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.

December 2011

Focused Ultrasound

Focused ultrasound shows promise as a noninvasive deep brain treatment for essential tremor, a condition that affects millions.

Results of first-in-world study could open doors to treating other brain disorders.

WASHINGTON, DC (October 3, 2011) – In a presentation at the Congress of Neurological Surgeons today, University of Virginia neurosurgeon W. Jeffrey Elias, MD reported that preliminary results of a pilot clinical trial indicate that MR-guided focused ultrasound has the potential to safely and effectively control essential tremor (ET), a common neurological condition that affects 10 million Americans.

Results from the study’s first 10 patients showed a 78 percent improvement in contralateral tremor scores in the hand, as assessed with the Clinical Rating Scale for Tremor (CRST). Patients’ functional activities scores improved by 92 percent, as measured in the ‘Disability’ subsection of the CRST. Outcomes and complications were comparable to other procedures for tremor, including stereotactic thalamotomy and deep brain stimulation.

“So far, this noninvasive treatment has been life-changing for patients,” said Elias, the study’s principal investigator and Director of Stereotactic and Functional Neurosurgery at UVA. “All now have improved ability to use their dominant hand to perform tasks that they couldn’t do before treatment, such as writing legibly, drinking and eating without spilling, and buttoning clothes. It has been exciting to see their immediate improvements.”

The study is using magnetic resonance imaging to guide and monitor the delivery of focused ultrasound to tremor-causing nerve cells in the thalamus, a region deep within the brain known to be an effective target for ET and other movement disorders. The treatment goal is to reduce tremor in a patient’s dominant hand.

Most study participants have had ET for decades, Elias reported. As part of the study’s inclusion criteria, all had previously taken at least two medications that failed to control their tremor. Despite the severity of their disability, patients had opted to cope with symptoms rather than undergo invasive surgical procedures.

Conducted under an FDA-approved protocol, the single-arm, non-randomized, phase 1 study began in February 2011 and is expected to treat 15 patients before concluding. All patients are being followed for three months. If final results prove successful, Elias anticipates launching a larger, pivotal trial to study the overall safety and long-term efficacy of MR-guided focused ultrasound in treating medication-refractory ET.

Funding for the study is being provided by the Focused Ultrasound Surgery Foundation, which is also underwriting a parallel study at the University of Toronto in Canada. Foundation Chairman, Neal Kassell, MD, says the study’s success could lead to other new treatments. “By demonstrating that MR-guided focused ultrasound can treat tissue deep in the brain with great precision and accuracy, we hope to open the door to treating Parkinson's disease, epilepsy and brain tumors. Much work remains to be done, but the path forward is clear,” he observed.

Kassell added, “Because the brain poses more complex technical challenges than other organs, success in treating ET will spur advancements in developing new focused ultrasound therapies for the breast, liver, pancreas and prostate, which are less complicated to treat.”

Currently, MR-guided focused ultrasound is an FDA-approved therapy for uterine fibroids; it is approved in Europe and elsewhere for the treatment of uterine fibroids and pain associated with bone metastasis. Around the world, clinical trials are treating prostate, breast, bone and uterine tumors.

Study details

The UVA study marks the first step in determining if MR-guided focused ultrasound is a safe and effective treatment for ET and if it offers potential benefits beyond current surgical options. The study has enrolled patients who are 18 to 80 years old and who have taken at least two medications that do not control their tremor. Participants, who are followed for three months after treatment, receive assessments for general health, neurological status and tremor measurements. The study is also tracking data about device or procedure-related side effects that occur within three months of treatment.

Study treatments are performed using the ExAblate Neuro, an investigational device manufactured by InSightec, Ltd. The device consists of a specially designed table with a helmet-like unit that contains phased array focused ultrasound transducers. Treatments are planned with the precision of MR imaging and then monitored with MR thermography, which provides real-time tracking of focused ultrasound delivery. The entire process is noninvasive and does not involve ionizing radiation.

During the study, a series of focused ultrasound pulses are administered through a patient’s intact scalp and skull to a precisely targeted spot in the thalamus. Patients receive no anesthesia and remain awake, providing feedback to clinicians after each pulse. Under the UVA study protocol, only one side of the brain is being treated – known as a unilateral thalamotomy – resulting in single hand tremor control.

All study treatments have been performed at the state-of-the-art UVA Focused Ultrasound Center, which was established by a public-private partnership of UVA, the Commonwealth of Virginia, the Focused Ultrasound Surgery Foundation and InSightec, Ltd.

About the Focused Ultrasound Surgery Foundation

The Focused Ultrasound Surgery Foundation is a nonprofit organization dedicated to improving the lives of millions of people worldwide by accelerating the development and adoption of one of modern medicine’s most promising and game-changing therapeutic technologies, noninvasive magnetic resonance-guided focused ultrasound (FUS). Developed to its full potential, FUS could revolutionize treatments for many of today’s most serious and debilitating conditions.

To achieve its mission, the Foundation hosts symposia and thought-leader workshops, funds preclinical and clinical research, supports the establishment of FUS Centers of Excellence, promotes patient awareness and education, and serves as the nexus of a collaborative research network consisting of sites and investigators around the world. The Foundation’s work is made possible by contributions from individuals, foundations and corporations. For complete information, visit www.fusfoundation.org.

Media Contact:

Ellen C. McKenna, 434-326-9827
emckenna@fusfoundation.org

Stephen Hodgson

I was diagnosed with mild ET about 8 years ago at age 46 after battling with it from early teens. I’ve tried everything available including Propranolol, Primidone, Antidepressant EfexorXL, Psychology, Cognitive Behavoral Therapy, Hypnotherapy, Neuro Linguistic Programming, Traditional Meditation, Holosync binaural beat meditation, regular exercise and Alexander technique. I’ve persisted with all of them some lasting several years and my conclusion is that all of them in one way or another have a calming effect, but none of them provide a cure and most of them change behaviour to some degree.

Propranolol, Primidone, Antidepressant EfexorXL,

These are the recommended drugs except for Efexor for ET. Propranolol and Primidone work initially but the effect wears off and then you go back to the doctors for something else maybe after 6 months. My doctor recommended Efexor early on and this drug in a low dose reduces anxiety and after you’ve battled through the initial increase in tremors you come out the other side with reduced tremors mainly due to the reduction in anxiety. The original tremors are still their but you do not get anxious anymore about them. However the side effect means you have to stop taking them after about a year. The side effect is as with both the other drugs your mindset is slightly altered and you become much braver, more reckless and less responsible. This is Ok in a short spell but it can cause you problems clearing up the mess left behind when you come off the artificial “high”. These drugs all help to take you to a new level but are not a cure.

Psychology, Cognitive Behavoral Therapy, Hypnotherapy, Neuro Linguistic Programming,

All these treatments revolve around changing the mindset and thought process. Your mind is a tricky beast and can accentuate tremor just by thought alone, so all are useful in altering how you think about the tremor and dealing with it. Hypnotherapy and NLP I felt were fairly short term but whilst under treatment give you a lift and reduce anxiety mainly because you are talking to someone about the problem. Cognitive behavoral therapy gets to the route of the mindset and is definitely worth doing if you think your thoughts are making the tremor worse. Out of all these CBT has the most long term effect.

Mindfulness, Traditional Meditation, Holosync binaural beat meditation

Out of CBT came mindfulness, a technique for calming the mind and thoughts akin to meditation. It works if carried out religiously for say 20 minutes each day and calms the nervous system which stays calmer and calmer each day. Mindfulness makes you more body aware and enjoying the present moment something you tend to forget as you get older, but something you had in abundance as a child. Ultimately being in the present moment calms the mind which in turn calms the body and if carried out regularly creates for a calmer presence. Holosync is a forced type of meditation and is quite powerful. The full course can take many years achieving deeper and deeper meditation, however you need an hour per day. I kept it up for about 3 years and it does alter your persona and provides deep calmness, however it does not cure the tremor. You get a feel good factor out of it and it certainly improves the tremor because it literally calms the body. I found that the calmness comes at a cost of possibly becoming tired and losing some of your energy and vibrancy. If given the choice of drugs or Holosync, holosync I found a good drug free alternative. The downside it is very expensive and takes a lot of time.

Alexander technique

I tried this because I felt body and mind control would help and the technique is absolutely wonderful. You’ll feel fantastic and exuberantly calm after just a 30 minute session with an Alexander teacher and the after effects do last. You’ll establish good posture and in turn feel more confident and calm. If you can afford it try a session. You’ll be much more in touch with your body and it’s extremely easy to do and no physical exertion is required. In fact much of the work is done lying down. I continued these sessions for some time and they enabled me to be confident and calm enough to undergo laser eye surgery, and by crikey you do need to keep still with no head restraint and no drugs or anaesthetic!!  I couldn’t believe I was able to do this, so a great achievement.

Exercise

Out of everything this is the best way forward. All the other treatments calm you or depress your nervous system altering your personality, whilst 20 minutes of vigorous exercise every single day enhances your outlook on life, makes you feel more positive, makes you fitter, stronger and energetic and in many ways overrides the thoughts of tremor. I found initially after embarking on an exercise routine the tremors subsided significantly which is mainly due to the honeymoon period of embarking on a new perceived cure. After the initial exuberance the tremors do return but then persistence with exercise brings many rewards. So if you can do low impact exercise or walking the dog regularly, all are useful. I read about a likening of the human being to a horse and carriage with a driver. The carriage is the body, the driver is your intelligence and the horse is your emotions. If carriage (body) is in good condition then the driver (intelligence) can make the carriage go better and the horses (emotions) much more easily pull the carriage along. The carriage needs to be in good condition for your other faculties to work at their best.

Conclusion

After over 35 years of having the shakes I embarked on a programme of improvement or cure and to a certain extent I have succeeded in controlling and dealing with the tremor mainly by altering my thoughts about it. What I have learnt the hard way is hiding it makes it worse as the anxiety levels increase exacerbating what otherwise might be a fairly mild event. I have learnt that there is no cure and this is the epiphany, until you accept this you’ll go on fighting it. I’ve also learnt that yes I can calm the tremors down through various medications or meditations etc but they all come with a side effect attached so you have to weigh up the pros and cons and decide if they are really vital. The main thing is no one thinks the worse of you for having tremor so it’s time now to get on with the rest of your life and enjoy it.

Hope these comments may be useful and if anyone wants any further comments on my experiences then they are welcome to make contact.

Stuart Barber

My Mother suffered from tremor and my eldest brother, now 89, has it very badly – however my middle brother has no symptoms. I’m now 78 -79 in January – I have suffered from tremor for the past 10 to 15 years that I am aware of. I have 2 sons the eldest, now 48 shows no signs, but the youngest at 46 is showing signs of the anything but benign tremor.

When we were living in England my Doctor prescribed propananol and when we moved to France some 8 years ago my current GP continued the treatment, although he reduced the strength of the dose.

Subsequently the condition worsened and I was seen by a neurologist in Agen who arranged a “datscan” as it is called here which showed it was definitely not Parkinson’s. He then prescribed a drug called Mysolene in France which is “Primidone” in the UK.

However the condition has got worse – particularly at times of stress – to the point that I have great difficulty writing and more importantly eating! Also last winter I developed asthma so now my Dr is reluctant to continue the propanalol, and has in fact stopped it.

The specialist has now referred me to Professeur Pierre Burbaud at Bordeaux centre of neurology with a view to an assessment for “deep brain stimulation”.

Having read what I can of this procedure I am nervous but will see the Professeur next month and find what he suggests.

Is there anyone out there who has undergone the treatment and would email me with their experience?

Helen Phillpotts

I was a patient of Dr Findley July-Dec 1987 for essential tremor caused by a brain tumour and I would like to pass on some feedback as below:-

I had a brain tumour removed in 1987, at Oldchurch Hospital, but the tumour had caused essential tremor in my right hand that was never corrected by the surgery, also the tremor had moved into my leg.  Although no one else could notice it, also in my speech.  I have had the tremor since I was 17 and saw Dr Findley (at the time) but no treatment could be given to me after the operation to improve the tremor so I didn’t go back to the hospital after a few years.

I stopped writing with my right hand before my operation and could never really do anything that needed control.  Early this year I was looking at hypnotherapy downloads on line and came across the following:

http://hypnoticworld.com/downloads/essential_tremor_disorder.php

After the first session there was a marked improvement in my hand (I couldn’t believe it) and would say that it was reduced.  I did the course for 30 days as advised and really would say now that the tremor has almost gone. To a point where I do not notice it daily and it is only really there when I put pressure on my arm.

Also what had gone to my leg is not there anymore and my speech no longer has any issues.  Since I have done this I have become more confident in my job and personal life and my arm does not hurt in situations where I am carrying heavy bags etc or doing physical work.

However, I will never be able to write again, right handed, or type with my right hand, but I have written left handed for 26 years, used a PC one handed and the fact that the tremor has gone is something that amazes me!

I have contacted you now as I just wanted to pass this feedback on and perhaps the same therapy could help someone else in the future. I would never ever have thought that I would be without the tremor but 6 months after I have done this therapy it has not come back.

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November 2011

Disability Sanctuary is a new dedicated Online community for disabled people with Physical, Mental, Cognitive, Developmental, Emotional Sensory disabilities and conditions. We also have a section for carers. With over 600 members the forum is growing all the time. The forum was developed due to our own experience of a disability that renders us housebound therefore we can relate to our members.

Disability Sanctuary is supported by numerous organisations such as NHS Choices and NHS Carers direct. We are currently on the pages of NHS A-Z Health which is viewed by thousands of people every day. We are also supported by Age UK, ME Associations, NRAS, RADAR, Anxiety UK and many more.

The forum is a place where people can chat and discuss to others in a similar situation as well as join in the general chat and fun aspect of the community. We have a arts & crafts area, books and poems as well as a recipe section. We also have the facilities to hold live quiz nights and competitions. These areas are very popular with our current members. The forum is moderated 24/7 by members who suffer from conditions and disabilities. Our community is completely free to join and has been designed for ease of use and to be user friendly using the most up to date forum technology.

We are now able to advertise job vacancies for disabled and housebound people due to companies contacting us and requesting a specific section to advertise their vacancies. We also have a disability help and support section which involves information and support on DLA and other benefit matters.

We have many members requesting information on organisations that deal with a specific condition or disability. We are looking to expand our links and organisations pages and would like to include your organisation. In return we ask that you could inform your members of our online community via your website, emails, newsletters and any other way you feel would be appropriate.

Calsie
 
Disability Sanctuary
www.disabilitysanctuary.com
Twitter: @DisabilitySanc
Facebook Search: Housebound Forums

My name is Michelle Bowman. I live in Hornchurch and am currently practising Reiki and Reflexology.

Reiki is a Japanese healing technique for stress reduction and relaxation.  It is a wonderful treatment for the whole person Including the body, mind and spirit creating effects such as feelings of peace, security and wellbeing. The client remains fully dressed all the time and covered by a blanket.  I place my hands in different positions around the body stimulating the flow of subtle energy encouraging positive changes throughout the body.  Restoring balance and boosting the bodies healing potential.

Reflexology.  The theory of Reflexology is that there are points on the feet and hands that correspond with areas of the body.  By stimulating these areas we look to improve energy flow, encouraging the body to work better, improving health and wellbeing.  When illness occurs in the body, the corresponding energy channels become blocked; Reflexology is applied to destroy these blockages allowing the energy to flow freely restoring the body’s natural balance and therefore good health. 

Both treatments reduce stress and are very relaxing and when the body is relaxed it heals itself.

Kind Regards

M Bowman

Telephone: 07984 442147

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September 2011

SKY DIVE - Congratulations to Tim Allen who raised £400 by a sky dive parachute jump. Full details in next newsletter.

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August 2011

Dear everyone

I am a sufferer of essential tremor, as was my father, John McNulty, who sadly passed away at the end of November last year.

Dad was a member of the Tremor Foundation and tried to do what he could to help us all control what is an irritating condition.  He was filmed in 2008, I believe, by the Foundation, because he was a professional violin player and the condition what we suffer from had a major impact on his life.

Dad and I were passionate walkers and have conquered many long distance walks together; The Pennine Way being just one of many.

We were half way through the Beacons Way when Dad had a nasty fall in the snow - not on the walk, but just outside his house last January, 2010.

Dad survived the fall - only just - but was paralysed down his left side and never fully regained his speech.  We had many a laugh together as he struggled with his condition over his final months.  The only benefit of the paralysis was that the tremor had finally gone from his left hand.

Dad was desperate to finish the Beacons Way with me as it was to be our last long distance walk together.  We had a couple of short walks planned to see him through his 80's but the snow and ice where he fell have put an end to those plans.

The Pershore Music group were singled out for recognition as one of Dad's much loved institutions at his own requiem mass, but close behind would have been the Tremor Foundation.

This is a picture of Richard Hallett our son and grandson of Mrs J Orman who has Essential Tremor.  He ran the Swanage half marathon on the 16 July 2011.  We hope his sponsorship money will help with your funds.

From Julia & Steve Thomas

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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.