richard-fredericks
Forum Replies Created
-
richard-fredericks
MemberMarch 17, 2020 at 4:25 pm in reply to: Do you experience muscle twitching?Holy cow, this post has traction!
My ALS was very pronounced on my left side. The right side was high functioning. Hyper-reflexia was more pronounced on the left side. And fasiculations were limited to that side as well. Life was good. I only had a 1/2 case of ALS.
I still remember the night of twitches in my right leg. That was an un-welcomed visit.
Fast forwarding two years, the twitches are pretty rare at this point. But the spasms are intense and only occur at night. I am rewarded with a spasm any time I change sleeping positions and extend a leg or arm. Cramps sometimes come along for a ride.
I am appreciative of this collective insight. There are lots of ideas to try. Many thanks for your openness and sharing.
-
At some point, all men have the, “oh my God, I’m becoming just like my father” experience. Dad was an only child and the product of the male-centric 40s and 50s. He brimmed with confidence and thrived on the attention that he catalyzed. Asking for things was simply a cultural reflex, as natural as breathing. I was frequently the askee. It drove me a bit crazy and I resolved to never become that person.
But ALS changes things. At 67 years of age I’m comparable to my father at 90. I have become the asker. To properly obsess about this, I maintain a scorecard. I shoot for a maximum of 10 “asks” a day. I even have a “no ask Saturday”. (Generally, I hold out until about 8:30 AM.) Allison, my askee, is frustrated. She loves caring for me. I am actually reducing her sense of usefulness.
My perspective needs to change. Turning into my dad is not all bad. His rearview mirror focused on a life lived well. Nothing but high notes. Ultimately, he was simply a nice guy – the bringer of jokes, the provider of a good word, and completely in love with those around him. Perhaps I can flip the script. It is not too late to be just like the old man. I might even learn to ask for a little help.
-
These stories are inspiring. They are also a bit intimidating in their scope and vigor. I feel like a bit of a piker in the relative smallness of my efforts. Yet, I find some common threads including perseverance, realization, and a bit of fun.
For me, it has been a long process. Looking back, there are discrete phases and a purpose for each. Four years ago I was symptomatic but not yet labeled. This was my “journey” phase. By bicycle, canoe, or foot I embarked on multi-day journeys. The focus was self-reflection and achieving small goals. (And I will admit, purchasing new gear was part of the allure.) It was clear that my diminished self was pretty challenged by the hills of Vermont or the lakes of the Adirondacks. But it was helpful to stare limits right in the eye. Letting go matters if you’re going to transition to next. And testing your limits is a precursor to letting go.
The next phase was “out and about”. My trusty walker and I made it a point to shop, travel a bit, and stay active. Essentially, daily task was the exercise. The key point: make it rigorous. I would go to Home Depot to buy a washer. And I would park in the distant corner of the lot. This is not as sexy as a treadmill but serves an equal purpose. And there are a lot of miles in a big box store or supermarket.
And now, the “device era”. Exercise is no longer an incidental. In this phase, exercise requires a sense of purpose. It is tempting to wobble out of bed and fall into my power chair. It is comfortable, safe, and expedient. Instead, I try to use the walker for an hour in the morning. (Let’s be real. This includes watching the Today show and drinking coffee.) But I am up and around multiple times and it is a real test.
Going to the toilet is the new going to the fitness center. There are a number of grab bars and I do squats and leg extensions. I am home alone during the day. Thankfully. (A shout out to Dagmar for inspiring this.) Bed is the greatest test. It is also the greatest return. Being able to find comfort, manage bedding, and achieve rest remains a life pleasure. Accordingly I shift positions by rolling, crab myself sideways, and do a few modified crunches.
Who knew how much exercise opportunity is available if you are adaptive?
-
I got my power chair through Medicare. They collaborated with OT folks at Dartmouth Hitchcock Medical Center. The OT used my current status to predict future degradation. This was very critical to the process. Otherwise, my chair would’ve fallen short of full functionality. I spent $2000 out-of-pocket for the elevate function. It is unfathomable that this wouldn’t have been covered. But these are the vagaries in the system.
In total, it took 20 weeks from sizing to delivery. The approval process took most of that cycle. The ALS foundation of Northern New England lent me a power chair while mine was in process. This was a godsend.
It is important to understand your rate of decline and get assistive devices in process before they are actually needed. The challenge is finding a sympathetic and savvy provider who can maneuver through the approval process. They need to build a compelling case based on future requirements. The system is more interested in the “here and now”.
The chair is a miracle. I wouldn’t want to contemplate life without it.
-
I am still working. My commute is easy, from bedroom to an office alcove. Fortunately, my work as a leadership coach can take place on teleconference as effectively as in person. And with voice-recognition software I can provide follow-up notations. I will be challenged as my voice starts to give way. I will take wise counsel from this group on practices to preserve elocution.
I am also challenged by fatigue and try to sneak a nap each afternoon. Work is highly engaging and keeps me connected to very bright people in the world beyond my condo’s wall.