I wrote this piece as I was going through my first year after full diagnosis. My newly diagnosed mentees seem to find it a helpful touchstone and have shared it with their families. And there is an MD in KY that uses it for her new patients. I’m so gratified that it seems to support so many people.
Some of the reactions are too hot. You are now the illness. Nothing you have done or will ever do will ever count again. You are now to be pitied.
Some are too cold, “That’s nothing. I know someone who just takes a pill and everything is great.”
One will look at you like it’s your fault.
Another will offer some ridiculous story of cures, that they know nothing about.
Some act like it is contagious, or fear of their own abyss that comes for all of us…eventually.
And then there is just right. Example: “That sucks!” (or as I would prefer to say, fucked) “Tell me anything you want to. I am part of this new normal with you. Now let’s get a drink.”
Because it does suck and it is fucked. There are no sugar-coatings for certain things in life. No one facing great loss wants to hear it will get better. Everyone who has experienced this kind of loss deep down might know that the intensity of the pain will eventually dull to an acceptable daily level, and life can go on. But, no one needs you to give them a time table. Sometimes someone deserves to float in the suck pool for a while, without well-meaning arms dragging them out before she is ready. The friends that matter swim by her side. She will get out when she is finally tired of skin pruning. And then her friends will be patting her back with a towel waiting for the sun.
Cancer is a tricky one. When I was a child it was still whispered and called the C-word. Almost everyone died. Cancer sucks. But, thanks to science, we have amazing breakthroughs and many, many cures. Multitudes of people have a terrible year or so of treatment and go on to live long, happy lives. Early detection is often the key, yet I know two people with stage 4 of different cancers that have been given no life expiration date, yet. So, stories of others’ survival might be an added prescription to the friendship list. By-the-way, people still die too soon and cancer is fucked.
There is a ladder of suckiness to degenerative brain diseases correlating with the age of diagnosis. Someone diagnosed at age 30 is a different reality to someone diagnosed at 90.
I have recently been diagnosed a bit past the middle of the two.
Parkinson’s disease is like standing in the wind trying to hold your feet on the ground. The disease never takes a day off, so you can’t. There are no periods of remission. It is a comprehensive disease that attacks multiple parts of your existence and it is a slow-moving avalanche into a probable but unknown valley. Your body is now a chemistry lab for what combination of prescriptions, herbs, diet, massage, acupuncture, marijuana and exercise that will hold down the increasing gales and get you through the day.
You add PD to your professional and personal schedule. Every time you walk up or down a flight of stairs you include an exercise for balance. Swing your arms wide each step to prolong your ability to keep swinging them at all and open your walking stride to prolong an inevitable shuffle. Do your standing balance exercises every day. Do your cognitive exercises every day. Do your cognitive exercises while you are doing your balance exercises. Strenuous aerobics at least five, preferably seven times a week. Yoga, boxing, weights to hype up that dopamine, and meditation to cool you down.
Can you have self-pity and perspective at the same time? I am not 30 or 45. But I’m also not 80 or 90. I am one of those annoying, ageless, highly educated, in great health, Baby Boomers that has barely conceded to middle age. Silly me.
Every day is also the inventory of symptoms. How is my walk, today? The arc of the swing of my arm? Are my wrists hurting? Am I stiffer? Do I need to lift my weak leg to get into the car? When something goes down the wrong pipe, am I losing my swallow ability? Every forgetful moment is a question of cognitive regression. How was my bowel movement? Urination? Mood? Skin? And the tremor or tremors, which you track throughout the day.
Not matching with any clinical drug trials, I participate in surveys for research studies that I am matched to. I answer lists of questions about every function of my body and emotion life. As I said, I am in early stages, so most of my answers are in the happy range, I just gaze onto what will be coming. Stress exacerbates any tremors. So does anxiety. I get stoned when I’m done. Kills two birds with one stoned.
Though no one has completely nailed down the all causes or combination of causes of Parkinson’s, I have two defective genes. The GBA gene that seems to raise a person’s risk about 10%, and the LRRK2 gene which apparently raised my own risk to approximately 85%. My Ashkenazi roots gave me my cunning wit, and this LRRK2 gene. Uncountably grateful, my son did not get this LRRK2 gene nor did my brother so this genetic mutation in our core family ends with me.
There is a saying, you don’t die of Parkinson’s, you live with it. LOL. What quality of life is the question. And, there are complications that can kill you. I have no idea how long it will be until the quality of my life will be completely diminished. The doctor said that on average after the next five years, maybe 10 if you’re lucky, it doesn’t look bright. But, I also know it is not the vicious killer, pancreatic cancer, nor am I a young person that has a whole life completely detoured. My child has grown well and happy. My marriage is strong. But the rest of my life is…the rest of my life.
Life and work have me living across the country from most of my family and closest friends. So, I have no real community. Diagnosing PD is sometimes a process. During the past year of tests, I met two women with PD. They were both extremely angry and bitter. And weirdly, both had really badly dyed hair. Also, both invited me to join the women’s support group. They cannot be my community. I watched a physical therapy boxing class known as Rock Steady Boxing, that has become quite the rage in the PD community. I knew instantly I would have nothing in common with them, either. I am joining a PD workshop for newly diagnosed to find a peer community. And to learn how to have PD. But, I think it is self-taught.
Sounding a Bell
I have a loud enough personality cover so that most people don’t know how quiet I am about many things. This past summer it shocked a lot of people when I told them I was having major back surgery. They knew my back had been hurting, I told them about it, but not every day and in minute detail. It seems necessary for some people to report/vent about their health and convey every detail of every medical report. This week I heard about my friend’s ear ache, another’s lingering cold, knee pain, cough, sciatica, a small skin cancer removed, and lest not forget a report on someone’s bowel movements. I think we try to compete for two reasons, my pain will commiserate with yours or my sufferings is as bad (if not worse) than yours. “You think that is bad, well just listen to this…!” My mother’s worth was as much as she suffered. I learned then finally unlearned that behavior a long, long time ago. When you are quiet about these things and so loud about others, most people don’t notice your lack of complaining. I prefer to feel indestructible, invulnerable. I prefer to be thought of the same way. I don’t want to feel anything less.
The book My Mother, Myself was published in 1977. I didn’t get past the first page. Fear. I have lived my entire life not wanting to be like my mother. There seems to be so many women of her generation, and others, that underneath it all, felt unrequited. The wife/mother path was the goal. Who their husband was, was pretty much who they were. Except for the exceptional, a step above layer of intelligence and fate. Teachers, nurses, office clerks, waitresses “had” to work to support the family. Many, like my mother, had short secretarial careers until they were able to be a professional wife and mother.
My parents didn’t send me to college or notice that I was flunking out of high school, for that matter. They were very concerned with my brother being able to stay in school and out of the draft. He was male. His Bar Mitzvah was important. He was male. His braces. His future. I had ballet classes and some acting classes, but I was going to get married, some day. Dropping in and out of a community college was fine with them.
The late 60’s early 70’s did shake up their notion of me, a bit. I lived with someone when the standard thing was to move out and fake a “roommate.” Let me just say that shit hitting a fan was prettier than the reaction at my house. When I did move back home (to which I was easily welcomed) and a year later announced I was going to UCLA, it was a shock to them.
Some people come into your life at just the right time. I now had a very traditional boyfriend who encouraged me to pull my classes together and transfer. Thank you, Harvey. I could live at home, but since I had already been independent (i.e. wasn’t a virgin), most of my other expenses were up to me. We got married during my senior year. Though my wanting to go to graduate school after graduation had me leaving Harvey. He also had bought a roast…for me to cook. My mother cooked roasts. His mother cooked roasts. I didn’t even eat red meat. People leave your life at just the right time, too.
My father might have been much different without a very high maintenance wife. So many stories, so little time. When my father’s friend heard I was going to grad school, he announced that I would be the very best educated house wife in the San Fernando Valley. My dad shot him down.
Sexism is far from eradicated. But, I am of the first generation that was told that we could go to law school or medical school without being a complete exception. I chose to get an MFA in Acting. So practical.
Even though later I did marry and have a kid, when I was driving an equipment van home from a shoot at two in the morning, I smiled. My life was not like my mother’s.
The Red Carpet
I listen to celebrities’ PD “coming out” and talk about how their lives are still quite wonderful. Though this varies, three and a half years into diagnosis seems to be the marker of confession.
A few artists have gone home. Their absolute right; Linda Ronstadt and Neil Diamond come to mind. Alan Alda just came out as did the Democratic leader Ed Rendell. The list of famous and infamous people who have lived and died with PD is long, happily, many have been stricken closer to the end of the age road. But most, like me, the beginning of the final third.
Of course, leading the pack is the truly great and heroic, Michael J. Fox. He was 29 when diagnosed. Then, after many years in the PD closet, he couldn’t cover it anymore. It must have been completely exhausting both physically and emotionally. Instead of continuing to hide, he shined a thousand-watt spotlight on himself and the disease raising multi-millions of dollars and populous awareness. PD patients have the possibility of a different future because of him. How wonderful that his life can have that much meaning. I wish I could find a new meaning.
I’ve spent my life working in the performing arts of one form or another. Acting, writing, directing, producing. Even accredited by the California Bar Association to teach attorneys communication skills. A worker-bee or blue-collar showbiz person. The last couple of decades mostly in academia, which included constant mentoring. I stopped teaching this year for various good reasons only partially having to do with Parkinson’s. I thought I would be writing again or another story telling adventure, maybe go back to stage work. In fact, I was doing a short play when my left-hand tremor just started to appear. I couldn’t understand how I could be nervous on just one side. I wasn’t nervous. Any energy bursts or stressors, from fear to fantastic, exenterates a tremor.
I can’t find inspiration or aspiration. Though I have volunteered in politics most of my life, knocked on a whole lot of doors and such, I’ve been searching for volunteer work to use more of my skill set. Haven’t found more than greeting guests and answering phones for a pledge drive, when they need me. To paraphrase the incomparable Neil Simon, I was never a watcher, I was a doer. I’m too much a sitter at the moment. I have acted, build several theatre programs, co-developed a student film festival, directed, won a writing fellowship and screenwriting awards, I even wrote a book that was published by a major academic press. But nothing that raised me to notice so that I now have some after-career. I thought I would at least be that little old lady working until well into my eighties or more, till I am one of the extras in the third remake of The Golden Girls. I’m not Alan Alda, no one will be accommodating me and putting me back on stage, including me.
Box, Dance, Express
Why I don’t look like a chiseled goddess is beyond me. I have almost always kept a reasonable weight through healthy eating and exercise. But, now the gym is my new office and exercise my new profession. I do heavy aerobic at least six days a week totally between 6 and 7 hours with my heart rate at 85%. Every week I am rated in the top five on my gym’s stair master. Yippee. On average I also take a yoga class, two boxing classes and two movement/weight training classes. One of my boxing classes is this Rock Steady Boxing. Boxing for PD. Not the class I mentioned above, but I cleared to be in the more active class. One of my classmates was diagnosed 10 years ago, if I’m still in a shape as good as he seems to be in a decade, things won’t be as bad as it might. He told me that his medication helps a lot. Except for the gambling problem. Seems a common side effect is impulse control and compulsive behavior. It’s the medication that my neurologist thinks will be best for me. When I am ready. Hell, I already walk around biting my tongue fighting for verbal impulse control. I am not ready for any of this.
I am taking a PD dance class tomorrow. Insert joke here. Telling one of my most witty friends she got dead silent then declared that I have to make some jokes already before she exploded. All I know is that if I show up and feel like I am in a senior home, it will be my last PD dance class I take for some time.
It is the last PD dance class I will take for some time.
Important note to PD professionals. Put people together in groups of physical peers.
I went to the class with my new PD colleague. We met Sunday in the How to Have PD Workshop meet and greet. PDSelf. PDSelf was developed about nine years ago by a woman who was frustrated by the instructions given to her by her doctor at diagnosis. It’s pretty typical. In the group we compared notes. It goes something like this. “You have Parkinson’s disease, here is a prescription. See me again in six months.” My doctor did discuss exercise and I got a red binder with labeled dividers that held no information. Zero, zip, goose egg. Someone apparently made a mistake. But when I got home and opened it to find it empty is when I cried. A metaphor? I think of it as a party favor.
I’m on month four since the official diagnosis. I have heard that some doctors are more involved, but it is the minority. Though I have only seen my PD neurologist once, I did like him, and he is extremely responsive with email and doesn’t communicate with you like you are an idiot.
So, PDSelf is a once-a-month program for the next eight months designed for the newly diagnosed and their caregivers. Caregivers. What a terrible word to hear for the newly diagnosed, stage-one person. How about partner, or support person. I just hosted a holiday dinner for a house full, who the fuck needs a caregiver? Again, I went apprehensive that I would feel like a fish flopping in the middle of tea party. But, I didn’t. I was with peers. A perfect definition of a love/hate relationship. Great to meet these folks but shitty to have to be there at all.
I say I’m on month four from diagnosis. But, it’s not like measles that shows up one day. It is more like at least a couple of years or a decade of growing sniffles until you come down with a permanent cold. There is a different progression of PD for every person who has it. The PDSelf leader compared us to snowflakes. I have not yet met anyone who’s symptoms followed the exact course as mine. Where you tremor, if you tremor. Balance problems on the left or right, if you have balance issues. Weakness in leg or wrist. When fatigue hits, if fatigue hits. Cramps or not. Stiffness or not. Pain or not. Vocal problems or not. Swallowing difficulties. Cognitive retardation, or not. Face freeze…step freeze…frozen shoulders…lack of smell…lack of taste… Until it coagulates into everything. That sliding schedule is also a unique mystery for every patient. PD effects every part of your being. The outward affectations are just the manifestation of the inward destruction of your dopamine. Your dying brain.
Mine supposedly started a little over a year ago with an ever so slight tremor in my left hand in the evening when we were watching TV. About a month before I did that little show. It was more constant when I went to neurologist #1 a couple of months later. MRI scan. No strokes, tumors or MS. I was rooting for a small benign tumor. The kind of high drama and full recovery. Nope. Neurologist #2 discussed essential hand tremors that do not lead to any other infirmary. Wait and see. Seven months down the road I failed enough tests that PD was unofficially diagnosed, with a definitive diagnosis declared two months later with my now Movement Disorder Specialist, Neurologist.
But, I’m sure my sniffles started years before. Losing notes in my once powerful singing voice that the nose and throat doctor said was probably from a virus. In yoga I noticed my balance wasn’t as strong on my left side and my left leg wasn’t really kicking when I was swimming. First, I’m not getting any younger and my back problems were worsening. The orthopedist and I assumed that the leg and balance were connected to my lumbar problems. But, remembering a year or so before that, I would occasionally catch my left foot when I walked that I attributed it to rubber soles and being careless. No one added it up to the big sneeze that was coming.
But, the hand tremor sent my back-orthopedist trembling. THAT wasn’t connected to my L4 and 5 lumbar. Hence my neurologist journey.
Most of the colleagues I meet start taking traditional medication, immediately. I have two friends that don’t. Nor do I. Not yet.
These aren’t easy drugs. Neurologist #2 had me go on Sinemet, one of the most common PD drugs, as a test. If the shakes stop, it’s a diagnosis. But three pills in, the drugs made me quite sick. Apparently, not uncommon. Sinemet is a form of Levodopa, and all of them can cause a host of side-effects, including the compulsive behavior pill. And others to help control the side-effects. It’s ficken’ hard to recreate dopamine in the brain. I’m terrorized by the medication.
“Exercise is the best medicine” might hold true for PD. Antidotally, the aerobic exercise at 85% for 30 minutes 7 times a week, delays symptom advancement. And the boxing, yoga et al, keeps your functions as sharp and supple as possible. My routine got awes at PDSelf. It’s true that I am driven. Driven by pure fear. Driven by the fantasy that if I keep moving, it won’t catch me. Where is the lemonade of the goddess bod?
Chinese herbs seem to help me temper tremor extreme. But, also hard on the stomach. So, they must also be tempered.
Some extra vitamins.
My early years saw a lot of pot. Got socially stoned plenty from 16 through my 20’s. In my 30’s, still on occasion. For parenthood, straight as an arrow. But, I have to admit that with empty nest, some occasional vaping.
Now I am legal. I live in a newly medical marijuanaized state. PD qualifies me for my marijuana ID card. And it helps. Frequently, somewhere between 3:00 and 5:00 pm, an inner tremor and physical/emotional anxiety come on. The marijuana calms all my layers to a varying degree.
But, working on the dosage is trial and stoner. Marijuana has lots of chemicals. But the big two are CBD and THC. The THC makes you stoned. The CBD has the medicinal qualities. Why not just take CBD? To work effectively, the CBD often needs a pinch of THC or more.
I am a cheap date. A light weight. Always have been. One glass of wine works like three in me. The same goes for a hit. My intergraded medical doctor suggested I try a CBD/THC a ratio of five to one. On a particularly early tremor day, I popped my very first gel cap at 9 am and went to the gym.
Edibles take an hour or an hour and a half to take effect. My 45 minutes of stair master was champion. But, two minutes into my movement class I left. I was ripped and I stayed absolutely ripped for the rest of the day. Funny? Yes, it was. Once. But I am also not a day drinker, or stoner. And to make matters worse, it gave me the munchies.
Now, I take a 10/1 ratio on days at zero hour, which is starting earlier in the afternoon. It’s a one glass of wine at best in the non-light weight world. And less munchies. Writing this, I have only eaten three large carrots. I often supplement it with another dose later in the day. Bedtime I take a reverse ratio dose for sleep.
I have very complex feelings about being a little stoned every night. It doesn’t seem to interfere with my traditional evenings of fixing some dinner and our junk TV. Or going out to dinner with friends. It’s not that my husband and I haven’t have a glass of wine some evenings. Especially in the past couple of years of some extra change and stress. But enjoying a buzz and needing a buzz are two different things.
I’m very grateful to temporarily lessen the symptoms, but it doesn’t take PD away. It is a progressive disease, then again, so is life.
Many of my PD “medicated” friends also do a combo of things. Massage, shiatsu, a concoction of drugs. Someone takes a small dose of L-dopa with a daily 8/1 ratio of CBD/THC every day, and takes a 1/1 in the evening. She doesn’t feel guilty, why do I?
Going into PDSelf you will hear various a lot of grey-haired aged people discussing marijuana. Even the ones that go to church every Sunday and never indulged in their youths. Apparently, I am an early adopter, so I get asked a lot of questions.
Those in the know are waiting for a rumored new strain of pot called THCV. It is supposed to actually suppress appetite, which will make some people very, very happy and make a lot of other people very, very happy with all the money it will make. But, this slimming miracle is also supposed to be excellent for PD. I will wait on line like for a rock concert or Black Friday sales. Neither of which I have ever done.
I know I have first world Parkinson’s. I now have Medicare and can afford full supplemental insurance. I can pay for my gym and extra classes. And I no longer have to push through a nine to five job or get kids off to school. So, if I need to rest, I can. Can you feel fortunate and feel sorry for yourself?
There has never been a time in my life when I didn’t have a project, until now. Like I said, I stopped teaching for the right reasons. I’ve had to reinvent my life several times, like many of us who are the worker-bee performers and artists. But, if I was still teaching I would still feel I had purpose and a schedule. Purpose for me is not spending my day just taking care of myself. I need to find a way to use my skills. I need something to land in my lap. It’s not the work that seems exhausting, it’s the search.
But, I now have parameters. I don’t want to work at night, any more. Hell, I didn’t watch television for over twenty years working in theatre. Now I can’t wait for the next limited series. Like so many of us, I used to be an owl, but I am now a lark. Except, for each minute I go to sleep before 11:00, I can subtract it from my 5:00 internal alarm, if I make it that long. Now, usually in bed by 10, wake up at 12:30, then again around 1:30 and 3 then the 5 a.m. rooster crows. I have fragmented sleep. Sleeping difficulties and fatigue are big in the PD world.
One of the symptoms (which I don’t have) of PD is having unusually vivid and often physical dreams. Dreams where you actively act out. I have always had an abundance of wild and crazy dreams, unusually remembering five or six dreams a night. I was diagnosed years ago that I didn’t have efficient deep sleep. A prescription has helped curb the problem. But, no physical tossing and turning. The bed looks practically made when I get up in the morning.
In fact, I dreamt all day, too. Fantasizing. All through grade school in San Antonio, Texas I was imagining my life at a boarding school in Switzerland. There were fully realized daily schedules. There were roommates. I had floor plans of my room and all the school buildings. I had other scenarios, but the going to my European school went on for years. I mapped out other parallel lives most of my life. Some of my imaginings ended up in stories I’ve written or part of characters I played on stage. In my forties it was shocking to discover that everyone didn’t live this way. Though my parallel lives dwindled a little more with each decade, they were still there like warm, old friendships. Sometimes just lullabies to go to sleep with every night. I don’t day dream anymore. I guess PD has finally made me grow up.
It’s not like I’ve never been sick or had injuries. From something as jolting as a serious cancer scare when I was 27, to a few tough car accidents, a couple of breaks and sprains, back surgery, etc., even being almost electrocuted when I was six. Seriously, a big deal. But, everything I could recover from, including new front teeth. One of my new PD colleagues went through breast cancer 12 years ago in her forties. Young and scary. She was open about it to everyone. She fought, fought hard, and won. Three years in, she has told almost no one about the PD. She doesn’t know why. I do. And we both agree, even with all these conflicting feelings, there really is an abyss, there is no winning. We don’t quite know what we want from others, but it isn’t a pity party.
And here I am writing one. Oy vey!
So, here’s the rub: are my symptoms progressing slower or is this progression my snow flake self? I am one of the tops of the class in PD boxing. Is that because working out was not new to me before diagnosis or has the acceleration of exercise helped? Yet, the progression does continue.
The PD boxing class is really too light weight for me, probably because of the varying degrees of symptoms in the class the therapist has to teach to a certain level. Last week was better, a lot of different agility drills. This week felt like back to the beginning. Do I dump it until I need it more? Or is that my personal denial and feeling of superiority over my clod along classmates? I still seem to be keeping up with the regular kickboxing classes at my gym.
Funny, I have never had a group of friends living here. Work was always too far away and we lived where it was conducive for my husband’s work and my son’s upbringing. Amazing public schools, and all that. Not so good for me. Never fit in. I’m not a golf/tennis/country club /church kind of gal. For two decades I woke up hating a little of every day. Living there was like the Hilton version of the Shawshank Redemption.
Kid grown, stopped teaching, stopped commuting 100 miles every day during the academic year, we escaped to an artsy city neighborhood where I feel I belong, and where I am becoming part of the community. The gym, pottery class, and the PD community. One reason I stay in the PD Boxing class is for peers. Oh, and we got a much more challenging boxing instructor.
There are so many decisions with this thing. What classes are best? What aerobics? How much to exercise or is there a maximum where benefits level off and all the rest is for a pipe dream of more wellness and makes me tired? And where is that line? No answers, just questions. After all exercise benefits are antidotally based.
Oregon Or Bust
Suicide. Not now, silly. Maybe never. I am definitely not suicidal. But, as I lose control of my life, I can’t but help consider there might be a time when I will want the ultimate control of my life back. Knowing I could, one day, in a galaxy far, far and away, gives me great comfort.
Watching my very elderly aunt and a few friends’ parents struggle and decline, I’m not sure I’d feel any different with the similar discrepancy of very old age. I truly feel, sometimes it comes to a time go defy Dylan Thomas and we should go gentle into that good night.
My mother had had three heart attacks by the time she was my age and vascular dementia by 70. My dad died three years older than I am now from complications of by-pass surgery. But, my mother smoked until after heart attack number two, and my dad thought pastrami sandwiches and blueberry pie were food groups, and exercise was the remote control. I thought I would beat them. We’ll see.
I don’t believe in God. I’m an atheist. I believe in the big bang theory, and if there is something beyond that, I will be happy to admit that I am wrong. I do believe that we are all part of this earth. Which we folks seem to be fuckin up, royally, BTW.
Years ago, on some car trip with our pre-teen son in the back seat, my husband randomly announced that he wants to be cremated. “Can we pull over, first?” I asked. The time and place of his pronouncement has become part of our family comedic lore. But, actually it’s okay to say where or how you want to be laid to rest or deposed of. Even though you are now dead, it seems important these wishes are respected.
The idea of being mausoleumized in some box creeps me out. Going to ashes is bad for the environment. I don’t want my legacy to be more air pollution. Some 10 years ago I decided that I want a green funeral back home, in California. It will be a mad rush, and probably expensive to have it done, as morticians don’t pump your bodies with poisonous chemicals so they have to get you in the ground, fast. You are sent back to the earth to biodegrade. It would be nice if they planted a tree on top of me. A redwood, so I have staying power, and I’m finally tall.
You think about these things with a degenerative brain disease. I imagine you think of these things with stage four cancer, too. What I am grateful for is that I am thinking of these things in the last third, and not thinking of these things for a child.
Then there is Steve. I saw Steve last week in my PD boing class and ran into him in our gym this morning. He is probably in his mid to late 70’s and three years into diagnosis. His is the attitude I fake. His is the attitude I aspire to. Remember what I first wrote about the best way to talk to sick people? Well, I have this fucking thing, I’m going to do everything I can do, now let’s continue living.
No tremor, though he has balance problems, etc., he is three years in and not taking medication. He feels the same as I do. Every day I don’t take them is a day free of their side-effects, is a day that they won’t lose efficacy when I decide I need them. Because that is a problem with the drugs. They have a time limit of effective use. They don’t cure PD, they help live with the symptoms. Don’t get me wrong, this is uncountably valuable to living a best life. But why take them for some nagging things. They do not stop the progression, they do not help with the fatigue, and the common side-effects can exasperate PD stomach and digestion problems amongst so many other things. (Remember the gambling?) Then you take other medicine to try to temper that. And they up the medicine which goes hand-in-hand with more side effects. Repeat cycle. My symptoms are all on my left side. Yes, it would be different if I was left handed. See, grateful.
Steve asked me about marijuana, today. Everyone succumbs, eventually.
I had to fill out a survey regarding my back surgery at my check-up, today. One of the first questions is, “O a scale of 0 to 100%, how is your overall health?”
How is my overall heath? It’s excellent. A little thyroid medicine, and stuff for sleeping, but enviable blood pressure and decent cholesterol with a heart calcium count of zero. So, excellent, but for a touch of Parkinson’s. How much does this reduce my health percentage?
- Do not let myself get this tired. Naps are a good thing. Naps are a good thing.
- “I know your troubles are greater than mine, but mine are happening to me. (Don’t know why I put the quote here, and I have no idea who said it, but it’s one of my favorites.)
Idiots’ Delight or Stupid Pet Tricks
In PD class we discussed the stupid things people say when you tell them you have been diagnosed. These are real stories:
My cousin, from a side of the family I have never really known, felt terrible and shared with me that our aunt had PD suffered horribly and spent the last 20 years of her life in absolute misery.
A “friend” told someone in group not to worry because most people with PD didn’t live past 70. She is 62.
Someone got a “supportive” message on Facebook. “You will beat this!” No, no he won’t.
When I told a friend, she shared with me the amazing coincidence that her 86-year-old friend, long needing to live in assisted living, was just diagnosed, too!
Another cousin calls to check up on me always with, ”Helloooo Suuusan. I am praaaaying for you. How aaaare you?” Not dead, yet.
My friends sometime mention someone they know with PD, but it always seems to be someone diagnosis in their 80’s. Not that there is a good age to get this kind of news, they don’t seem to get the sliding scale. They don’t understand that finding out you have PD at 85, and three years later have fairly advanced symptoms is not what someone 20 years younger wants to hear. I respect the challenges that my 45-year old boxing colleague has that are different than mine.
I need a place in the world beyond Parkinson’s. Today I got to “coach” another woman with PD. Can that be my calling? A PD peer counselor?
Today, I can barely move from the couch, but probably a reaction to a shingles vaccine. The fear is not the one day, the fear is whether this will be there tomorrow, then the next.
But, the coaching helped me. She said I inspired her. So, how can I not go to the gym? Dragged myself there. Then back to the couch. Did start reading a new book. About a woman with agoraphobia. Somehow fitting for today.
Is Existence Enough?
I feel done. Performing since I was four, I did every school production. My only two weeks at summer camp was me writing camp parodies. Professional theatre at age 12. Bussing to rehearsals on the the seedy side of Hollywood when I was 14. Anti-war street theatre. Grad school. Silly jobs of bits on Soap Operas, and running Gong Show acts. Commercials and industrials. Teaching and creating an adult student theatre company where the proceeds were donated to charity. Writing. Winning some cool awards. Short films. Academia. That book I wrote. Yet, with all that looks like on paper, it was all gone as soon as it ended. Not a career that continues on with me. Now, nothing. The effort of striving for something, the next thing is overwhelming. I’m tired. I’m done.
A Group of One’s Own
When I was 16 or 17 I painted a picture of three apples. On the right side of the right foreground I painted a bite taken out of one. The other two apples were slightly more in the background on the left. I gave the painting to my councilor, Mr. Berg, who was my sanity touchstone during my last year of high school. Mr. Berg reported to me that the art teacher had complimented the perfection of piece that was now hanging on his wall. But, that apparently the bite was painted on the wrong side. That the “bite” should have been placed on the left/center on the apple facing the other apples. And that’s how he thought of me, that I was perfect, I might not know it, but I would always beat to my own drummer. It was the nicest thing anyone has ever said to me.
But it’s also been a bit lonely on the wrong side of the apple. There are many instances when I haven’t been more than the outside edge of a group. Maybe it stemmed from being the only Jewish kid in my class in 1950’s Texas. Maybe it was my complex, unhappy mother. Maybe just my lot in life. I guess we’ll see where I fit in this new PD world.
I know that my PD boxing class once-a-week and monthly PDSelf makes me feel like I have a safe harbor. I imagine it is rather like an alcoholic who hangs their life between AA meetings. I was invited to go to what might be an appropriate peer support group this Saturday. I will go…in search.
The Tremor Slide
Six months since the official diagnosis, a year and a half since knowing. We all know our exact date. The left-hand tremor is more severe and starting earlier and earlier in the day needing an earlier and stronger dose of CBD/THC, weed. Big step, I just emailed my MD for a prescription. A mild dose but I feel like it is such a defeat. Sometimes I just want to go home, too.
A week later, I have filled the prescription, but not yet taken it. My dose of marijuana is now ratio 5/1. So, I’m a bit stoned in the late afternoon. We’ll see.
I do wonder how long I have actually had PD. The sniffles I talked about. Since I have this genetic time bomb, I want them to study me much harder. Were there little symptoms very early in life? The loss of my middle range in my singing voice some years ago. The weird sleeping thing for many years. My mild dyslexia blamed for my always challenge at choreography no matter how well my bar work was. Maybe I was born with this and it has been kept at bay by a myriad of actions. Maybe it was tripped by the lead and pesticides all we baby boomers were brought up around?
Apparently, this is a real thing. Groups around the country of people with PD who form a chorus. Why? Because PD often and will affect your voice. A dedicated PD caregiver found funding and formed a group here around four years ago. I was afraid that it was going to be a repeat of the dance class. But, it wasn’t. Very nice people. And I went for several weeks. But, I can’t do the concert with them. There is something wrong to my artistic sensibilities and dignity of a lot of older, mostly white with varying levels of infirmary standing (mostly) and signing the Banana Boat song. You know the one, a young Harry Belafonte, “Dao, Dao…daylight come and me want to go home.” Not sure even my union minimum salary would get me up there. And this from a woman who got paid for doing Nip and Tuck Libinsky, Siamese Tap Dancers Attached at the Butt on the Gong Show that won most outrageous of the week.
I’ve decided not to go back to Parkinsingers. I applaud them. I support them. I can’t be them.
But, a pearl of wisdom did come from attending. A retired therapist PD spouse reminded me that with research (thank you Mr. Fox and fabulous researchers) I don’t know how I will be in five or 10 years. An abyss, but an abyss with some hope, maybe. Depends how fast I can run ahead of this thing.
It Takes a Village
I do have a team, now. The easily to reach PD MD. My second visit with him is next month. A therapist, not for childhood analysis, but as an objective sounding board. And my PD boxing teacher/physical therapist, who will help me chart my growing symptoms every four months and make suggestions. Supportive friends, near and far. Though no one knows what to ask or say.
And yes, an incredibly nurturing and loving husband. But as my therapist puts it, I have always been the glue in our family. The fixer. The rock of logic. I’m not sure we can reverse this. There are many reasons I write this that I don’t care to disclose. But, it’s true.
Our once incredibly close son seems to be more absent than we had hoped in this new road. My husband thinks it might be that he is shaken by my new vulnerability. I’m not so sure. We celebrate the amazing life he is forging for himself, but wish he had not flown so far away. Metaphorically. He actually lives about a mile down the road. Responding to texts would be nice. I was a child of obligation not devotion with my mother for too many years. And, I don’t want him to feel the same. So, I won’t and can’t count on him for future support.
And, I must prepare for this, too.
Of the Moment
A few years ago, I heard the writer Gary Shteyngart talk about since the ever-accelerating speed of technology, the inability of writing in present time because when something is published, technology might have very well moved past that moment.
It’s a little like that for me now. Almost eight months since diagnosis, I have started taking a mild medication for the tremor. Though, only in the morning. And it seems to calm it, some., hard to tell. But also hard on my stomach. So, in the afternoon I now take a 1/1 tincture of CBD/THC. Though a little stoned, my tolerance is getting stronger. And that helps, too. Still the powerhouse stuff at bedtime.
But tomorrow or next week the positive effects might not be as positive. Time and symptoms have marched on before I get used to the now.
Month nine. Stopped the meds. Is the tremor worse than the bad stomach the meds give me? Right now, the stomach is winning my affection. But, to quote the great Ferris Bueller once said, “life moves pretty fast.” Next week, maybe another decision. Next after that, yet another.
Don’t get cocky and get used to the now. Everything is now, and nothing will stay now.
I’ve also stopped looking at the PD group pages on FB. What wonderful people who are very supportive with a wealth of personal experiences that they so openly share. But, they are too old for me. Vain sounding? Yup. I’m not ready to be pegged that way. Not yet. I would love to be able to be so completely supportive of the patients that post. There is such a great need in such great misery. But, I can’t live there, yet. It does not help me. And, I need to be selfish right now. I need to look up, not down.
In the play Our Town, Thornton Wilder asks if anyone really appreciates life. His answer is “no, but saints and artists do…a little.” There are things in life that are supposed to teach us to live every moment to its fullest. Many of us will have life events that remind us of this. A premature death of a friend. Recovery from any kind of near miss from an accident or an illness. Things that remind us to be open and appreciative of what we love and love to do. These awakenings tend to wear off with healing or time, and then we are back into the lull of everyday complaints.
Suffering can become a competition. It becomes a way of worth, equalizing and being in the world. But, it is also a great excuse, cop out, for not moving forward. For failure. Sometimes it can be true. But not as much as we pretend. I tell you this from first-hand experience. As I said earlier, it is the one bad trait, of so many, that I was able to shed many years ago.
Finally had appointment number two with my PD MD. Yes, there is progression, but he considers it a mild amount, comparatively. Yes, the tremor is pretty out there, but I didn’t fail any more “tests.” He was very pleased. So maybe not a goddess bod, but this outcome is much better.
As my friend just expressed, I’m sure everyone with devastating news wishes for a Fairy Godmother to wave a wand and swish it all away. I am no exception. But, I am a fanciful pragmatic. I’m pegging my dust on science. There is a new trial therapy for the LRRK2 gene that I am biting at the bit for. My PD MD gave me permission to be a squeaky wheel to keep me on the list of potentials. Even if I am the placebo side of the study, (boo) I would still be moving the results forward. Upward.
We also discussed the many muted possible symptoms, sniffles, I’ve had for at least a decade, if not life-long and the idea of when this disease actually begins. His answer was that I was born with these two gene mutations, had them all my life. So maybe. Something more to be studied, can you be born with PD?
So much to be explored. Like the galaxy. And I want to be one of the explorers.
Find purpose. I’m not done, yet. Get through winter, first.
If you are amongst the very lucky to have first world PD, meaning having ample medical care and you don’t have month to month financial worries, you do get a little kick in the head reminder every day of Wilder’s sentiments. Since there is no recovery on any horizon, you need to understand there is a today. Today I indulged in an amazing croissant. Monday, we went to a beautiful art exhibit. Last night, a fancy dinner with friends. I know there is a next, a next symptom and a next project, even if next isn’t here, yet. And there is this community of people that only want the best for each other. That’s pretty sweet, at least for now.
Please promise to tell me if my hair is ever a bad dye job.
Talk to you again when I write more.
Used by permission of the author.