Letters from You

At the NTF we are always thinking of ways to share news with you and this letters page is an added edition to the website which we hope you will enjoy and at the same time find helpful.  In future we would like to include more letters.

June 2010

Linda says: Many thanks for your new format NTF News which I read with interest. I particularly enjoyed Mr Pawade's article, and his retirement from a profession that he clearly enjoyed must have been a great sadness. Ed's article was also encouraging to read and must surely give reassurance to the younger generation unfortunate enough to have been diagnosed at an early age.

I inherited ET from my mother, who died in her eighties. Towards the end of her life it was a family joke that there was more tea on the tray than in the cup!  Now, at the age of 70, my tremor is becoming more prevalent. I used to type at 60 wpm, but now often have to correct double letters or spacing where there shouldn't be any. I do reasonably fine needlework and make and paint porcelain dolls. On a good day, although I still shake, I can cope, but on a bad day it can be quite frustrating.  

I found your list of helpful hints most useful, and some of them I had worked out for myself. Others I shall put into operation. So thank you. I have been lucky through the years, having had a happy healthy life, and two healthy sons. On the odd occasion when I become frustrated with my 'shakes' I thank my lucky stars that if this is the only burden I have to bear, it is very small in comparison to so many who must suffer far worse illnesses. My friends now notice that I have ET, and I have told them all about ET and we all have a good laugh. If we go out for a meal, after the first glass of wine nobody notices anyway.  

My next door neighbour, much younger than me, has been under a great deal of pressure, and she I noticed, has the same problem. I now pass on my magazine to her, and I hope one day she will join your very worthy cause. Again thank you for the NTF News, and all the well informed medical articles that are included, which I find very reassuring and informative. I hope that our dire financial predicament improves in the UK and you will continue to go from strength to strength.

George says: 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 sufferers 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 understanding and helpful as I do now.

Greta asks: Could anyone advise on suitable medication for someone who has asthma as well as ET? I have been using asthma inhalers for about 20 years over which time my hand tremor has worsened. I now use Fostair inhaler which is a combined bronchodilator/steroid.   It works well for the asthma, but the suggested full dosage makes my ET much worse. Apparently tremor is one of the side effects of this drug and after the first few doses; I felt I was shaking all over. At the suggestion of my asthma consultant, I now take half the suggested dosage and manage on this.   

I believe it is not advisable for asthmatics to take beta blockers, but what could I take to help my ET? Bearing in mind that I am taking asthma medication my GP advised that 'breathing comes first' and offered no medication for ET.  

Professor Findley says: Asthma is very common and there are many patients with ET who have asthma. All the asthma inhalers contain drugs which will enhance normal tremor and also ET. However, it is necessary for most patients with asthma to use an inhaler.

Beta blockers are absolutely contraindicated in asthma, and can produce very serious side-effects if they are used.  Therefore, asthmatics with ET cannot use beta blockers.  

I would suggest that you see a movement disorder specialist, and have your tremors reviewed. You could either consider one of the alternative drugs, i.e. Primidone, Topamax, Gabapentin - but you will need expert advice to start these medications. There may be other ways of treating tremor, but my advice in this situation, is to get a specialist opinion. 

Ed asks: First of all may I tell you how finding the Tremor Foundation last year has helped me in many ways so please keep up the good work.

In reference to your article on writing difficulties for young people with ET (Ref NTF magazine Dec 2009) I am 72 and was born with ET. When I was at school using the old pen and inkwell I was always in trouble for poor writing and ink blots, so I taught myself to write with two hands. I am right handed so I hold my pen in the normal pen grip in that hand but use the index finger of my left hand against the pen and the index finger of my right hand against that (see photo below). Keeping both hands firmly on the writing paper and close to my body I can write legibly and for quite a long time without getting cramps. 

On another issue about ET, if I get a heavy cold and a sore throat my voice goes husky but loses its tremor. Also I have tried taking Primidone but had to give it up because of side effects i.e. I kept falling asleep (possibly my age) but I suffer from Tinnitus and when I was taking Primidone this disappeared. Has anyone else experienced these things or can the medical team explain them? 

Professor Findley says: Thank you for giving us this interesting story about your writing difficulties.  What you have developed are trick movements which will minimise the impact of tremor. The use of two hands to carry out an activity is well recognised by tremor sufferers, who are attempting to reduce the impact of the tremor. The tremor between the two hands is always out of phase, so that using two hands together, there is a degree of cancellation of tremor, and thereby improved functioning. 

As regards essential tremor of the voice, I have never heard before a report that a sore throat improves tremor of the voice. I guess there must be some mechanical effects of an inflammation in the throat structures, which reduces the amplitude of tremor. 

As regards Primidone helping tinnitus, this is not routinely used for tinnitus.  Indeed excess of Primidone may induce some tinnitus in some patients. However, Primidone is a relaxant and many relaxants will have a good effect on tinnitus.