From the Editor and Chair:
Pupils at St James School at the Black Country Museum waiting with trepidation for the teacher to give them a taste of school life at the beginning of the last century
Welcome to the September Newsletter which is late this quarter because your editor has had too many holidays. Through the Summer we have had several events. One memorable highlight was the trip to the Black Country Museum, which was very impressive.
The Branch has three new Committee members who have brought new expertise to your committee and will hopefully provide a fresh insight. At last we have a new secretary, Tim Mason. Richard Nelson is Assistant Treasurer and Martin Sewell is the Young Parkinson's Group representative.
There are several changes to report; this month we shall be starting a new singing therapy class for members on Monday mornings (see details below). We have also decided to trial some of our talks on Saturday mornings instead of Thursday evenings, so that members will not have to venture out at night. In addition the Young Parkinson's Group, organised by Martin Sewell, are holding talks every second Saturday in the month. Everyone is welcome to attend these sessions which will usually be relevant to all people with Parkinson's whatever their age. The details of the next few meetings are given in the Calendar.
Unfortunately we have discontinued the Tai Chi sessions due to lack of support. This is disappointing as Tai Chi is recommended by the Medical profession as beneficial in Parkinson's.
New Committe Members
Tim Mason has joined the committee as Secretary.
Prior to his retirement he spent his working career as Group Secretary of Public Companies specialising in corporate governance and statutory compliance
He and his wife Jan have three children.
He was diagnosed with Parkinson's six
Richard Nelson has joined us as Assistant Treasurer.
Richard is a qualified accountant and was Controller of Audit for an international oil and gas company.
He also spent several years training auditors for a number of European governments and companies. He and his wife Margaret have two children. He has had Parkinson's for several years.
Martin Sewell is our representative for (relatively) younger people with Parkinson's. He is a retired policeman. He has had Parkinson's for many years and has worked as a volunteer for Parkinson's UK for several years, including a role as volunteer educator. He is married with three children.
New Initiative: Singing Therapy
A fortnightly singing therapy session for people affected by Parkinson's will commence this month with the intention of helping those with Parkinson's to have more control over their voices with increased volume. This together with social interaction should lead to greater self esteem.
The sessions will be held at Solihull United Reformed Church , Warwick Road, Solihull town centre.
The Branch has many members with severe speech difficulties. Singing has been shown to help enormously in projecting the voice, and in helping affected individuals to communicate. The project will create a pleasant environment for these members and their carers to meet and enjoy singing and socialising with others in their situation. It is hoped that it will help to improve their health and mobility, which in turn will generate confidence, and reduce their vulnerability. Please contact Martin Sewell or Chris Hughes for further details.
Skittles and Buffet Lunch
On arrival at the skittles venue (on July 20th) we had tea or coffee before the buffet. What a surprise we all had when Margaret and John Wilson arrived with their three grandchildren Rosie six, Lucy eight, and Isabel eleven. They were on holiday from America. They were so full of life and fun that very soon we all got in the party mood.
After a most delicious buffet, with more choices than you could imagine, the fun really began. The girls helped with the woods, collecting and handing them to the players and cheering us all on whatever our efforts.
Rosie, Isabel and Lucy
We all enjoyed our turns at bowling and there was much clapping when Lucy had a strike with her second wood, and then a five with her third. Naturally, this meant she won the prize for the best personal score and helped her partner to win best team. She selected the chocolate fingers as her prizes and gave one box to her sisters to share. In all, it was a very happy afternoon and I'm sure we all went home in good spirits.
Talk: How to overcome stress and anxiety
Mary Heath, a stress management consultant therapist and life coach gave us a very interesting and useful talk on coping with stress. It included many practical strategies such as breathing techniques and exercises to reduce anxiety.
Visit to the Black Country Museum
A coach party set off from Solihull Methodist Church on Tuesday 8 August to the Black Country Living Museum. The weather was wet but it didn't dampen our spirits. Upon arriving a member of the museum came aboard the coach to give us information on the different areas. When we got off the coach it had stopped raining so we went off to explore the grounds. Margaret, Diane and I went into the cottages which brought back memories of childhood, growing up with the smell of coal fires and the heat. You forget over the years.
The Bottle and Glass Inn
The Wesleyan Gospel Car
While we were waiting for the ladies a man drew a white chalk line across the road. Children asked what the line was for. The man replied 'wait and see'. A few moments later we found out. There were two lines a few yards apart and four girls and boys stood at the start line with an egg and spoon each. They had to race to the other line, put the egg in a bucket, pick up another, and race back to the start and put the egg in the bucket. From the same bucket they had to pick up a small bean bag, put it between their knees and run to the line, turn round, and run back. We left the men watching this while we walked towards the canal area. When we got back the organiser got the moms to enter a race. Fun to watch.
Some of our members went 'down the mine', or had a lesson in the school and others sampled the fish and chips.
The rain kept off all afternoon, just one very short shower. When we were settled on the coach and homeward bound the rain started again. We were very lucky.
Photos by Lionel Humphries
Angela with her daughters and granddaughter
In August we congratulated Angela Eastwood on her eightieth birthday. Angela's daughters Jo and Kim and her grand-daughter organised a tea-party for some of the ladies to celebrate the event. The guests tucked into delicious sandwiches and cakes and scones with jam and cream, and then drank her health with a couple of glasses of fizz.
This year the annual street collection in Solihull town Centre, Dicken's Heath and hall Green Parade raised a record £972. Well done all those involved
1. Mohammad Ali, Parkinson's and Head Injuries
Arizona State University scientists, Berisha and Liss, studied Muhammad Ali's public speaking from 1968 - 81. They found that he began exhibiting signs of slowed and slurred speech in his early to mid-30s, several years before he was diagnosed with Parkinson's (at age 42). The rate of syllables per second at which Ali spoke slowed by 26 percent from age 26 to 39. He was slurring his words by 1978 - three years before his retirement from boxing and six years before his diagnosis of Parkinson's. Such changes have been shown to be among the first symptoms for many who develop the condition.
The study also traced the correlation between the punches Ali received in his fights and the pattern of speech deterioration. After going 15 rounds with 'heavy-hitter' Earnie Shavers in 1977, during which Shavers struck Ali with 266 punches, his speech slowed by 16 percent from the pre-fight rate. Although Ali's speech recovered to a degree with time after a fight, the overall pattern was one of steady decline.
The same research workers compared the language usage over eight years of American National Football League players, with those of the League's executives and coaches who had never played professionally. The players were significantly more likely to show signs of deterioration in their vocabulary and sentence complexity.
Muhammad Ali in his 1977 title bout against Earnie Shavers. The study found that Ali's speech slowed by 16 percent after this fight. Ali died in 2016 at age 74.
Other than through autopsies, there is no definitive test for diagnosing chronic traumatic encephalopathy (CTE), the degenerative condition that is most associated with brain trauma among athletes. CTE has been linked to degenerative conditions such as Parkinson's. The scientists say that in addition to the potential for early detection, analysis of speech is a useful tool in tracking the effectiveness of drugs and other treatments for neurological diseases.
2. Acupuncture and Parkinson's
Many individuals with Parkinson's have reported improvement in their symptoms with acupuncture. Acupuncture is a form of traditional Chinese medicine which involves the insertion of tiny needles into the skin at various places of the body. Mild electrical currents or diluted bee venom can be applied with the needle to amplify the effects of the treatment.
A recent review of 19 trials that compared acupuncture to no treatment or conventional treatment (e.g., levodopa), or compared the combination of acupuncture and conventional treatment to conventional treatment alone, indicated that acupuncture could be a supplementary therapy for PD based on the positive effects seen. However, the benefits appear to be temporary and regular treatments are necessary to sustain them.
In general, acupuncture appears to be safe and well tolerated in Parkinson's. However, standardised acupuncture protocols for Parkinson's do not exist: there are no strict guidelines on where to insert needles, whether to use electrical current, how long treatments should last, how many sessions are necessary, and how to evaluate the potential benefit. Thus further rigorous trials with standardised protocols are necessary to fully evaluate the benefits of acupuncture in the management of Parkinson's.
Furthermore side effects reported include soreness at needle insertion sites, fatigue and temporary lightheadedness. When evaluating an acupuncturist, it is important to verify that he or she has completed the required training, licensing and certification, and to ask about their familiarity with treating Parkinson's. Acupuncture could be a helpful add-on therapy for PD motor and non-motor symptoms.
3. Parkinson's and melanoma
A study from the Mayo clinic in the USA (by Dalvin et al.) indicated that people with Parkinson's have a much higher risk of developing the skin cancer melanoma, and vice versa. Patients with Parkinson's were roughly four times more likely to have had melanoma than those without Parkinson's, and people with melanoma had a four-fold higher risk of developing Parkinson's. While further research is needed into the connection, physicians treating one disease should be vigilant for signs of the other. It seems likely that common environmental, genetic or immune system abnormalities underlie both conditions in patients who have both, but more research is needed.
4. Upper Gastrointestinal tract infections and Parkinson's.
Acute and chronic infections in the upper gastrointestinal (GI) tract appear to be linked to Parkinson's disease, according to scientists at Georgetown University Medical Centre. The protein (alpha-synuclein, αS) that accumulates in nerves in Parkinson's disease, is released when an infection occurs in the upper GI tract (oesophagus, stomach and duodenum) and it induces an immune response. The findings suggest that frequent or chronic upper GI infections could overwhelm the body's capacity to remove the released αS, leading to it accumulating in the nerves. Moreover studies in animals have shown that microbes in the GI tract can induce formation of toxic aggregates of αS in the GI tract nerves, which can then travel up to the brain.
Previous research has shown that in material taken at autopsy from individuals at very early as well as later stages of Parkinson's, that the buildup of αS actually begins in the nerves of the GI tract. When expressed in normal amounts following an infection of the upper GI tract, αS is a protective molecule. The nervous system in the GI tract detects the presence of the infectious agent and responds by releasing αS which attracts white blood cells to the site where it has been released. In addition, αS produced in one nerve can spread to others thereby protecting a large area.
However too much αS - such as from multiple or chronic infections - becomes toxic because the system that disposes of αS is overwhelmed, and the nerves are damaged by the toxic aggregates that form and chronic inflammation follows. Damage occurs within the nervous system of both the GI tract and the brain.
These findings make sense of observations made in Parkinson's patients, such as the presence of chronic constipation which can develop decades before brain symptoms become apparent, and that chronic upper GI tract problems are relatively common in people with Parkinson's.
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.