Branch News

June 2010

The T Team on the road

Tonia, Janice and Geoff, the T Team, took to the road in May and promoted the NTF at the Association of British Neurologists (ABN) Annual Meeting in Bournemouth.

Using colourful posters and leaflets the Team took every opportunity to raise awareness about Tremor, its impact on daily life and the importance of the work that the NTF does and the resources it provides to numerous neurologists and to encourage them to make their tremor patients aware of the NTF. 

The conference was a huge success in many ways, not only in making the neurologists aware about the NTF, but also having the opportunity of exchanging ideas and experiences with many other neurological charities who were also exhibiting.

The NTF will be represented at other neurological meetings throughout the year. It is an excellent way to enhance awareness about Tremor and promote the NTF so that people can benefit from the help, support and advice readily available to those living with all forms of tremor, irrespective of age. 

Havering Support Group

Well, its 2.45 pm on a sunny May afternoon and I have just arrived at the beautiful coast of Southwold.   All I can think of is getting a pint of the local brew.  It’s difficult, but some old shaker has to do it.

On a more serious note......Our group at Romford seems to be going quite well.  Although, I am looking to sign up a few more members as we need a reserve team when some of us are away! Ken, Len, Denis, Colin, Edna, Joyce, Sheila and I cannot always remember each other’s names, but we enjoy each other’s company all the same. We all find that the group really helps with our problems in living and dealing with tremor. We are all indebted to Geoff for arranging our meetings.  The venue is brilliant.  It’s so central, comfortable and the tea and coffee facilities are great.

We still hope to arrange a visit to the Norfolk group in the summer and work on some fund raising ideas besides our monthly raffles.  Please contact the girls in the office if you would like to attend our group.  A very warm welcome awaits you. Tom Schubert

Norwich Group

I cannot believe it’s May already.  It’s frightening how quickly time goes as you get older.  Its early morning, the sun is shining on my face and its making me feel a lot better than I have been in the winter months.  I hope everyone has come through the winter without too many problems.

At our last support group meeting a lady called Mrs Baker came along to show us slides of Windmills around East Anglia.  I was surprised to find there were so many different types of windmills about.  Next month we have a Mr Worton speaking about the Mysterious Green Man, which I hope doesn’t frighten everyone.

Sadly, we will not be attending the Lord Mayor’s Procession this year as planned.  The display team of the Norwich branch of John Lewis have very kindly offered to help us with our float but as my son Stephen is having his DBS operation in the summer, I have decided to withdraw from the procession this year, but do feel very disappointed that we will be missing such a great day, as taking part is so much fun.

We have been very fortunate with the bric-a-brac we have been given, with lots of good quality items for sale.  We had a stall at one of the local hospitals and the hospital vicar came over and commented on the lovely items we had on display  so I would like to say ‘thank you‘ to everyone who has donated items to help raise money for the NTF.  

If anyone would like to join us at our group please feel free to contact us and come along.  We are a very happy bunch.  Ann Lack 

The North West Movers and Shakers

Hi Folks it’s your North West and Liverpool roving reporter Dixie Dean to tell it like it is for the Group.

The A.G.M. was held and the incumbent officers were again elected to serve for another term with a loud vote of thanks for everything that had gone before. The  formalities  over  it was time to get to down to the really important  topics and that was of course  how we were to enjoy each  other’s  company  during the next 12 months!

The first topic was the annual day out and it was decided to invade Llangollen in June with much merriment and plenty of eating and drinking. Old tired eyes began to twinkle and creaky joints and limbs were almost immediately forgotten! June could not come quickly enough. 

Another proposed activity for later in the year was a day of total inactivity and it was loosely christened a (PAMPER DAY) with the older males or (silver backs) of the group fighting for position at the top of the list. They had to be repeatedly told that “blonde, auburn or dark haired preferences didn’t have any substance in medicine but the ‘management’ would attempt to cater for all needs but only those of a medical nature. Another red letter day to look forward to! Many other ideas were thrown into the melting pot for consideration later and one that figured prominently was the Christmas meal together.

After all these ideas were discussed it was a pleasure to meet and greet Ian,  a new member to the group. I did try to explain that the group wasn’t suffering from insanity but we merely enjoyed each other’s company with jokes and leg pulling the order of the day. It was a chance to relax, not feel self conscious of our difficulties, and enjoy the moment, company and comradeship that always seems to happen when we get together. Perhaps that is why we are called “MOVERS AND SHAKERS”.

If anybody out there feels that they would enjoy joining in the fun, enjoyment and of course benefitting from the support, then do come along and have a look at us on the first Wednesday of the month.

March 2010

Norwich Group

Ann Lack sincerely thanks all the NTF members who sent cards and flowers to her and husband Malcolm for their Golden Wedding Anniversary that they celebrated together on the 14th November 2009.

“We had a lovely time that weekend; it was a wonderful night and one I will always remember. We danced the night away and really enjoyed ourselves even if our joints ached the next day.  The weather was as good that day as it was when we were married in 1959 and I wore the pearl necklace that I wore on my wedding day. It was the only thing that fitted me!  We had two cakes, one with a photograph of us on our wedding day and the other was as we are now.”

Instead of presents, Ann and Malcolm asked for donations for the NTF and they raised the amazing amount of £515.  The NTF Trustees and the T Team would sincerely like to thank them for their kind generosity in sending £400 to NTF headquarters.

The NTF wish them well with using the remaining £115 for all the activities that Norwich group have planned in 2010 which include a table top sale at Norfolk and Norwich Hospital. They aim to sell goods that have been donated by group members, family and friends and the money raised will help with the hiring of the hall, monthly speakers and also the summer and Christmas parties.

Liverpool and North West Tremor Support Group

Anthony (Dixie) Dean, roving reporter of the North West Group reports on the latest scandal and gossip (including one or two facts) about what has been happening in the North West Group.

“Yet again the group enjoyed a happy and relaxing meeting in December where the raffle and bingo prizes were in abundance, and virtually everyone took home prize money or a bottle of something to help the Christmas holiday start with a bang. A buzz of concern quickly spread when a steward’s enquiry was threatened because one of the ‘draws’ was won by the organiser. However calm was quickly restored when it was established that the organiser had two close relatives who were only referred to as ‘Ronnie and Reggie!

Before everyone went on their merry way (some were a little merrier then others and promises were made that clothing would not be removed in the future) a sumptuous, tasty and varied buffet was consumed with more than enough to satisfy everyone’s appetite.  I didn’t realise so many of our members were dog lovers (doggie bags were not available).  The meeting broke up in the late afternoon with Merry Christmas ringing in our ears and a firm arrangement was made to meet up on 6th January when headache and sickness remedies would be exchanged or resolutions made.

Christmas came and went and shortly afterwards I received a telephone call from Joan our much revered and feared Obergruppen Fuhrer telling me that polar bears had been sighted in the London Road and parking sleighs and huskies at the Neuro Centre would not be allowed resulting in the January meeting being cancelled.  The ten inches of snow didn’t help either. We all soldiered on living with the disappointment, but looking forward to the first Wednesday in February when we would again hear ‘eyes down for a full house.’  

February duly arrived and a shortened meeting focussed on the venue for our next day out.  No definite plans were made, but the Lake District or a river cruise was front running. We all headed for a Chinese restaurant serving ‘all you can eat’ buffet lunches even though the journey was made in freezing blizzard conditions. All this added to a totally different day where three, four or even six courses were enjoyed in the pleasant company of friends and problems and difficulties were briefly forgotten.’

I would like to finish this article on a more sober and serious theme.  If there is anyone out there who has ‘tremor’ difficulties then they would be most welcome at our group.  We meet on the first Wednesday of the month for a loosely structured informal gathering where help and information, both casual and specialised can be obtained. 

It is an opportunity to spend a few hours amongst friends who share similar problems and difficulties and where any embarrassment or wrong perceptions are left behind so that all can enjoy a good day, a meal out, drink and lively chatter.”

Havering Support Group

Tom Schubert talks about how the Havering Group spent the £30 that the Group raised last year in raffles.

“We decided to venture out for a Christmas meal in December a suggestion made by the T Team at NTF headquarters instead of meeting in our usual venue in the broom cupboard at Harold Wood Hospital! We chose a local restaurant across the road from our normal meeting place, the town hall, and the atmosphere was great as was the company and the food.

In January, we thought we might have to abandon our first meeting of the year due to the bad weather, but Ken, Colin, Dennis and I braved the snow and ice and managed to get there.  We were so glad we did as in two hours, the four of us sorted out the price of fuel, gas, and electric as well as the MP’s expenses!  Sadly, we could not come up with a cure for our shaking as we found out when we tried to get four coffees out of the machine; but even so a great time was had by us all and I can honestly say it was one of our funniest meetings to date. 

This year a few of us hope to have a stand at the Queen’s Hospital in Romford, Essex to help raise awareness of both the NTF and our condition, and we look forward to welcoming more members to our group in 2010, sharing new ideas and youthful hints.”

December 2009

Anthony Matthews of the Liverpool and North West Group provides a brief synopsis on a very informative talk with many important and useful facts given by Dr Steiger to the group’s members about the aspects, effects and treatment of Essential Tremor.

Dr Steiger began by explaining that the diagnosis of essential tremor is the medical profession saying they don’t know what it is and there is no cure. In many cases it takes years to reach the diagnosis and frequently the disability is confused or mistaken as Parkinson disease.

Tremor can and does run in families and quite obviously is not contagious and poses no risk to the general public. In spite of this people do view sufferers with fear and disdain and often use throw away remarks and comments such as “they are drunk “or “don’t ask them they are a bit slow or stupid”. This prejudice is very slowly changing but the process will be helped when more awareness is raised and the public at large are provided with more information and education.

Dr Steiger urged sufferers and their families to engage people in conversation when the situation arises in an effort to pass on correct understanding. He explained in detail about the treatment and diagnosis of “tremor” and highlighted one aspect that he actively uses and encourages other professionals to use i.e. doctors should call their own patients into the consulting rooms, explaining that if he calls the patient himself he sees them stand from seated, what assistance they need, who has accompanied the patient and how the patient manages movement or walking. This approach creates a brief picture of the capabilities, or lack of them even before any consultation, an aspect often missed by many of his colleagues. He went on to say the condition can affect hands, head, legs and voice, however it is rare to suffer from tremor in hands and head at the same time but it does occur.

Dr Steiger said that some success has been achieved in the use of anti depressants or epileptic drugs; they have been found to help in the control or lessening of tremor symptoms. Dr Steiger dispelled the theory that alcohol assists treatment, it does assist on the day it is taken but the next day the symptoms are increased and there is a very real danger that alcoholism will be the ultimate outcome with the tremor remaining somewhat worse.

Finally the use of surgery was highlighted and the degree of success was explained with Dr Steiger saying that with any surgical procedure there is a risk and when the brain is involved, the risks are heightened. Research has shown that on average the good effects and minimisation of symptoms last for approximately six years and then the condition progresses as before.

The Best Conference Yet!

Below are a few messages form some of our support groups

Tom (Havering Support Group)

Everything about the conference was absolutely brilliant. This was the best conference yet and on behalf the Havering group I would like to say thank you to all involved in making it a successful day. Here’s hoping there will be an antidote for tremor in the near future. Until then bottoms up!

With best wishes for all.

Jenny (Orthostatic Tremor Support Group)

Unfortunately, there were only six primary orthostatic tremor sufferers and their husbands or carers to hear Leah Jones talk about Orthostatic Tremor. But we hope that Leah will be able to join us when we meet next May for our ‘get together’, which will enable her to meet more people with this type of tremor.

With very best wishes to everyone at the National TremorFoundation for a Happy Christmas and a healthy New Year.

Ann (Norwich Group)

Stephen, Malcolm and I would like to say how great it was to see everyone at the AGM in Cardiff.

The Norwich group would like to wish you all a Merry and safe Christmas and New Year.