Parkinson’s Log Entry #2
If PD is nothing else, it’s progressive… always changing, evolving…generally toward the negative, but as if to surprise us, sometimes toward the positive.
Thus, JV is forced to adapt to changes in her condition. Much of her adaptation is subconscious. As 3rd person in scene I can detect her changes. Sometimes she tells me about them.
In short, she is an actor in her own play about PD, if you get my drift. PD is both producer and director. Question for JV, how much improv can or should she do?
1/2/2016 JV points out she is tired and stays in house all day. Not like her.
1/4/2016 3 days later, coming off tennis court, “I had one of my best days in months on court. My side won consistently. Back finally gave out at end.”
JV was psyched, “Let’s go to garden center, buy flowers, bromeliads.” 1st time in at least 2 years.
Get home, and JV insists on cooking supper (I usually make lunches and suppers). An excellent pasta dish. Reminds me what a good cook JV is, when she has strength and appetite.
When JV feels good she rocks. Was afraid she was way overdoing it. A crash later?
1/21/2016 Appointment with Dr Wey her neurologist. He looked closely at JV as he walked in room. He knew. He smiled. “I can tell you’re doing well”
His usual exam. He holds her hands, moves them up and down to check flexibility. “Stamp your feet. Wiggle your hands. Bring fingers together (demonstrates) tap, tap, tap. Let’s see you walk.” JV leads him out of room. On return, “You’re doing well.”
In these sessions I’m one with questions. JV more laid back.
I press him on PD meds. “If she is doing so well can she stop her levadopa?”
Dr…”She can reduce, but not stop. How about pill splitting?”
PV…what about deep brain stimulation (DBS)?
Dr…”JV is qualified, because she responded well to Levadopa, that’s how I knew she had PD in the 1st place. Good chance DBS would work. But she hardly has any shakes or tremors, she’s not overly stiff. At this stage of game would say DBS would be “overkill.” Not worth risk, she’s doing well on her meds, would suggest she keeps up, maybe with reduced dosage. Try reducing, see how she feels.”
PV…”Embryonic stem cell.”
Dr…”I want to see more research. Much of what we know now, from rat and dog studies, we need more human trials. We don’t really know “if,” “how long” or “what complications.”
As we leave Dr Wey escorts us to check out desk, and has RN print out a note verifying JV as PD, and that she can only stand for a short while (In prep for another European cruise in Nov.)
We walk out feeling good, even giddy.
2/17/2016 (A good couple of weeks, and then)…”I feel nauseous this morning, stiff. Didn’t sleep too well last night, had trouble turning in bed.
(Some PDers recommend satin or silk sheets to help with getting into and out of bed, and turning.)
3/2/2016 Been feeling better, stronger. JV…”I served overhead style (not underhanded) for 1st time this season.”
3/19/2016 JV is increasingly conscious of losing balance dangers. Gave up riding her 2-wheel bike over 4 years ago. I’ve been encouraging her to get a 3-wheeler, a trike, she borrowed one from a neighbor who bought it for his mother.
“I didn’t like it, found it hard to turn. Let me make my own decision, OK!” A touch of irritation in her voice.
Maybe in deference to me, JV borrows a cane to help her maneuver around house from our next door neighbor who is 92.
3/23/2016 JV and I both buy canes from CVS. Mine is to help me get to bed after I fall asleep watching TV. I’m very wobbly after coming out of a deep sleep. I use mine regularly, not JV. So now I have 2 canes to maneuver around house.
4/5/2016 JV has been bothered by a sharp back pain that extends down her right leg.
PV…”Sounds like sciatica.”
One of her pool bobbing buddies had gone to a physical therapist (PT) Dr Jake Berman for tennis elbow. He was recommended by WTC’s tennis pro.
As reported by pool friend…”Dr Berman never touched my elbow. He asked about my problem, found a knot on my neck, let me feel it, and he pushed and pinched that. Stretched my arm and shoulder, that was it. Took no more than an hour. Today I played, no pain at all. Amazing. You should call Dr Berman.
A call is made, and JV is talking to Dr Berman. “Can you come in tomorrow at 9:00 AM for an hour appointment.”
2 days later JV plays tennis, reports…”Back feels better than it has in years. Dr Berman didn’t think my back pain was sciatic related. He could be right.
4/7/2016 JV answers phone at 8:45, on phone for awhile.
PV…”Who was that.”
“Jake, Jake from State Farm.”
I’m not as mentally quick as JV these days, should have said…”What are you wearing, Jake?”
“Dr Berman (Jake) said he would call, and he did. He wanted to know how I was doing, and he adjusted one of my stretches.
PV…”Jake, Jake from State Farm, should quit his day job, got a good future in PT.”
4/26 – 5/23 2016 Days of Wine and Roses in a PD World
During this month, we returned to Fairfield CT, with 2 weeks in Madison, WI.
One advantage of living in Fairfield CT, an upscale community. A book club-type gathering was attended by JV and daughter Rebecca about a new book written by one of JV’s favorite authors, Anna Quindlen (AQ) and who also was a participant? The author herself.
I sent a question with JV…”How do you write?” I’m always interested to hear how accomplished authors answer this ambiguous question.
AQ…”6 – 7 hours a day, it’s my job. Sometimes I’ve been mulling around with a catch phase or an interesting ending, for the latter I work backwards. Sometimes I start without knowing where I’m going, I wait for story to introduce itself.”
5/23 – 6/7 2016 We made a 2-week trip to Madison WI to visit Jessica, and family. Mike is a skilled craftsman and Jessica is a yoga instructor, also works for Madison’s Parks and Recreation Dept.
During this month, in Naples FL and Fairfield CT, JV maintained a spartan regimen of regular exercises. Power walks (measured her steps with iPhone, did 3-4 miles a day, 10,000 steps), played doubles tennis. Some days, she walked, played tennis, then swam with buoyant barbells.
And oh yes, she crawled home, not a super hero, she.
Still amazing, what’s even more amazing, she’s definitely holding her PD at bay.
JV reflecting on her PD. “Yes, I seem to be doing well, but my good feeling…it’s like it’s illusory, up one day, down the next. Also, I’m always nauseous in the morning. (She’s never thrown up, but she has taken a trash can to the bathroom). By noon I start feeling better, feel like coffee, a meal. Also I generally have a terrible taste in my mouth. Can’t eat much, but I have stopped losing weight.”
PV…”Would be good if you gained a few pounds.”
JV…”No, I like my new body weight.”
(Her tone of voice, this is not negotiable).
(Chalk up this PD phase to “days of roses, not much wine.”)
JV…”Odd thing about my PD, when I’m relaxed or sleeping I have no tremors, my swaying only starts when I’m doing something.”
(JV’s PD is not a question of mind over matter, it’s matter over mind. JV’s PD is like a sleeping dog, unless dog is awakened and becomes active, then JV’s dopa-starved brain wakes up and takes over.)
Levadopa helps reduce stiffness and tremors when JV is active, but this PD med is like a ticking time bomb, dyskinesia lurking in background ready to pounce.
Not sure how much longer she should take Levadopa. I’ve read that some PDers prefer shakes to stiffness that Levadopa helps prevent. Levadopa helps with shaking, stiffness, but a medicine (like an anti-dote) is needed to control dyskenisia brought on by Levadopa. As mentioned earlier, recently, FDA approved such a medicine. More work is needed to improve its effectiveness…say from 20% to 50% reduction in dyskenisia. Incremental steps shouldn’t satisfy us.