ET and me
• What is Essential Tremor?
I suffer from Essential Tremor, a common neurological condition that can affect various parts of the body . It triggers an involuntary action tremor that can have a severe impact on all kinds of activities such as writing, eating, etc. The cause is unknown and it should not be mistaken for Parkinson’s disease. A physician should always be consulted. Since it is hereditary in more than 50% of the cases, I had little doubt about the diagnostic when severe symptoms started to appear in my late 40s.
• How can you cope?
After consulting a specialist, the best to do is to join a support group and learn copying tips that are available online. The International Essential Tremor Foundation (IETF) has a great support group on Facebook. Being opened about it also helps in many ways. I think most people who do not know about ET assume it is Parkinson disease or that tremors are induced by alcohol consumption, which is ironic since a glass of wine (or other alcoholic drink) is one proven method of reducing tremors.
Only a few days ago, I had to ask the staff to bring a large cup of Latte to my table since it was filled up to the brim. A good way to start a conversation!
In some cases, it makes for a good story, like when I was passing a security checkpoint at the Dar es Salaam airport in Tanzania at a time when terrorists were quite active in the region. The security agent fixed his gaze on my shaking hand, and that only stressed me more and made me shake more, but fortunately an explanation and a smile saved the situation.
• Never rely only on Internet “information” and anecdotical stories
Websites such as Mayo Clinic and Johns Hopkins Medicine can be very useful, but they will never replace a professional diagnostic and the advice from pharmacists concerning medication cocktails. As an example, I would mention the advice from a well-meaning member of a support group, who answered a question about possible natural remedies. He mentioned caprylic acid, ignoring the fact that those suffering from a deficiency of acyl CoA dehydrogenase medium chain (MCAD deficiency or MCADD) should strictly avoid fasting, and avoid medium chain triglycerides or MCT sold also as… caprylic acid or in the form of coconut oil. My DNA analysis confirmed I did not have MCADD, but for those without access to such information the risks are real. On the other hand, Having asthma (not severe and linked to allergies) beta-blockers are prohibited and I had to deal with ET without medication for several years, until I consulted a specialist, also brain surgeon, who worked with JAXA astronauts and prescribed an alpha-beta blocker (not pure beta-blocker) commonly used to treat this condition in Japan, Arotinolol tablets 5mg twice a day.
I will post more information about my life with ET and sharing tips in the hope they can benefit people who have the same condition. I started painting recently and am more active than ever. For writing, I just switched from holding a pen between the thumb and the index to the index and middle finger while resting my forearm on the table. It does the trick!
Category: Health
