This is Last Post for Now
I’m a writer. I write at least 2 – 3 hours a day, and when I’m not writing I’m thinking about writing. Since retirement, most of my writing centers around my life, my family. I keep a personal journal.
This blog is about pathways of 2 progressive diseases…leukemia and Parkinson’s Disease. My leukemia came 1st and blog dealt with that 1st.
Leukemia treatment worked, and I’m now in remission (since 2012), don’t know for how long, perhaps 5, 10 years. My leukemia is incurable, while uncertain about when I’m pretty sure it will come back based on stats. Until then not much to say about me. I’m feeling well and doing well, back to my old self. That being said, blog turns attention to Parkinson’s Disease (PD) for foreseeable future.
Ever since JV was diagnosed with PD in 2013, I’ve been thinking and writing about PD, and reading about PD. I’m active in MyParkinson’sTeam social network, I have many PD FaceBook friends, would say, I’ve learned as much about PD from “listening” to what PDers say about their experiences with this “dread disease” than I’ve gleaned from PD articles and books.
Since JV has PD and, by definition in PD world (more like by default), I’m her “caretaker.” I’ve observed JV and her PD progression closely for 3 years. I’ve attended almost all of JV’s neurology appointments. I record what goes on. I bring questions to these appointments.
Those are my PD credentials, plus I’ve spent almost all my working career in health field in teaching and research (University of Pittsburgh, School of Public Health at State University of New York, Albany, internships for new MDs for Harvard Medical School), and conducting health services research and policy analysis for New York State Department of Health, Albany, New York.
At start should remind I don’t have PD, I can’t draw on personal experience. Some say if a family member or close friend has PD then everybody in group has PD. I disagree. I draw line there. I and anyone else in close circle can have no more then deep empathy and what we’ve learned from observing and reading.
I have leaned some things about PD, I write about them here, while avoiding speaking in PD-nese, i.e. PD agonist, dystonia, chorea, neurotransmitters, benign essential tremors, dyskenisia, DBS, and the like.
If someone were to ask me…can I live with my PD? Can I hold it at bay? Can I stop PD progression?
Answer is yes, yes, and, for the latter, maybe.
• PD is a question of matter over mind.
JV’s neurologist has described PD as a brain disease. However, in dealing with PD, last thing you want to worry about is your brain. Dealing with PD is not mind over matter, it’s the reverse…it’s matter over mind.
By this I mean (and I’ve seen this closely with JV), PDers regularly should carry out a series of continuous motion activities, such as walking, tennis, biking, boxing, ping pong, that only indirectly link to brain.
For example, JV has said…”When I’m walking I don’t feel my PD.” JV has learned that to reduce early morning nausea (caused I’m sure by her PD meds), she should take a long brisk walk with a walking partner. After, she feels more like eating, and her nausea is gone rest of day.
While keeping up with continuous physical side, PDers should exercise brain like it’s a muscle…crosswords, jigsaw puzzles, scrabble, chess.
• Exercise and healthy nutrition helps is a universal truth in PD.
In PD, not to mention life in general, fitness pays off big time. Exercise combined with good nutrition are useful tools in “winning” PD battle. For nutrition, PDers should eat less (50% to 75% of food on plate). JV does not agree with set %’s, but it is well known that Americans tend to eat too much. JV recommends simply taking smaller helpings. Eat more fruits, vegetables, nuts, avoid diet drinks, drink wine in moderation, and eat beans whenever possible. Eat carbos, but meat sparingly. Think “Blue Zone,” it works.
A caveat, PD is a high calorie disease with shakes and tremors as calorie burners. Thus, PDers tend to lose weight. In 3 years JV has lost 30 lbs. Add to calorie burner, bad taste in mouth and nausea which stifles eating desire, lbs can come off quickly and can be hard to put back on. PDers should be careful not to cut back on food amount to extent they lose too much weight.
This brings up a PD irony or “catch 22.” I tagged PD as a condition with excess baggage. Speaking of excess baggage, PD meds carry “tons” of them.
As is true for most potent meds, PD meds are associated with complications, contraindications. Meds to help control PD stiffness, shakes and tremors, can cause worse body movements depending how long a person has been on PD meds. These movements can be so severe that some PDers stay off these meds at start of PD treatment to keep med option open for as long as possible.
Moreover, stiffness, body freezing are PD symptoms, PD meds can help alleviate such symptoms but at expense of more movement, swaying, in long term. If given choice of controlling tremors or controlling stiffness, some PDers select stiffness and go med free. This is a Faustian bargain, a trade-off between having stiffness and freezing (potentially injury causing) or shakes and tremors (and perceived public humiliation). As mentioned above, some choose the latter.
I hate to give any credit to PD, but the fact that this brain disease encourages people to get off couch, turn off TV, and head toward bike path, gym or other physical activities is a nod toward positive.
• PD carries excess baggage, and this can be a hurdle.
PDers often feel weak, fatigued, sleepy, and this encourages a more sedentary life style, and this effort avoidance is tantamount to a kiss of death. PDers must resist inclination to stay in house, avoid people, not to walk, swim or eat healthy.
• Matter must win out over mind.
You have to be determined to do things, to be active, this will make you feel better, maybe even increase your longevity and healthy-life years, relatively speaking.
• Be socially active.
PDers should interact with family and friends, hang around people who make them laugh, go to parties.
Once PD resides in brain, PD becomes a devil’s advocate. When invited to a party, resident devil will say NO, better to stay in house, better to be alone so you can feel sorry for yourself. “Oh woe is me” is PD’s favorite mantra. In short brain resident is sowing seeds of depression. Will soon seem like PD “friend” is being paid commissions by big pharma so fistfuls of antidepressants and pain killers are purchased.
• Learn art of positive thinking.
Learn how to be grateful for life’s aspects, for family, friends for what you have around you. Keep a gratitude journal. Never give up hope.
• Every one’s PD is different.
Just like fingerprints are unique. What will help some may not help others. PD is a brain thing, and no one’s brain is like anyone else’s. Thus treatment plans must be custom made. And since PD generally is progressive, PDer reaction to PD also must be progressive, they must learn to evolve, to be on toes, to be vigilant. Hard? Yes, I never promised a rose garden.
• PD treatment has focused too much on symptoms and control and not enough on diagnosis and cure.
As a consequence, pinning down PD diagnosis starts late in PD time line. This is why most PDers are given notice in 50’s and 60’s even though PD would have been progressing for 10, 15 years before that.
Treatment effectiveness requires an early warning and close following at PD start…the earlier, the better. Smell loss is one of these early warnings. JV complained about losing her “smeller” 15 to 20 years ago. No one warned her that the family farm put her at risk. At that time we didn’t suspect that smelling/tasting loss was like a PD canary, an early warning.
I’m pretty sure JV contracted PD from being born and raised on a working farm and being exposed to pesticides, herbicides. Research has found that even ambient exposure to farm chemicals can lead to PD.
• PD cases should be under care of PD experienced neurologist or practitioner.
A qualified neurologist, practitioner would be up on research findings, results of clinical trials, new PD meds, and new/innovative treatment options, and, if deemed appropriate, be able to refer PD patients to physical trainers, nutritionists, speech therapists, social workers and psychologists.
• PDers should participate in family and other support groups.
Whenever possible PDers should never hesitate to ask for help from family and friends, be active in social networks and support groups. They should never be ashamed to say they have PD. People are curious, truth is better than speculation about shakes, tremors.
Summary and Wrap Up
(Parkingson’s Disease Foundation for stats)
“As many as 1,000,000 Americans live with Parkinson’s disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease.
Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year, and this number does not reflect the ‘000s of cases that go undetected.
An estimated 7 to 10 million people worldwide are living with Parkinson’s disease.
Incidence of Parkinson’s increases with age, and only an estimated 4% percent of people with PD are diagnosed before the age of 50.
Men are 1½ times more likely to have Parkinson’s than women.
What Does Parkinson’s Cost?
In the United States, combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income from inability to work, is estimated to be nearly $25 billion per year.
Medication costs for an individual person with PD average $2,500 a year, and therapeutic surgery can cost up to $100,000 dollars per patient.”
In closing let me remind us that life itself is progressive, you don’t grow younger as you age. Going to bed with a “problem,” and waking up with it, is an “age-old” problem (sorry about pun).
PDers need to be careful not to take “extra credit” in progressionism (is that a word?) because they’re stuck with PD.
I have incurable leukemia, in remission yes, but I know it will pay me another visit.
I’m JV’s “caregiver,” (diagnosed with PD in 2013), although in some respects she is better off than I am (now I’m taking extra credit), she sleeps at night, I don’t. She has more energy than I have. I can beat her in tennis, but not long ago she could’ve beaten me.
Where am I going with this?
To remind PDers we all have problems of some sort. What we have control of is being grateful for our blessings, no matter how “tough” life is. And PDers are not unique.