Multiple Sclerosis Society of Jersey October 2017

Monthly Draw There are only two draws left this year! It might seem early but we have enclosed a form for the monthly draw form for 2018. Please get in touch if you would like more forms for your family and friends or alternatively you can print them from our website under forms. It is really important we try to sell out of these as they make a really valuable contribution to our income for the year and plus you can win!

Christmas Lunch We mentioned this in Junes newsletter but now we are enclosing forms for the lunch. We will be holding it on Saturday 9th December and we would ask for everyone to be seated by 12.40 so that we can welcome our patron, who is the new Governor, Sir Stephen Dalton. Lunch will be served from 1PM.

The cost will be £10 for Society members, £10 for the first guest and £20 for guests thereafter.

2018 Membership We are being super organised and enclosing the forms to renew your membership for 2018. This costs £15 per calendar year and not only does this give you access to what the society can do for you but also to the MS Society UK.

Fundraising Events Marathon – our Treasurer completed the Jersey Marathon on Saturday 1 October in a gruelling 5 hours and 14 minutes! She has raised over £200 to date! Fantastic!

Quiz night – will be at the Post Horn pub on 20 October at 7.30PM. Tickets are £12 which includes food. To pay on the night is £13. It is essential to buy tickets as the event was sold out last time. Please contact [email protected] or call Jackie on 499665. Any raffle prize donations will be welcome.

Anniversary Celebration Event To celebrate over 50 years a registered charity and that our charity number is 007, we will be holding a black-tie event at the Royal Yacht Hotel on the new date of Saturday 3 March 2018. This date has been revised following a clash of events with another charity.

We are really excited about this and the committee has been working hard to finalise the details. We will have welcome drinks, casino tables, party booth, raffle, Jersey Bounce will be performing and also an online auction together with a three-course dinner and petit fours.

Tickets are £95 per person or £900 for a table of ten. This may seem like a lot of money but we are providing guests with a lavish event that will raise our profile locally and of course donations.

One of our committee members wanted to share with everyone what the Society means to her and why she is supporting the event;

“I was diagnosed with MS just over a couple of years ago and a few months later, I joined the Society. The help and support I have received has been amazing and I am so grateful for what I have been provided with. I have been able to claim towards my complimentary therapy and I have had so much advice from the Physio Department in the Cheshire Home at the weekly sessions, all of which is paid for by the Society.

As I imagine is the case for many of you, my diagnosis has had a huge financial impact. I had to stop work, due to the chronic fatigue. I will be honest, finding £190.00 for me and my Husband to attend this Anniversary event is not as easy as it was when I was earning my lovely salary. When I think of all that the Society has given me and done for me, well it’s priceless, and certainly something I could never afford. So, I am putting on my glad rags, adding a touch of sparkle to my walking stick and we are going along to support the event and help raise awareness.

Give yourself a treat! Let your friends and family know what is happening, and have a great night out with them. My Hubby and I have decided these tickets will be our Christmas presents to each other.

The Committee have worked so hard to organise this amazing night for OUR benefit! The Society needs us to help make this a huge success. If we are there, talking to people and explaining how we really appreciate the MS Society and relate how much it helps us, then hopefully people will be willing to donate as much as they can.

Best Wishes Shirley Simpkin X” Please let all your friends and family and colleagues know so that we can make a huge success of this!

Why I chose Lemtrada One of our members went to London earlier this year for the drug Lemtrada. We contacted her to find out a bit more. Here is what she had to say;

“I am a 33-year-old suffering from relapse remitting MS. I was diagnosed at 31 (nearly 2 years ago in October 2015).

When I was first diagnosed I was put on the Disease Modifying Drug called Tysabri within 2 weeks of diagnosis. In the December during my 3rd monthly infusion I started to have bad side effects. I continued with Tysabri until June 2016. I was constantly relapsing and getting new symptoms. I came off the drug as my MRI’s also showed further activity.

I was then referred to London and first visited them in October 2016. I met with Dr Brownlee who advised that I had a high white blood cell count which is why Tysabri wasn’t agreeing with me and that my MS was Active MS. Dr Brownlee spoke to me about the drug Lemtrada (alemtuzumab).

Dr Brownlee instantly reassured me and gained my trust. When I returned to Jersey I was offered another less effective drug. In Jersey Lemtrada was not available probably due to costs. I left a message for Dr Brownlee in London the next day to call me. At this stage I was totally confused on what to do. He called me within 2 days and again made me feel confident about Lemtrada.

The drug kills off certain cells of the immune system and consists of 2 infusions. The first infusion is over 5 days and a year later you then have the second infusion over 3 days. There is monthly monitoring for 5 years which consists of a urine test and blood tests.

I had my first ADD Lemtrada infusion in April this year. The week in London wasn’t as bad as I thought it might be and the UCLH hospital team over there were fantastic! I had the infusion with two other patients who were of similar ages to me, one is also a GP which reassured me even more. I now keep in regular contact with them both. The UCLH which is a charity hospital put you up in the ‘cotton rooms’ which is an amazing hotel. They also offer a shuttle bus to and from the hospital however I decided to walk each day after being in the ward for 5-7 hours each day.

The hardest part I’d say was the diet you must follow afterwards. I call it the ‘Listeria plus’ diet as it is similar to what you would follow if you are pregnant but much stricter. This must be followed for 3 months’ post treatment while your immune system is at its lowest. Prior to Lemtrada I also made the decision to follow a Gluten free diet. Even though there are no scientific results that diet can affect MS I have noticed the difference in myself and how I feel.

Since Lemtrada I have finally been symptom free with no relapses. My MRI which I had 4 weeks’ post Lemtrada showed ‘Virtually all lesions in the brain have reduced in size compared with the previous scans. No new lesions have appeared’. I was so happy with that scan and couldn’t believe after only 4 weeks it was showing positive changes. I am excited to see what progress the drug will have by the end of this year and in the future after visiting London again for the second instalment next April.

From October 2017 the Jersey General Hospital have now been trained and will be treating local people with the Lemtrada drug, which is great!

For anyone having doubts or concerns about the drug my advice would be to get all the information before making the right decision for you. Don’t let other people’s fears and concerns put you off. I think of it as life is too short and you sometimes have to take risks. At the moment there is no cure for MS but I do believe Lemtrada is one of the best drugs they have close to that at the moment.

Bridie Xx”

If you would like further information about Lemtrada please contact your Neuro Nurse.

Exercise Classes Please do not forget the free exercise class held at Cheshire Homes every Tuesday at 11.30, come along, it’s a good chance to socialise as well keep fit! Complementary Therapies Don’t forget that members can claim towards their alternative therapies. Forms available online or at request.

Facebook Part of the committee’s aim is to raise awareness. So please do like our Facebook Page – Multiple Sclerosis Society of Jersey - we will be posting news of our fund raising events and need as many people as possible to hear about this page.

Check out our updated website http://msjersey.org/

Communications We are always trying to reduce our administration costs and where possible would like to send you information via email. If you would like to opt in to receive by email, please send us an email on: [email protected]

Stamps Please keep any stamps from your mail as our committee member Margaret can collect them. Please let your friends and family know to keep them and to ask their places of work.

Waitrose If you shop at Waitrose or are passing please look out for the Community Matters forms at the side of the token boxes. If you could pick one up and fill it in nominating us then hopefully we will be considered.

Treasurer change of address As you know Haley has taken over from Dermot, and has recently changed address. Her new address is 2 Mahara Apartments, La Pouquelaye, St Helier, JE2 3GP. Email: [email protected] Mobile: 07797781107

Important! We really need all your completed forms even for your subscription. This is important for our records. If we do not receive a form, we will assume any money received is a donation!