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!
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