help with spasticity but also make me
somewhat weaker. That was the problem with Baclofen, which helped with
spasticity but took away some strength, especially over the long term. I
am fortunate to have a lovely wife who makes healthy meals that my Dr. Bates
approves of, with lots of greens and proteins. It helps to live two minutes
away from the best greenmarket in the city. Trying to adhere to recommended
protocol of Dr. Robert Lustig, a nationally recognized “anti-sugar” advocate
who was on Alec Baldwin’s recent “Here’s The Thing” podcast (highly recommended).
He advised us all to eat lots of browns and greens.
Come nine o’clock or so must remember to take second Ampyra
of the day (every 12 hours). This can be a problem when I’m out or doing
something social. The short of it is, once in a while, once a week or so,
I forget. And if I forget, I do notice a balance/strength loss (perhaps
it’s psychological, I don’t know). Oy!
Somewhere in the 9-11 pm zone, when I’m home, I will go to
the living room to spend about a half-hour doing sit-to-stand exercises with my
walker, maybe even take a few steps. Yo, I be walking again someday! Just
have to keep working at it. I have braces to aid with this endeavor. Add 10
or 15 minutes to put these fuckers on.
Afterwards, I will go to the bedroom and do upper body
exercises with this stretchy, rubber device that attaches to the end of my
bed. Three sets of four different exercises sitting in my desk
chair. Hopefully The Daily Show
is on to make them go faster. When I remember, I will put on a special boot
to keep my left foot straight (I’d draw it for you if my skills were
worth a damn).
Afterwards or in the middle of sets, I prepare bed-time
concoction of following: two Tizanidine, two Baclofen, two Mycophenelate, one
magnesium tablet, one LDN (low dose Naltrexone), one Clonazepam. (Note:
taking Tizanidine and Baclofen bad for strength during the day, excellent for
sleep at night. Prior to this regimen I’d been a notorious insomniac.)
In bed by 1 am. Guess that makes me a night owl or
something… Now I’m tired, I really gotta go to sleep.
Oh, one last thing: middle of night, half-asleep, I reach
over and take one more Clonazepam, Baclofen, and Tizanidine to ensure a good
night’s sleep.
9 am: wake up, do it all over again.
If you have your own stories of these kind of adventures I sure would like to hear about them.
Thank you and have a superior week. Stay cool!
Best Wishes,
Marc
marc@empirelifecoaching.com
And for anyone with a hankering to hear the classic Beatles classic tune, go here:
http://www.youtube.com/watch?v=P-Q9D4dcYng
