This section of the website will be used to showcase personal stories of members of the National Tremor Foundation, that will inspire hope and help others with tremor find ways to overcome their difficulties. We are currently collating personal stories, and are looking to build a strong library of items. Please contact us with your personal stories.
I am glad to find this site and reading you real experiences so similar to mine. I have lived with these shakes most of my life, rekon since about 13 and it has grown worse. About 5 years back I was put on propanolol , I take 80mg a day as a single dose but the tremors continue. I tried primadon but has I had to stop after a sigle dose due to side effects. I am 46 years and this has been such a limiting factor in my life. I am always observing my two kids ages 8 and 11 for any signs and very sad that there is 50% chance they would suffer like me. I live in Leeds and would want to join a support group in the area.
Hi, I have had this 'condition' since my early teens. It has had a lasting impact on my life - not helped by the prescription of ativan and the consequences of addiction and coming off - all because of the embarrassing tremor!
Curiously, did consult Professor Findlay way back at Queens Square, London in 1993/94.
Gone through the avoidance routines, carrying drinks for others, and 'chip & pin' is a godsend after signing cheques!
Currently - now in my late fifties, I am not on any medication, apart from the occasional Bach Rescue which reduces 'stress'. Yet, it restricts me - afraid others will see the tremor - and wonder why, and find 'eye-contact' difficult in case my head starts shaking!
Would be especially interested if there are any members in the Cardiff area? I moved here - to join Paul who has a more minor tremor, about six years ago, after living in Herts.
Hi Lauretta,
I am 73 and have had essential tremor since I was born. I took Propanolol and it worked but I too had to stop medication because of side effects. I just wanted you to know that my thoughts are with you as I know how you worry about your kids as I worried so much that my daughter would inherit it. I am thankful to be able to say that she is 47 and has shown no symptoms at all. I also worried in case it could skip a generation (don't know if this ever happens) but again I am happy to be able to say that my 19 year old Grandson shows no symptoms. I hope you are lucky too and your kids are OK.
Christine,
as I posted earlier I am 73 and have lived with this condition since birth but the big issue with me was that no doctor ever named it and it was only in the last 2 years that I have been able to name "my shake"........believe me it makes a difference. I have suffered all the things you say especially as many people presumed I was an alcoholic when I couldn't carry things, write etc. I have found that being open with new people I meet and saying I am happy to buy you a drink but could you carry it because I have ET is all it takes. I know it is not as simple as it sounds, but believe me it works. I have only recently been able to tell people I have known for years what is actually wrong with me and this has been an eye opener because they tell me they have always been embarrased to ask what was wrong or offer to help in case I was offended. I urge you to be brave and try and tell people what is wrong with you and you will be amazed by their response. People find it hard when they don't understand and are embarrased to ask (that's how our parents taught us to behave) but when you are open and tell them they are so much more relaxed about it. I wish you luck.
How interesting to read the comments of others who suffer with ET. I am in my late 70's and have suffered with this problem for as long as I can remember and only recently discovered that I am not the only one with this disorder. In business I always found it a great disadvantage and at times most embarrassing, especially when signing correspondence etc.Always worse when observed by others! Since opening up with my GP and learning that, far from being alone, there are many,many, fellow sufferers out there I have started being more open about my shaking and find that it has helped considerably. Like another of your contributors I have found the Chip and pin to be a godsend, no more struggling to write and sign cheques! I am now looking for a solution to my yips when trying to sink putts during a round of golf !! At the bar I always request that my glass be not filled, this helps me to walk away from the bar without spilling my drink all over the floor! Best wishes to all, especially young suffers out there, I believe that had I had the courage to admit to my condition,always assuming that I had known that I was not unique, I would have found the majority of folk to be understnading and helpful as I do now.
I have suffered ET for several years ,I am not able to write anything even I can't sign
or feed myself especially when I want to drink something .This has caused me alot of stress and depression.
I am not able to concentrate ,even when I want to read something and caused me alot of sleeping disorders.It is not somethig I ever wished but I understand many people are suffering the same disease.Can anyone help me what type of disability I have to claim or if I can find any support group in Leeds area
Hi - I wrote in before and no one got back to be me... so I'll try again!
In December I started having violet tremors.... couldn't work, drive.. much of anything 4 months. Finally in April I was diagnosed with a Functional Movement Disorder (but to be honest I'm still skeptical of this diagnosis). I'm 23 years old and I'm finding it very difficult to deal with as the doctors can't do anything for me! I take Ativan to stop a tremor in action but I usually always have a tremor in my right and hand legs. On a good day I will just have a tremor in my head... on a bad day I can't even hold a fork to feed myself! I have started back at work and I feel as tho I am getting worse. I hate the Ativan because it makes me so spaced out and tired but it's the only thing they will give me to help! I am looking for a support group either on line or in the Calgary, Alberta, Canada area. Can someone help?
Hi Rebecca!
I have emailed you personally. Have you contacted the International Essential Tremor Foundation who are based in the USA www.essentialtremor.org at all? They should be able to put you in touch with a group in Canada.
Hi I am new here and I'm a carer to now 2 people in my family with essential tremors. My husband has suffered with them for about the past 5 years and as of this year our 14 year old daughter has now been diaganosed with essential tremmors. I'm basically looking for advice to help my daughter and having found your site tonight will be letting her know but can't promise she will join but I hope she does as I've been reading she's not alone out there.
Hi Andrea! Membership is free to under 18's if your daughter does decide to join. We do try and put members in touch with each other. It might be a good idea for your daughter to make contact with one of our younger members.
Looking for support group in the Nashville TN area. Thanks