From the Editor and Chair:
Roy receiving the Points of Light award
Welcome to the first Newsletter of 2017. Last year was a memorable year for the Branch when we won the Queen's Award for Voluntary Service. There were also many other enjoyable occasions, and a full calendar awaits us for this New Year.
In December another memorable event took place; our long-serving committee member Roy Middleton became the first recipient of the "Points of Light Award" for people in Solihull who have made an outstanding commitment to charity work during their lives.
The award was presented before the Christmas Lunch by the Right Honourable Julian Knight MP who is our member of Parliament for Solihull (see below).
Please make a note of a talk scheduled for April 20th. The speaker is Paul Mayhew-Archer whose television programmes on the 'Funny Side of Parkinson's' last year and earlier this month were big successes. Paul, himself has Parkinson's, and Getting him to talk to us is quite a scoop, so please come if you can.
Also note the "Moving and Handling" course for carers on February 27th. Any carer who has suffered back trouble or other problems from moving someone with advanced Parkinson's will tell you how easy it is for such injuries to occur. Hopefully this course will help carers to avoid them.
I would also draw your attention to the change of venue for our Thursday evening meetings which will now be at the Royal British Legion in Knowle (not the one in Solihull).
Please note that the Annual general Meeting this year is on March 7th. Nominations for the Committee should be sent as soon as possible to Sheila.
Holiday to Holme Lacey
In November, we celebrated Christmas early with a 'Turkey & Tinsel' holiday at Holme Lacey, the Warner's Hotel in Herefordshire. The entertainment was very good as usual. During the day there was plenty to keep us busy with quizzes and walks around the gardens.
Tree in a sock (knitted by children in Abergavenny)
Barbara and George Xifaras enjoying a stroll in Abergavenney castle grounds
There were two coach outings: one to Abergavenney (a trip that was aborted the last time we went to Holme Lacey because of torrential rain). The weather was good this time and we had a lovely day in this interesting town with its ruined castle. The other trip was to Hereford where we visited the lovely cathedral.
John Wilson tackling a few desserts. Margaret said:
The food was excellent and (as you see) some of us couldn't get enough of it! 'Balloon fights" were enjoyed (in the dining room) by some, who became expert at blowing up the sausage-shaped balloons and letting them go in the direction of their opponents. Many balloons were trapped up in the coving and are probably still there today! The rest of us tried to maintain some decorum but failed abysmally.
Maggie and Margaret C
Note from the Social Secretary
Margaret C is planning a holiday to Nidd Hall on May 1st and urges anyone who has not been away with the Branch to join us and enjoy the company and friendship on offer. All our group have Parkinson's or are carers or ex carers, so know first hand the problems of coping 24/7 with Parkinson's.
This year the Christmas party was held at the Municipal Bowling Club. The food was very good and we were entertained again by the Misty Duo. It proved to be a very successful event.
Points of light Award ceremony
Some of the committee with Roy and Mr Knight
Roy Middleton was awarded the Points of Light certificate and a bouquet of flowers by the Right Honourable Mr Julian Knight MP on December 10th at the Arden Hotel. Roy was unaware of the award prior to the event and it was difficult to keep the secret but Margaret C managed to keep him occupied - labelling the raffle prizes, until the appointed time. Mr Knight, who arrived a little early, had a coffee near the entrance to the hotel so that Roy would not see him. Many of the members also arrived early before the lunch, to give Roy their support.
Part of the citation was as follows:
Roy and his wife, Janet, worked as volunteers for Age Concern for 20 years. This involved visiting elderly persons, doing shopping and taking people for appointments. In 2004 Janet was diagnosed with Parkinson's and they joined Solihull Branch of Parkinson's UK. Janet died in 2008 and Roy joined our committee. He has incredible energy, especially for a 90-year old. As an indefatigable member of the committee his responsibility is organising day care. In addition he collects members' contributions every week at our exercise classes, keeps records of those attending, and deals with any issues that arise. He keeps us up-to-date with the health problems of members, ringing any that have not been seen at our activities for a while, and visits those that are in hospital. He is the first to volunteer when anything crops up that does not fall within another committee member's remit. He supports most of our functions and events, and is a most valued member of the Branch, giving his time and energy wherever it is needed.
Commenting on the award in the press, Julian Knight said:
I was delighted to be able to offer this recognition of Roy's extraordinary record of service to our community. Men and women like him are the backbone of so many services that residents depend on, and I'm glad to give something back.
One of the most rewarding parts of being an MP is the opportunity to meet so many extraordinary people in our town, and 'Points of Light' is my way of discovering and rewarding their contributions.
Some of our well-known members
Ninety four guests enjoyed Christmas lunch at the Arden hotel. It was again a geat success. The food was excellent and the Hotel staff were most helpful as usual. The tables looked lovely and the meal went off without a hitch.
Knowle Male voice choir
Knowle Male Voice Choir
Some of us attended a Christmas concert given by Knowle Male Voice Choir in aid of our Branch at Dorridge Methodist Church on December 10th. They sang a lovely, extremely varied repertoire of seasonal and other songs. The performance raised over £800 for the Branch.
The choir also raised a further amount by carol singing at John Lewis, two care Homes, and a pub. The total amount they are donating to us is a fantastic £1100. We are extremely grateful for this incredible amount of funding that will be put towards our day-care provision, that enables carers of individuals with advanced Parkinson's to have a break.
1. Deep brain ultrasound therapy used to treat tremor
A research team at Imperial College are testing the use of high-intensity, focused ultrasound waves to treat tremor. It is being tried in people with a condition called 'essential tremor', but the team hopes to be able to start trials in people with Parkinson's soon.
Focused ultrasound uses multiple beams of ultrasound. Each individual beam passes through tissue harmlessly, but at the focal point where the beams (from different directions) are made to intersect (ie the target) the energy becomes intense. In this case the target is the part of the brain that produces the unwanted signals that cause tremor.
Deep Brain Stimulation (DBS) can help to control tremor and involuntary movements (dyskinesia) in Parkinson's, but it requires invasive surgery. The ultrasound therapy could provide similar benefits to DBS, but without the need for brain surgery. Thus it offers a new and promising tool for treating tremor.
2. Targetted release of a Parkinson's drug in the brain
Parkinson's drugs are normally taken by mouth. The problem is that a large proportion of the drug is broken down in the bloodstream before it gets into the brain. So sufficiently high doses have to be given to ensure that enough gets there.
A team in New Zealand have developed a new method of delivering a drug (apomorphine) used in Parkinson's more directly into the brain. The method involves incorporating the drug into fat particles know as liposomes and injecting the liposomes containing the drug into the bloodstream. The drug, when present in the liposomes, is not broken down in the blood. The patient's head is then exposed to ultrasound waves which cause the drug to be released from the particles near the brain where it is taken up. Therefore it does not need to be given in high doses. Furthermore other tissues in the body will not be exposed to it, thereby minimising some of the side-effects of the drug.
3. More evidence that Parkinson's starts in the gut
It is known that many people with Parkinson's experience problems in their digestion – such as constipation – often before their problems with movement appear. New research supports previous studies that indicate the first changes in Parkinson's may occur in the stomach or large intestine before spreading to the brain.
The research from a team in Alabama shows that an abnormal protein found in the brain in Parkinson's, if introduced into the gut, can move from the gut to the brain. The discovery adds to growing evidence that suggests Parkinson's may actually start in the gut. The abnormal protein is present in Lewy bodies, which are the protein clumps that form in the brain in Parkinson's. It is an abnormal form of a protein called 'alpha-synuclein'. The research team used mice to study the movement of the abnormal protein.They injected a synthetic form of it into the gut of mice and then used a state-of-the-art technique to track its movement. After 60 days, they found that the protein had travelled from the gut to the part of the brain affected in Parkinson's.
If Parkinson's really does start in the gut, understanding how this protein gets to the brain could be key to finding ways to stop the disease progression.
4. An inherited late-onset form of Late-onset Parkinson's
In about 95% of individuals with late-onset Parkinson's the condition is sporadic, i.e. it can occur in families with no previous history of the condition, although in these cases many genes can 'predispose' those individulals to develop the condition. However inherited (familial) forms of Parkinson's account for about 5% of the cases.
Mutations in a gene known as LRRK2 are one of the most common causes of late-onset inherited Parkinson's. This gene encodes proteins involved in the phosphorylation of other proteins. Mutations in the LRRK2 gene can cause these proteins to be more active than normal. A research team at Dundee University has identified a simple way to measure the activity of one of these proteins. It seems possible that reducing its activity may help people with this form of inherited Parkinson's.
The researchers believe this finding could be turned into a simple test to identify people where overactive LRRK2 plays a role in their Parkinson's.The new discovery could also lead to a new type of treatment that tackles a root cause of Parkinson's rather than simply reducing the symptoms.
This is a teaching and learning approach to Parkinson's disease that aims to improve quality of life. Skills and practical techniques are learned for overcoming the daily problems posed by this condition. It takes place at The National Institute of Conductive Education in Moseley and is not under the National Health Service.
If anyone is interested in starting Conductive Education please contact Barbara Xifaras who is normally at the exercise class on Tuesday mornings or send an e-mail (firstname.lastname@example.org). If you already attend Conductive Education and would like to claim the cost of some of your sessions, please save the receipts you get from NICE and give them to me.
Two exercise classes take place on a Tuesday morning with a 30 minute coffee break between them. Please contact Barbara Xifaras (Tel: 01564 773977 mornings only) for more information.
Chair-based yoga classes are held on Friday mornings at 11.30am - 12.30pm in the Library in Solihull. The classes cost £2.50. Non-members are welcome to attend.
Tai Chi classes - New Initiative
Tai Chi sessions are held every Thursday at 11.45 am at the Solihull Women's Institute on the Warwick Road (opposite the House of Fraser). The cost is £2.00 per session. Non-members are welcome but the charge for them is £3.00 per session. Tai Chi has been recommended by GPs in the area and by the Parkinson's nurses, as a beneficial activity for people with Parkinson's. Jan Wilson, the instructor, teaches a type of Tai Chi which has been designed for people with movement disorders such as Parkinson's and arthritis.
Speech Therapy classes - new initiative
This year we have started a speech therapy course which is from 10.00am to 12 noon on the second Wednesday of each month in 2016. The course which is limited to 8 members is organised by Integrated Treatment Services. It is already full and we have a short waiting list. If you are interested let me know and I will put you on the waiting list. Whether we can run more sessions will depend on the interest and our finances.
Help for Carers
Remember that we can pay for members with Parkinson's to spend a day, once a fortnight, at Blanning Day Centre in Bentley Heath. However, as this facility is meant for the benefit of carers to give them a rest from their caring duties, we insist that both the carer and the person attending the care centre are members of Parkinson's UK.
We also help to pay for a sitter service by paying 50% of the cost of up to two three-hour sessions per month, providing the actual cost does not exceed £17.50 per hour. If you let us have your receipts we shall reimburse you. We recommend AgeUK as a reputable sitter agency.
The Branch currently pays taxi fares (one way) to the exercise class for those members who are disabled and have no other suitable means of transport. We intend to extend this to also cover Thursday evening meetings and the Christmas lunch. However, receipts must be provided.
Is your membership up to date?
Is your membership up to date? Please look at your membership card. You are not entitled to the benefits of membership if you are not an up to date member. If your membership needs renewing, write or ring the National Office: Parkinson's UK, 215, Vauxhall Bridge Road, London SW1VEJ. It costs only £4 per year. (Tel: 020 7931 8080). Please check your card now.