JV’s Parkinson’s Log

JV’s Parkinson’s Log

2/13/13 JV has her 1st MD office visit related to Parkinson’s Disease (PD). Dr Lust referred her to Dr Wey. “You’re showing no outward signs of PD…tremors, shuffling gate. I’m not ready yet to give you PD diagnosis.”

1/14/15 Almost a year after JV’s 1st office visit, Dr Wey diagnoses her with PD; puts her on Carbadoba/Levodopa.

In 2013 I had noticed JV had changed her walking gait. JV seemed to drag her right leg. With this handicap, I could easily keep up with her. Our friends noticed JV had trouble walking. I googled “gait change” to find out gate change is an early sign of Alzeihmer’s. I was somewhat relieved to learn JV “only” had PD.

9/10/15 Back in Fairfield, JV complains about back pain. JV…”My back only feels good when I am walking. Moreover, I should tell you Somtimes I panic in car. It must be my brain, I feel stressed; I hardly can sit in car while you drive.”

9/19 JV almost faints at end of one of Ana’s field hockey games. We had put away our bag chairs, and we were waiting to leave. I had to help her to car.

9/20 Later, while at one of Dom’s football games, JV explains to Rebecca…”I’m having trouble standing as we leave one of Dom’s games, my back kills me (Becca enjoys chatting with her friends before leaving.) “Give me your car keys so at least we can sit in car while waiting.” Rebecca…”If we drive separately, at least tell me you’re going.”

9/26 I notice JV’s involuntary movements seem to be more frequent…a sight rocking movement, slight waving of arms. JV doesn’t seem to notice, but I do, and her movement bothers me. Still not used to seeing JV in this condition, and I’m more and more impressed by how JV has accepted her PD state. At least outwardly, her mood is upbeat, positive. She’s a poster child of how to deal with a progressive condition such as PD. Thinking about how I reacted to CLL, JV has blown me away. In fact, her reaction has helped me to better accept my condition, and I feel better as a consequence. JV is my role model.

10/1 2:00 AM JV talks loudly in her sleep. She sounded fearful but her word slurring made it hard to tell what she was saying. Her mind obviously was active; she was acting out. Not this time, but she has kicked me. Is it time I take knee pads and helmet to bed?

10/10 JV was fatigued today. She took a rare nap. Complained of being sleepy.

10/12 JV screams in her sleep. Startled me. Took me awhile to settle down again.

parkinsons-team10/13 I mentioned MyParkinsonsTeam social network to someone whose wife has PD, thinking it might be helpful for both of them. He walked away as if he couldn’t be bothered. I immediately thought…”He’s in denial.”

I should add JV also does not to like to read entries from MyParkinsonsTeam. Guess she’s not ready yet. I’m her eyes and ears in this regard. Believe me she is not in denial. I’ve been very guilty of that myself. She never has, or if she has, her denial has been under the radar. I’ll always admire her for that.

In words of another PDer…”YES—don’t ever be afraid to say that you have PD. We have a disease that we have NO control over, no matter what the so-called experts like to say. People are so much more understanding and tolerant and helpful if we tell them.”

10/14 Dr. Wey appointment today. At 6:30…”I feel dizzy, have to sit down.” She’s fine when we meet Dr. Wey. He gives her the usual assessment. “You’re doing well.”

We both like Dr. Wey. His relaxed attitude has a calming affect on JV. We suggested to an acquaintance with PD that she should see if Dr. Wey can fit her in. Later…”I loved Dr. Wey. I’m switching to him full time. He actually touched me, was very attentive. My old neurologist always kept distance. He was perfunctory, always seemed rushed. Dr. Wey even changed my medication. Thank you so much for the referral.”

10/21 JV…”I’m having more trouble understanding this Harper’s article on Presidential elections.” JV seemed exasperated, she’s always been an avid reader, book club type.

PV…”let me look at it.” After reading a few pages…”Not to worry, nothing PD about difficulty in comprehending article. Author seems to have mastered obscurity. He violates one of my cardinal rules of good writing, as cited by Robert Louis Stevenson…”Write so you cannot possibly be misunderstood.”

PV…”JV, don’t bother reading rest of article.”

One challenge of living with PD is a PDer never is sure if a feeling, a pain, a stiffness, a failure to grasp meaning, is part of PD’s downward spiral or a part of normal aging. How does a PDer fill out daily living score sheet? I suppose one key is to shrug it off, put those blinders on. Score sheet is looking backwards. PDers should be forward looking, stay positive. If you take care of yourself …exercise, rest, positive mood, healthy living and eating…you will help keep PD at bay.

I’ve long stated, when driving if you never take a left turn, you’ll live forever. Point is we should all be risk averse since we are fragile. PDers are no different. However, After seeing how JV has handled her PD, I would say PDers are tougher than most. Is this a love fest between JV and I? You bet your sweet bippy it is.

10/22 JV naps before meal and tennis exhibition. Nap? Not like JV.

10/25 JV complains of being fatigued. Explains her nap yesterday.

10/26 At Cancer Center (my appointment) JV becomes confused about what day it is. “I thought we at weekend already. What day is it?” “Monday.”

10/28 JV “Last night in bed I kept hearing voices. Was it your earphones?” (Radio wasn’t on). I wonder could this be start of hallucinations? Hopefully a 1 time occurrence. She was confused about week day yesterday.

10/31 I reflect back over last month. JV is doing very well. A vigorous walking swimming schedule often leaves her fatigued. Her back pain can really bother her.

11/4 JV stays home all day. “I’m not feeling well.” JV has been worried about upcoming river cruise. Not confident she will hold up on over night flight to Amsterdam, and touring after. “I regret now we committed to this trip. I hate to inconvenience Coleen and Jean. They were so nice to ask us to join them. Not confident about how I will feel or if my back gets so bad I can’t walk.”

PV…”I think it’s good for us we are going. We may not have many more chances for a trip like this. Let’s just go, and assume trip will go well. We will have control over how often we leave ship, and what we’ll do off board.”

Viking River Cruise11/5 to 11/16 Viking river boat cruise on Romantic Danube. Budapest to Nuremberg on Danube River with 3 day extension in Prague. JV did great. We walked on cobblestone streets 5 to 6 hours some days. JV worried about trip? I was the one who dragged. I was so proud of JV. After long touring day. JV would be stiff and sore, back kills. She never complained. Was up next day, and sometimes getting up was difficult, but we’d go to breakfast and she’d
be reviewing the upcoming program. She was always up front with tour guide, generally I was way back. We rarely went out after dark, but we’ve always gone to bed early.

In short, trip was a success. Should say trip back through Atlanta was a challenge for JV, standing and moving slowly through customs almost did her in. “I can’t’ do that again, almost ruined trip for me. I was so uncomfortable, and we could do nothing about it.”

For a few days after return to WTC we both experienced jet lag and being tired.

Rebecca11/21 4 days later Rebecca and family ate in for Thanksgiving. Hardly time to catch our breath.

They arrived at our place at 1:00 AM in a rented mini van, after flying in to Ft Myers from Fairfield CT. JV had gone to bed much earlier. I stayed up (read slept up). So good to see them.

11/24 JV…”I gained 3 lbs on our River Cruise. I want to take them off.”

PV…”You could use the extra weight.”

JV…”No, I like being thin. I think I feel better, can walk better, being lighter.

I end JV’s PD log with quotes from my journal’s gratitude section.

• I’m thankful for JV for her perseverance through adversity.

• I’m grateful that she stays upbeat, and is always thoughtful and helpful. Life path could be easier for her, and, without complaint, she’s accepted her rocky and hilly path.

• I enjoy having Becca and kids here. Now that I’m feeling better I enjoy their company, their sense of humor. Ana can be hysterical.

• I have desire to play tennis again, and I’m back in front of stove with apron on. I’ve always enjoyed creativity of cooking. Moreover, I relish the “pock” “pock” sound of tennis ball against strings.

• And last but not least, I’m journaling again.

In sum, JV’s theme song is “Gracias a la Vida”…thanks for life (Wikipedia.)

This inspiring song was composed in 1996 and first performed by Chilean musician Violeta Parra.

“The song is one of Parra’s most renowned and is performed throughout the world, and remains as one of the most covered Latin American songs in history. The song was inducted into the Latin Grammy Hall of Fame in 2013.[1]

Folk singer Joan Baez brought the song to the American audiences in 1974 when she included a cover of the song on her Spanish language album of the same name. It remains a concert staple of Baez’ to this day.”(Wikipedia)

I 1st heard about song on WNYC (NPR/BBC). Song was noteworthy because it was sung by Peruvian prisoners as a way to give them hope. “Gracias a la Vida” would be an appropriate theme song for most PDers, many of whom struggle with pain, depression and anxiety. We must never lose sight of “thank yous” for blessings, no matter how tough road is.

English translation is worth reading.

THANKS TO THE LIFE
Versions: #1#2#3

THANKS TO THE LIFE THAT HAS GIVEN ME SO MUCH
IT GAVE ME TWO BRIGHT STARS AND WHEN I OPEN THEN
I DISTINGUISH PERFECTLY THE BLACK FROM THE WHITE
AND IN the high sky its starred bottom
AND INTO THE CROWD THE MAN I LOVE

THANKS TO THE LIFE THAT HAS GIVEN ME SO MUCH
IT GAVE ME THE HEARING IN ALL ITS WIDE
IT RECORD NIGHT AND DAY, CRICKETS AND CANARIES
HAMMERS, TURBINES, BARRKS, AND SHOWERS
AND MY LOVER’S TENDER VOICE

THANKS TO THE LIFE THAT HAS GIVEN ME SO MUCH
IT GAVE ME THE SOUND AND THE ALPHABET
WITH IT THE WORDS I’M THINKING AND I DECLARING
MOTHER, FRIEND, BROTHER AND A LIGHT ILLUMINATING
THE WAY TO THE SOUL OF MY LOVER

THANKS TO THE LIFE THAT HAS ME SO MUCH
IT HAS GIVEN ME THE STRENGTH TO MY TIRED FEET
WITH THEM I WALKED CITIES AND PUDDLES
BEACHES AND DESSERTS, MOUNTAINS AND PLANES
AND YOUR HOUSE, YOUR STREET AND YOUR COURTYARD

THANKS TO THE LIFE THAT HAS GIVEN ME SO MUCH
I GAVE MY BEATING HEART
WHEN I LOOK THE FRUIT OF THE HUMANE BRAIN
WHEN I LOOK THE GOOD SO FAR FROM THE BAD
WHEN I LOOK INSIDE YOUR CLEAR EYES

THANKS TO THE LIFE THAT HAS GIVEN ME SO MUCH
IT GAVE THE LAUGHTER AND THE CRIYING
SO I CAN DISTINGUISH HAPPINESS FROM SADNESS
BOTH MATERIALS THAT FORMS MY SONG
AND YOUR SONG THAT IS MINE TOO
AND THE SONG OF ALL WHICH IS MY OWN SONG
THANKS TO THE LIFE THAT HAS GIVEN ME SO MUCH

JV’s Observations

As part of JV’s PD log, I would be remiss not to include her own observations about being a PD patient. Over breakfast on 1/4/16 I ask her leading questions.

PV…”How do you feel this morning?”

JV…”Not good, tired.  Last night after guests left I hardly had energy to put dishes away, although I did sleep well last night.  (I do wish you would interview me later in the day when I have lost nausea and look forward to lunch.  Mornings are tough!)

PV…”How do you feel now compared to a year ago?”

JV (After some thought.) Worse.  That’s how it’s been.  I never seem to feel good. Looking back several years, I recall feeling good, energetic. Now I struggle with general tiredness. I get more irritable now, more impatient.  My back  often pains me. This morning in bed I felt so sore, hard to roll over, get out of bed.”

PV…What did you think when Dr. Wey 1st said you had PD?”

JV…”I didn’t know what to think, although he gave me plenty of warning.  I was seeing him for almost a year before he gave me formal notice.  I knew his diagnosis was coming.”

PV…”After that office visit when he said, you have PD and prescribed Carbadoba/Levadopa, didn’t you feel some panic, some depression?”

JV (pause to think), “Maybe for a moment, it’s not like me to be depressed or to dwell on the negative. I can’t say I didn’t feel shocked at 1st, but after a couple of blinks I moved on. Like I said, I knew what was coming. I wasn’t surprised.”

PV…”Looking down the road, any thoughts.”

JV…”Hardest thing for me, is I had always imagined growing into a tough old lady, I’m now afraid I won’t get that chance.  (JV’s eyes tear up.) I adore quality time with my grandkids, I’ll hate PD if I’ll be shortchanged in this regard.  Also I have always been independent and full of energy.  Now I feel the need of a full time assistant to do what I used to do alone.”

PV…”How are you with meds?”

JV…”They make me nauseous.  I used to wake up every morning with coffee.  Now even thought of coffee makes me nauseous.  (JV puffs out her cheeks, feigns gagging.) I am on anti-nausea, and a muscle relaxer to help me sleep.  Both seem to work if I give them time.”

PV…”Tastebuds?”

JV…”Gone years ago.  I recall having trouble smelling/tasting food even when we were at mom’s over 10 years ago. For awhile I could taste salty foods, now I’ve lost that. PD has robbed me of many of my senses.”

PV…”Libido?”

JV…”Gone too.”

PV…”Do you think you’re exercising your brain enough?”

JV At the PoolJV…”You keep mentioning that.  (JV raises her voice…a touch of irritation.) I walk nearly everyday, swim several times a week. I could do without tennis.”

PV…”No. Tennis requires hand – eye coordination.  Your brain has to work during every stroke.  You should treat your brain as if it were a muscle that benefits from work; tennis is good for that.”

JV…”I do crosswords every day, although I now do easy one, and only Monday and Tuesday the LA Times one. I’m active in book club.  I read the books, taking the lead for latest book. I think my brain gets plenty of exercise.”

JV…”Listen, I’m playing doubles at 8:00, got to run.”

(JV is back from tennis in 2 hours.)

PV…”Well tell me everything. How’d tennis go?”

JV…”Excellent.  I was always on winning side. Felt good to play.  Still serving underhanded. My back, shoulders not strong enough for overhand serves. Weather was cooler today, and I move and play tennis better.  I have more trouble when it’s hot and humid. I can really slump in those conditions, can’t last.”

4 Comments

  1. PV and JV, an excellent picture of life with PD. Before, if we had a cold or the flu, or some sort of infection, we knew we could go to doctor, get treated and in a few days things would be better. We would carry on without a thought. The biggest consequence was using up a couple of days of sick leave. But PD is not that way. In some situations I find myself saying,”Well, it is not expected to get better,” and that’s a strange and discouraging realization. I totally get the idea that PDers feel robbed, because what did we do wrong? Bad diet, not enough exercise, exposure to toxins, viruses or bacteria? We have no idea. And as a result, it must be just as puzzling for researchers to get a handle on a cure if one doesn’t what the root cause. That’s a discouraging realization, too. So many discouraging aspects. It is enough to make you want to enjoy life, to eat out, to travel, to see friends and family, to even just think about things that give you pleasure and then go do them. And then afterward to spend a little time thinking, “That was good, I enjoyed that!” Gracias a la Vida!

  2. this is a great blog. I have so much respect for both of you. you make me feel like I can do anything, yet I know how much I fall, is dr. wey in naples I need to change dr.’s as my doc doesn’t really spend any time with me at all. I take 2&1/2 carbadopa/levodopa pills 4 times a day and I keep telling her that I don’t have any down time to speak of and I want to reduce the meds but she doesn’t listen to me. [

  3. We highly recommend Dr Wey at Physicians’ Regional Medical Center (PRMC). He’s competent, he listens, and he returns phone calls. We put a call into him asking for feedback on a question. He called 3 times over weekend, we just didn’t connect. We resolved issue during JV’s last office visit. I know Dr Wey is very busy, don’t if he’s able to take more PD patients, if you’re in or close to Naples FL, would be worth a phone call. We recommended Dr Wey to a friend with PD. She had one office visit and responded immediately. “I’m switching full time to Dr Wey. My other neurologist never spent time with me. Kept his distance. Dr Wey touched me, he looked at me. Thanks so much for your referral.”

  4. Hello, Vernon & JV, I read part of your blog, I said part because I have problems with my eyesight especially at night when I could barely see. I will have o see a neuro-opthalmologist. (An eye doctor whom specialize in eye problems common among people with neurological, problems like those with Parkinson). My neurologist told me that my eye problems is due to my PD.

    I did enjoy your blog. Have a good bonding (a Filipino term used when visiting relatives) with your relatives in the North.

    Dodong (Manuel Renomeron)