My Journey with Parkinson's
My girlfriend and I used to joke that the most fitting epitaph for us both was "Now What". Life was just one adventure after the other for us then. We imagined the words written in our obituaries and placed upon our tombstones. We also imagined dual rocking chairs on a sunny porch and a never ending supply of margaritas… even though I now live in Mexico, I'm still waiting on the margaritas but "Now What" seems more fitting than ever.
I live in a retirement community, a pleasant not-so-little village on the shores of Mexico's Lake Chapala that we jokingly call "God's Waiting Room". The average age of the expat community is such that someone is always getting sick or dying, we are proud to count death a near and dear friend. "Did you hear that Canadian Bob died?", "Which Canadian Bob is that?", "Nice guy, always wore a hat, used to smoke a cigar, been coming here for years, knew all the old folks and the old stories, he will be missed". "Hmm, yes I think I knew him, haven't seen him in a while", "Well, no, you wouldn't have, he died". No more needs to be said, it could be my turn next. Really. Now What??
My Parkinson's diagnosis
Seven years ago I was diagnosed with Parkinson's disease (PD). I went seeking an explanation because it was obvious that there was something wrong when my electric toothbrush packed it in and I tried using a regular manual job. My right arm just couldn't sustain the regular up and down, side to side movement that had seemed so second nature just a couple of years before. I wondered if I had a pinched nerve but I was also experiencing a strange sensation in my right leg, a tingling and a malfunction that I had a hard time describing. I did the obvious thing, the thing that doctors hate, I checked my symptoms on the internet and I came up with a biggie. The internet predicted Lou Gehrig's Disease, (ALS, or Amyotrophic Lateral Sclerosis). My uncle Robbie had died of ALS so I knew what a devastating disease it is. When the neurologist gave me the news that I had Parkinson's I was relieved, he thought I was delusional.
There is no definitive diagnosis for Parkinson's as yet, though research is promising. The tests that the neurologist sent me for were mostly to eliminate alternatives. The MRI was intimidating and not cheap but also, because I live in Mexico, not that expensive. How many times have I been blessed? I chose Mexico as a residence with my ex-husband, because we fell in love with the then little village of Ajijic. We loved the people, we loved the way of life, we loved the climate. And now I also love the fact that I can access the medical help I need while people in other places cannot. A friend in Toronto is on a four year waiting list to see a movement specialist. Meanwhile, her disease will progress because, no offense, unspecialized neurologists just don't cut it. There are more than 100 other neurological conditions that these specialists need to be versed in. So, with the best will in the world, they take on patients with Parkinson's and treat them with the pills they learned about at medical school. My diagnosing neurologist told me, apologetically, that he was a neurosurgeon and not a specialist, I didn't understand the significance at the time.
My initial reaction to the diagnosis, after relief, was denial. I could handle this. I read about the symptoms and treatments that were acknowledged at that time and concluded that I would take no medication, the treatment offered seemed to promise nothing more than reactions that sounded just like or worse than the problem. Without actually saying so, the doctor seemed to comply, he prescribed Amantadine and I took off to try it alone.
I started to practice Qigong which, to this day, really helps. This ancient art, performed correctly and steadily, can help in all manner of ways. From a strictly physical perspective, it helps with balance, flexibility and strength. It is a moving meditation that has helped me practice mindfulness which in turn has given me a coping mechanism. When the PD gets too bad I can practice the movements or just the breathing and I always feel better. Qigong is also a philosophy the primary tenant of which is non-attachment, being aware but not succumbing to the emotions that so often drive us mere humans. This helps me keep my PD in perspective, aware that I have it but not emotionally tethered to the fact, just getting on with things. But I am getting ahead of myself, in the initial stages of my PD the physical and meditative practices were all that I knew, and they helped, enormously.
A word of caution. The Western world, being what it is, has discovered Qigong and has commercialized it. In my class there is no grand-standing, no one goes into trances or makes strange noises or throws themselves on the floor in an ecstasy of che – that's just plain silly.
A new doctor
In spite of the Qigong and a myriad of natural remedies that I tried from C0q10 to acupuncture, I gradually slipped into the degeneration that defines the disease until I was a mere shadow of my former self. I still had times when I felt almost normal and tried to socialize and pretend that all was well but the reality was that I could hardly look after myself. I couldn't scramble eggs, cut bread, or prepare the simplest of meals. I was contemplating a nursing home or suicide anything to get off the treadmill that had become my life. I gave in and visited a neurologist who visits once a week from Guadalajara. He prescribed Sinemet which seemed to make me worse, he doubled the dose and I was doubly bad. I've since learned that, one, he wasn't a specialist and, two, Sinemet was the 'go to' first treatment for Parkinson's, the oh-so-very-young neurologist just didn't know how to go beyond it. I dropped the Sinemet and I dropped the neurologist, I was better off on my own. Then, out of the blue, and over the course of three or four months, I received, from three very different people, news of a doctor in Guadalajara who specializes in Parkinson's and other movement disorders, it appeared that he was working miracles for other PD patients in our expat community, I figured the universe was telling me something I needed to listen to and phoned for an appointment.
The day I visited my doctor in Guadalajara changed my life. He prescribed a bunch of pills, more than I would have liked to be taking, he promised me they would work and they did, I got my life back. That was almost three years ago and I haven't looked back. My Qigong teacher supported my visit and encouraged me, my new neurologist was clearly impressed by my response to the meds and though his eyes glazed over when I talked about Qigong, he encouraged me to keep doing "whatever you are doing".
Sometimes I have to navigate conflicts between the advice given by my Qigong instructor and my neurologist… I have been having the most amazing and vivid dreams. The Qigong instructor is thrilled, "write them down, enjoy them, learn from them, you are tapping in to your consciousness". The neuro got out his pad to write an anti psychotic prescription. I get to choose which way I want to go. I really enjoy those dreams!
Don't get complacent
Partly because I often feel so good, I have to have alarms on my cell phone to remind me not to eat for an hour before I take my meds and a different sounding alarm to say "It's meds time". This happens for me five times a day. My friends are accustomed to the sound and often chorus "Meds time" to the sound of that alarm. To them, my Parkinson's has just become a part of who I am, at least that is how they make me feel and I am grateful to them for that. I try to be light-hearted about my symptoms and encourage my friends to be the same. I welcome the occasional well intentioned joke and poke, they normalize things for me.
Since the beginning, and even now, I am embarrassed by the visible traits of PD. In the early days I would tell perfect strangers about my condition because I didn't want them to think I was drunk. When I'm drunk, I'm drunk and you can look at me sideways as much as you like, but at eleven in the morning I am not drunk! I was taking a walk in the village one morning and bumped into a gathering of young girls, they stared a bit then, giggling amongst themselves, called me "la borracha" assuming that I wouldn't understand the expression. There are a number of ladies who might fit the description in our town, but I am not the drunk lady, usually!
In spite of the medication, and sometimes because of it, Mr. Parkinson taps me on the shoulder from time to time just to remind me not to get complacent. I find it hard to commit myself to a full day of activities because, as well as the interference of the meds and my need to fast before taking them, I know I am going to have at least two or three "down time" periods during which I just have to rest. It is hard to describe these episodes. Sometimes it feels like a panic attack, a physical pressure on my throat and chest that restricts my breathing and makes me feel that my clothes have suddenly become too tight for my body. I feel like my body is grossly expanding like Harry Potter's aunt flying balloon-like into the twilight. This uncomfortable feeling has me throwing off my clothes when I am alone at home, and really wanting to when I am in public. So far I have resisted public humiliation! Let's hope dementia isn't in my future because I might become a regular strip tease feature with the audience yelling "keep them on!". These down times are happening more frequently as my body is becoming less receptive to the meds, but I am still so much better than I was. The symptoms make an appearance, especially first thing in the morning and about half an hour before and after I medicate and sometimes I just have a bad day.
The list of PD symptoms is as long as your arm and each sufferer seems to have their own part of that list. I long ago stopped reading about PD because the list just seemed to grow and grow. Every little issue I have had with my body, from conjunctivitis to constipation, from pain to panic attacks, from drooling to difficulty swallowing, can be related to Parkinson's. Sometimes I just get sick but I never know if it is something different or that mischievous PD making an appearance in yet another disguise.
All that said, there are times, minutes or hours, even days at a time, when I feel completely normal. I live for those times and prefer to forget the off periods.
That's why, last week, I hiked up the mountain, a mountain that defines the northern border of our little town. A girlfriend asked me to accompany her to a Posada hosted by her Mexican friends. I didn't even think about it, I just said "yes". Mutual friends thought we were crazy, she for asking and me for accepting. But we set off nonetheless. We had a lovely day and Mr. Parkinson hardly made an appearance. Our wonderful hosts had made sure their burro was freshly shoed for their elderly relative and for me, just in case I had difficulty getting up or down the mountain. I was just fine! I just put one foot in front of the other. I can even boast that I made the journey with less huffing and puffing than some others - ok, so, the ten piece band that played for us also had to carry their instruments including a trombone – but…! I made it up and I made it down and no after effects.
I recently joined a fledgling PD support group. It's open to sufferers and their caregivers and we're still trying to figure out what we want to be when we grow up. At the beginning there were eight of us now, at least for the duration of our non-tourist season, we are four. Three men, and me; three Brits and a German (I am one of the Brits). We talk about our symptoms and share our fears and concerns, we laugh about ourselves. We bitch about the embarrassing drooling we all four suffer from and we discuss the different ways this disease has manifested itself in each of us. We all have difficulty making ourselves heard as the PD has affected our voices, making them low and hard to hear and understand, we laugh as we try to communicate with each other over a large round table, we are thinking about calling the group "The Whisperers". Then we talk about our ordinary lives, our travels and interests, our passions and desires – nothing G-rated! Just four people trying to cope. I love this group.
It's a life sentence
Parkinson's is not a death sentence; it is a life sentence, you don't die of PD, you die with it. It can last 15 or 20 years so I believe it's best to figure out a way to live with it. For me that has been a combination of medication, Qigong and acceptance. By acceptance I don't mean complacency, I mean an acknowledgement that PD has attacked by body and that I must do my best to manage the symptoms and my life. I rest when I need to and try to do it without getting frustrated. Qigong´s meditative exercises and its philosophy of detachment help enormously with this.
I look forward with a little trepidation to whatever the future holds. New and better meds seem to be just around the corner so, who knows?
I have my neurologist, my Parkie group my Qigong and my friends. I am lucky. Living in Mexico with its warm people, laid back attitude and accessible medical care makes it just that much easier. "Viva Mexico"!
Do you find music to be an important factor in your life with PD?