Essential Tremor and Me
My name is Betty Faulkner and I am 75 years old. I have lived with Essential Tremor and the frustrating symptoms of functional movement disorder for 50 years.
The Usual Struggle with Essential Tremor
I remember having job interviews for professional management and accounting positions and being told I don’t need to be so nervous. I wasn’t nervous at all, it was my internal and postural tremors, I was in my mid 20’s and early 30’s at the time. I did not know why my right hand shook, but it did and I was not nervous.
My sister in California has a slight tremor and her doctor asked her if anyone else in the family had shaky hands. He diagnosed Essential Tremor in me (my tremors were much worse than hers, even when I was in my 20s and she was in her 30s). At that time, she was taking Beta Blocker that was controlling her slight handshakes. After her doctor took her off Inderal when she was 82, the shakes were just – WOW!! We never knew she had Essential Tremor until that happened. The doctor put her back on a Beta Blocker and her anxiety tremors shut down.
I wish I could take Beta Blockers for my functional movement disorder. I don’t know why she is on them but the side-effect of controlling her tremors worked wonders for her.
My Essential Tremor Discovery
Anyway, that is how I found out I probably had Essential Tremor from when I had those uncontrollable shakes and functional movement more than my sister. I talked to my doctor who then sent me to see a neurologist that carefully examined my condition. “It isn’t Parkinson syndrome, so you are ok don’t worry about it”. It wasn’t horrible at a young age. However, at some point, my neurologist tried to prescribe a drug for my anxiety tremors, which I can’t remember the name of. He told me it had horrible side effects and I may prefer the postural tremors then to the side effects I would experience. Oh, was he ever right! I suffered from nausea, my balance was non-existent and he was right, I would rather shake than feel these effects. To this day I don’t know the name of the medication.
Essential Tremor and My Family
When we had our 3 little boys nobody noticed my tremor – I was too tired to shake. As I wasn’t out in the workplace for eight years, the internal tremors weren’t a public problem for me very often.
When our youngest son was 8 years old, I returned to work as an accountant in public practice. The shaking was manageable because I went to work with a firm of accountants that I had been a student with. It wasn’t a problem, I simply worked in the office, with no public contact. Afterward, I eventually went to work as an auditor with the federal government. That’s where things got a little tricky.
My job required going out to different businesses to audit their financial reports. Some people just looked at my hands and noticed how uncontrollably my internal tremors were. Some asked why are you so nervous, some became nervous themselves (probably expecting me to find problems) and some did ask me why my hands shook. As a professional, it was demeaning and embarrassing to deal with these tremors in front of clients. I tried all kinds of psychological tricks to deal with it but overall, it was hell. I eventually quit. The stress and anxiety of my job and health were too much.
Essential Tremor Treatment and Medication
My sister had finally heard about Motion Disorder Clinics in San Francisco so I went searching for one in Edmonton. I found one at the Royal Alexandra Hospital in Edmonton and was able to meet with a neurologist to hopefully help with my essential tremor. I had to take my teenage son with me as I was not sure of remembering everything when I was very agitated and shaking so badly.
The neurologist was wonderful, he explained Essential Tremor, what I could do about it, and what the future held for me. We discussed medications and side-effects that I wish I knew 20 years earlier.
I was seeing a psychiatrist for anxiety and depression at the time so I asked him if he would take on handling my tremor issues. He talked to the neurologist and started trying medications. First, I had a small dose of Topamax which helped a little. Then he increased it but I had no appreciable improvement, so he added mirtazapine and that is where I am now.
The neurologist advised me that if I was going out to dinner and was very concerned, I should have a glass of wine before as alcohol will suppress the anxiety tremor for an hour or two. After learning about the effect of alcohol I studied the work that has been and is being done to identify the effect alcohol has on Essential Tremor.
The International Essential Tremor Foundation is a great place to find the research that is being done or has been done. It was reassuring.
Helping Others with Their Tremors
When we were on a tour boat in St Petersburg, Russia we were sitting at a table with a man who had terrible tremors. I asked if he had Essential Tremor, and he did. When they served champagne, my husband took two (small glasses) for me but this man didn’t take any because he would spill. I asked if he had ever taken alcohol to control his anxiety uncontrollable tremor. He did not know about it. In fact, he knew so little. My husband got two glasses of champagne for him and he saw that alcohol did help to reduce the tremor. I also told him about the International Essential Tremor Foundation that he could seek help for his tremor condition.
My Current Tremor Status
Over the last 10 years, I have had more postural tremors in my legs than ever. So far, I haven’t found anything to help that, I almost sense that my ET was getting worse. I am also experiencing uncontrollable head tremors, occasionally my voice will shake as well. I don’t understand why this tremor doesn’t burn calories, it would sure be nice if it did.
I use to love to write and use my computer for this task. However, because of my Essential Tremor, I no longer do that. I find sometimes asking for help when needing to do handheld tasks. The tremors have become so frustrating that I even have to go to the bank to verify any checks I have signed, seeing that my internal tremors make it difficult to write.
International Essential Tremor Foundation Tremor Awareness
I just looked at the IETF website, and March is the tremor awareness month! They are asking people to spread the word or donate to their cause. Click here to learn more.
I have been doing so for the last 20 years and I decided I was tired of being embarrassed and was going to tell people what Essential Tremor is. We have taken 20 cruises and have met so many people with tremors who know little or nothing about how they can treat their anxiety tremors.
IETF is offering posters for free for anyone who wants to put them in their doctor’s clinics or seniors’ centers. If interested, click here.
With our cold winter, I am making good use of my Steadi-One glove so I can play with jigsaw puzzles. I am into 1000 puzzle pieces right now. My husband isn’t into puzzles and we are still in lockdown (seems like all year now) so a puzzle kind of passe the time. Without this Essential Tremor glove remedy, I would go crazy with my Essential Tremor. I broke down and gotten large puzzle pieces, so it is easier to see – guess my age is showing. When you do these on a cruise, there are 5 or 6 people helping.
Well, the world is opening up (maybe), I am supposed to be able to go to the hairdresser on Thursday – as long as our numbers keep going down. Keep your fingers crossed – even if they are shaking…….
Learn more about Steadiwear’s progress and the release of the Steadi-Two by clicking here or follow their pages on Facebook, Instagram & Twitter. If you prefer to join their community group on Facebook, click here.
Thanks for the information Pat. I wondered about DBS but was initially told it could only be done on one side. I would have had to go to Toronto to have it done. I just struggle along. If I didn’t have my husband’s help, I don’t know what I would do. He does all the cooking. I am not sure I am safe with a sharp knife these days. I have voice tremors sometimes are not severe so I hope they stay away. I have enough to cope with. Luckily a glass or two of wine settles everything down for an hour. Right now my hands, legs and head are shaking so I am having happy hour and blessing my neurologist who told me to do that.
My husband is 74 and has had Essential Tremor since his early 20’s. The symptoms have progressed as he has gotten older. When he was 65 he had deep brain stimulation (dbs) for his left hand. The results were really good, so he had the dbs done for the other hand. As he has aged since the dbs surgery the symptoms have progressed. His tremors are still better, but not as good as right after surgery. The one side effect when dbs is done for both hands is that his voice is affected. He can adjust the power to his hands so his voice is better, but it means his tremors are worse. He is still glad he had bds, as when he turns off the power to his hands the tremors are really bad.
Hi Pat, Thanks for sharing his touching story with us. We have heard that DBS dwindles in energy with time from quite a few of our customers and enquirers. Have you spoken with your assigned representative about this issue?
Thanks Pat. It breaks my heart that ET is passing on in our family. I will do everything I can to help find relief for it and, hopefully, a cure. The International Essential Tremor Foundation is working hard to encourage research and spread the word. That is where I get my news on current worldwide research. They care.
Super proud of you for your courage, Mom! It has been an incredible struggle but you keep fighting and now are helping others with their journey. You remind me of a pioneer. You and the folks you are working with are building a brighter future. Greater awareness and understanding will bring advancements and hopefully one day, a cure.
Thank you for a most interesting article and sharing your experiences. I had no idea there were Clinics devoted to motion disorder, nor aids like the hand stabiliser…..my GP has only mentioned drugs. As yet, my tremors are fairly minor but have gotten worse this last year with the stress of Covid and looking after my elderly Mum. To the point where people have started commenting on them. One of my sisters comments every time :/ Helpful, not.
Lissa, I really understand. Most of my life people have commented on my tremors. They are getting worse right now. Like you, I blame the stress of Covid. Life is not normal. We will bounce back! I don’t think most GPs learn a lot about ET as it is not considered a life threatening disease. It just makes our life difficult and usually doesn’t do that until we are older. Keep an eye on Steadiwear. Their first glove works really well but the second one is lighter. I am waiting to try it. I am glad I could help you and hope to be able to keep on with articles. Take care of yourself.