My story begins, as so many stories do, with an event. Well, to be really honest, it was with a whole series of unfortunate events. I had been fortunate to have lived a relatively stress-free life until June 2016. During the year that followed, I lost my mother and my closest friend to cancer, had a feud with my only brother, was given the news that a dear friend had committed suicide, and somehow gained the attention of a stalker. It was a tough year full of unpleasant surprises and stress.
So, on a chilly day in June 2017, my partner and I set off on a much needed, two week vacation to San Francisco and Las Vegas. Life felt good again, and after a minor hiccup with visas, we enjoyed an uneventful flight. This run of good fortune however was not to last, as I was soon to have the introduction that has changed my life forever. Meet left pinky tremor.
As I lifted my suitcase off the carousel in San Francisco (being Miss Independent as always), my left pinky finger gave a little shake. The twitching finger stopped as abruptly as it started, and I quickly put it out of my mind as we went off to find a taxi to take us to our hotel. During that week, the finger twitch reintroduced itself several times – and by the end of two weeks was putting in a daily appearance, albeit only for a few seconds. All too soon the holiday was over, and we came home, with both of us much more relaxed than when we had left.
On resuming life back in our home city of Brisbane, pinky finger tremor, made regular, but not too concerning, sporadic appearances. A couple of months later, having returned to my daily life of work, settling back into home life, dealing with the stalker at hand still, and having resumed my passion, Latin dancing, my visiting tremor was regular enough that I sought out advice from my friendly family doctor, who referred me to a neurologist.
Numerous blood tests, scans, MRI’s and electromyograms followed, before the neurologist concluded that I had a functional tremor, caused by stress, which would go away in due course. He recommended no more than a few sessions of counselling for the trauma of the past eighteen months. I dutifully attended these appointments, but the tremor persevered.
Time passed and my tremor persisted – I visited chiropractors, acupuncturists, physiotherapists, herbalists and an occupational therapist to no avail. The pinky finger tremor got more frequent and then it introduced a new friend – the forefinger tremor. More time passed and pinky finger sulked a little and was less noticeable, causing the forefinger to feel lonely and invite along another friend – ring finger. As ring finger joined in on the fun that the other two fingers were having, I stopped pursuing my passion for dancing as I grew tired of explaining to dance partners that I was not in fact nervous of dancing but had a tremor. Of course, when you cut dancing exercise from several times a week to not at all, your weight increases and redistributes, which in no way helped this once slim woman’s confidence.
About this time I asked for a referral to a different neurologist, who quickly deduced that what I had was Tremor Dominant Parkinson’s Disease, despite having none of the other cardinal symptoms (resting tremor, rigidity, bradykinesia and postural instability being the four). He noted my left arm didn’t swing (it’s typical in Parkinson’s Disease for neither arm to swing), and despite my explanations that my arm swing was restricted because I made a fist when walking to stop the tremor, he stuck to his diagnosis. I was prescribed Madopar which contains Levodopa (the precursor to dopamine, which is lacking in Parkinson’s sufferers, as well as, in those suffering depression). It was at this point I discovered that there are some things way worse than a multiple finger tremor! Despite persevering with the medications, they continued to make me feel drunk and disoriented all the time, but way worse than that, I lost large patches of my strawberry blonde hair. After a few weeks I ceased taking Madopar, but new challenges were to follow. I had painful steroid injections into the scalp after seeing a dermatologist. Then for six months I had to apply greasy creams twice a day to the area. I had to part my hair on the left side and do a comb over that Donald Trump would envy, in order to hide the bald patches on the right side of my head. The windy weather was not my friend either, and I took to wearing a hat most of the time. However, on a windy day as i was out sailing with some friends, an amusing episode of having my cap blown into the water exposed my bald patches to my friends. This ended up causing some distress to both myself and my friends.
As the months moved on, I joined a Restorative Yoga class, (and omitted to see the irony that a restorative yoga class may have been instrumental in restoring both my hair and confidence as well). I noted, somewhat hopefully, that deep relaxation calmed the tremor which by now was in all four fingers on the offending hand. I progressed to Yin Yoga and became aware that when I was lying on the ground during yoga, or in bed, supported against gravity, my tremor completely stopped.
Two months after this discovery, I attended a workshop by a lovely interstate neurologist, about diet and meditation for Parkinson’s disease. Here I learnt that diary food is bad for Parkinson’s tremors, as is alcohol – but that coffee and exercise help. Without hesitation I immediately started drinking coffee a few times a day and joined a Reformer Pilates class, to try to regain once more, my former toned body. All went well until the Pilates class involved leaning on wrists and elbows, and then, my tremors got worse.
The Pilates classes got dumped, and I focused on my Yoga (noting at the same time my increasing dress size!). Yoga kept my spirits up but again fate was not on my side. COVID-19 came to Australia and lockdowns were put in place. These days of rarely going out suited me in some ways – I could hide my patchy hair and people couldn’t see my tremor. I also had the luxury of an extra three hours free time per day, as I no longer needed to commute to the city. The downside was the increase in hours spent typing had compounded the amplitude and ferocity of my hand tremor, and there was an occasional nodding head tremor thrown in as a bonus. I, like so many people during that time, started drinking a glass of red wine in the evening and discovered it really helped my tremor. Generally, two hours of little or no tremor followed my tipple. As winter arrived and the colder weather came, the tremor got worse, presenting mainly as a postural and action tremor, meaning I became skilled at spilling the contents of my cup, and making an annoying clattering sound when cutting my food. I could also triple type any letter on the left hand side of my keyboard with no effort at all. Actually, to be frank, I had no option other than to type each letter on that side of the keyboard, multiple times, if I persisted in touch typing with both hands. My neurologist was only conducting phone appointments, and so I couldn’t demonstrate to him the tremors progress nor the effect of drinking wine or lying down.
As it became evident that the transition back to the workplace would begin soon, I made the decision to try to find a new job that would allow me to work from home, and which did not involve giving presentations to audiences as my former job involved. I’m not sure whether I wanted that change because I’d lost my confidence, or was just fed up of the stares that happen when you have a tremor in the workplace, or whether I’d just got used to more free time, but I do know my husband wasn’t happy that I wanted to stop chasing promotions (and at the potential drop in salary). By then I had also consulted my trusty friend, Dr Google, only to discover that my symptoms, other than being unilateral, fitted very closely with Essential Tremor (ET). Once again, I visited my friendly family doctor and told him where I was at, asking him to prescribe me beta blockers, as I’d read somewhere that they could help with ET. He conferred with my self-diagnosis, and prescribed me Propranolol. Joy of joys this medication cut my tremor by around thirty percent. Woe of woes, as I increased the dosage my hair began to fall out again, this time at the back. And so, I stopped Propranolol. Having for the first time seen some improvement in my tremor through medication, I quickly returned to my trusted doctor to try the alternative medication for Essential Tremor – an anti-epilepsy drug. For three days I took a quarter of a Primidone tablet at night – and for three days I felt hungover BUT my tremor reduced by 90 percent. In a drunken sort of way (this drug caused nausea, dizziness and vivid dreams in me) , I was elated – until the big fight with my husband (over my suggested job resignation), and suddenly the effect was only a seventy percent improvement Gradually the seventy percent reduced to fifty then forty percent, as the side effects of nausea and dizziness got less. More experimenting with dosage showed that the optimum dosage was one tablet morning and night. This reduced the tremor by around thirty percent but I never felt quite ‘me’ due to vertigo and nausea.
So now, back to the drawing board I go. My doctor agreed that there was pretty conclusive evidence that I have Essential Tremor, which I thought would be a big relief. Not so – there are lots of different medications and treatments out there for Parkinson’s, and an awful lot of research and support groups. In a way Essential Tremor feels much more isolating due to the lack of treatment options, support and research. It feels to me that because it’s not generally degenerative, it’s not treated as seriously, by the medical profession, despite it being the most common cause of tremor. I’m not ready to give up though and just accept my hand shakes, but I’m reluctant to take any medication. This week, I tried some wrist weights – 150 gram ones helped only slightly, and one kilogram ones made the tremor considerably worse. Back to the drawing board and maybe time to try some of the assistive technologies available. In the meantime, I will continue to take advantage of my tremor to make really good cocktails – shaken not stirred, of course!
Hi Jenni, you have really been through the wringer. You really have my sympathy. ET seems to be getting more attention in the medical community so there is hope for us. I take mirtazapine but I don’t know how much help it is. My sister was on beta-blocker and it worked really well. I can’t take it. If I need steady hands for a big dinner or something formal, my neurologist told me to have a drink or two before because alcohol does suppress the tremor for an hour or so. We have taken many cruises and dinners in the dining room could be stressful if we had to sit with a group. Happy hour before works very well. By the time we sit down to dinner I am steady. I am hoping the Steadi-Two will be good. I use the Steadi-One and it helps so I can do jigsaw puzzles. One of my sons is 40 and has a mild tremor. I pray they find a cure for all of us.