Parkinson's UK Solihull Branch

News

 

 

From the Editor and Chair:

Hello everybody. It has been a very busy few months since the last Newsletter. So much has been going on lately that I have had to be selective in what I include in this Newsletter. A memorable holiday to Littlecote house and a lovely weekend at Studley Castle and a great day at Trentham Gardens stand out for me. We were actually blessed with good weather on all three occasions despite the many wet days there were this Summer. Another highlight was the Art Exhibition which was organised to promote the branch and judging by the amount of interest it was very successful. We also had a successful Summer Lunch at the Crowne Plaza, a Sunday afternoon walk, and a skittles event. .

The Needles
Roses Blooming in Trentham Gardens
Amanda en route
Amanda En Route to the Gardens

On another note, we are fortunate to have two new committee members who are already proving their worth - profiled below.

Maggie Smith

 

New Committe Members

Alexe



Alexe Parker has joined the Committee as our new secretary. Alexe has a professional back ground in domestic insurance, and voluntary experience as secretary for Guiding UK and church groups. Alexe met several members of the Branch when she joined our holiday last spring. She related to this as her mother-in-law lived with Parkinson's for the last 15-20 years of her life.

 

 

Carly



Carly Wilkes has joined the Committee as Events Coordinator, reducing our average age by a considerable amount. Carly is originally from Cornwall, but has been living in the Midlands for the last 8 years. She is a Human Resources Manager for Enterprise Rent-A-Car. Carly's Dad, John, was diagnosed with Parkinson's a number of years ago and as he lives in Cornwall, she was keen to support a Parkinson's group local to her.

 

 

 

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Events

Holiday to Littlecote House

26 members and friends enjoyed the holiday and refused to let a very unfriendly coach driver spoil it. Margaret Clavin's position as organiser was made more difficult by his attitude.

The Needles
Littlecote Wisteria
The Needles
Enjoying Dinner
THe ferry from Yarmouth
The Earth, Salisbury Cathedral

 

The food choices for breakfast and evening meals were excellent as were the facilities and gardens. The Roman ruins and mosaic were a trip into our past and history. I went into the haunted bedroom and asked if anyone was there; I was very relieved that no one answered.

The Wisteria outside one of the entrances to the house is 120 years old and the flowers were 3ft long!

Waiting for the Driver

A day out in Salisbury was a success and the Cathedral was well worth the visit. The model of earth in the Cathedral was for the Towns International Festival of Art and it represents the earth looking from the NASA satellite. Another day out was to Bath, some members went on a sightseeing bus and others did their own thing. I enjoyed listening to the various buskers. It was a very successful holiday, well organised as usual by Margaret.

Lionel

Walk in Brueton Park

A leisurely walk in Brueton Park on a Sunday afternoon in July was enjoyed by some intrepid members, with expert information on the trees given by the tree wardens as usual.

 

 

 

Overnight at Studley Castle

A lovely weekend with an overnight stay at Studley Castle was enjoyed by 33 members. The Castle is now a Warners hotel. The food and facilities were excellent. The day trips to Burton on the Water (Sunday) and Stratford on Avon (Monday) were blessed by gorgeous sunny weather. The whole event was lovely.

The Needles
The Castle
THe ferry from Yarmouth
Sand Dancers

 

Maggie

Art Exhibition

The Branch recently held an "Art of Parkinson's" exhibition , which took place between 18th June and 2nd July at the Gallery in the Core, Solihull Arts Com plex.There were a total of 93 submissions, from paintings, photos, embroidery, card making, drawings and more!

The entries were from Branch members, members of other branches, people who know someone with Parkinson's and those who have supported the Branch in different ways.

There were a total of 93 submissions, from photographs, paintings, crochet, embroidery, card making, drawings and more!

The entries were from Branch members, members of other branches, people who know someone with Parkinson's and those who have supported the Branch in different ways.

The actual presentation in the Gallery looked really professional!

Over the two weeks around 450 people came into the gallery, including the artists, their families, and others.

Some of the Exhibits at the Core

The overall intention was to use a different environment to encourage people to talk about Parkinson's, this was also aided by the information displayed with the works, which gave added meaning to them.

Overall, the exhibition was well received; it got people talking about Parkinson's, and how art can help raise awareness of Parkinson's.

Martin Sewell

Summer Lunch

Over 80 members attended the Summer lunch at the Crowne Plaza. It was successful in the main although there were complaints about one dessert dish. Otherwise it was very enjoyable.

Maggie

Trentham Gardens

After a wet departure and severe weather whilst we were on the coach, the weather changed for the better and a beautiful day was had by all. There were more shopping outlets than when we were last there, to the delight of some members!

The train along the lake and the lake ferry were kept busy. I went to the monkey forest; seeing the very young monkeys being carried on their mothers backs whilst they climbed the trees with them was a special treat.

 

Monkeys
Meet the Ancestors
THe ferry from Yarmouth
Exhausted but Happy

 

 

Fundraising

We have received a donation from the will of Mr Richard Horfield who left £6000 to be donated to charities of the executor (his daughter)'s choosing. It will be shared between Solihull Branch and another Branch of Parkinson's UK

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Science Report

1. Parkinson's Medication and Diet

Side Effects

Parkinson's medication may cause, nausea and vomiting, diarrhoea or constipation, low blood pressure, dry mouth, or tiredness.Side effects of Parkinson's drugs may interfere with the appetite, which may lead to the individual eating and drinking less. If they interfere with normal appetite, a dietitian could advise on how to manage the symptoms. NB. Indigestion and heartburn: Antacids should not be taken at the same time as Parkinson's drugs as they may interfere with their absorption.

Nausea

Some people with Parkinson's may feel sick after taking medication, especially if they take it on an empty stomach. Having a snack, such as a plain cracker or biscuit, at the same time as the medication, or taking medication with plenty of water can help to reduce the nausea. Anti-sickness tablets may be prescribed by the GP

Effects of Protein

For some people with Parkinson's, protein (which is found mainly in meat, fish, eggs, cheese, beans and pulses) seems to interfere with how well levodopa is absorbed by the body. Because of this, taking the medication 30 - 60 minutes before a meal may help. Protein is essential for a healthy diet so you should not stop eating protein altogether as it is vital to help the body renew itself and fight infection. Reducing protein may cause dangerous weight loss.

It may be helpful to reduce the amount of protein eaten earlier in the day which may help to increase the response the body has to the medication and avoid unpredictable motor fluctuations. Eating the main protein meal in the evening may also be beneficial, as a slower response to medication may not be as important as at other times of the day.

If you do wish to review the timing of your protein intake, you should talk to your GP, neurologist or Parkinson's nurse, or ask to see a registered dietitian.

Vitamins

Eating a well-balanced diet is important for health. Many vitamin deficiencies have been reported to be involved in the development of Parkinsons' but there is no clear scientific evidence for most having any health benefits in the condition, with the exception of vitamin D.

Vitamin D is beneficial because osteoporosis is often diagnosed in those with Parkinson's. Osteoporosis is a condition that affects the bones, causing them to become weak and fragile and more likely to break. Vitamin D deficiency, leading to calcium deficiency, may cause osteoporosis. Furthermore increased severity of Parkinson's symptoms is linked to reduced bone density. Those who are bed-bound or house-bound or are immobile, may be most at risk because most of our vitamin D comes from exposing of the skin to sunlight. Speak to your doctor if you think you may need to take vitamin D or calcium.

2. Young Onset Parkinson's disease (YOPD)

Young Onset Parkinson's disease (YOPD) occurs in people under 50 years of age. Most people with idiopathic, or typical, Parkinson's develop symptoms at an older age. YOPD affects 2 - 10 % of people with Parkinson's. The symptoms are similar to those in late onset Parkinson's. NB. In rare instances, Parkinson's-like symptoms can appear in children and teenagers, when the disorder is called juvenile Parkinsonism. This is often associated with specific, genetic mutations which confer a high risk of Parkinson's.

Symptoms

YOPD is diagnosed similarly to late onset Parkinson's with the same motor symptoms and the same non-motor symptoms as others with Parkinson's.

Differences between young onset and late onset Parkinson's.

People with YOPD more frequently have a family history of Parkinson's. They may experience slower progression of Parkinson's symptoms. There may also be more side effects from dopaminergic medications, and more risk of cramps).

It is important to emphasis that people with YOPD often have different social problems than those with the late-onset form. Thus they may be at a different stage of their career and often have less time to engage in their own care. They may also have children or are planning to have children and may worry about passing on Parkinson's genes.

Therapy and Treatment

People with YOPD have a significantly greater risk of developing dyskinesias or involuntary movements as side effects of carbidopa/levodopa (the drugs prescribed most often to treat Parkinson's) and motor fluctuations, and more frequent dystonias (cramping and abnormal postures) such as arching of the foot when taking levodopa. Each person's treatment is unique and can require fine adjustments of multiple medications. NB. Deep brain stimulation remains a surgical option for people withYOPD.

Possible Causes

For most people with Parkinson's, the disease is caused by a combination of underlying genetic predisposition and environmental exposures. But genetics plays a larger role in YOPD.  People who have both YOPD and a strong family history of the disease are more likely to carry genes linked to Parkinson's (such as SNCA, PARK2, PINK1 and LRRK2), although some people with these genes may not develop Parkinson's disease at all.

Theoretically, genes may play a larger role in young-onset Parkinson's, while environmental factors may play more of a role in sporadic Parkinson's, but so far research workers have found this hard to prove.

 

3.Having Surgery When You Have Parkinson's

Many people with Parkinson's need surgical procedures to treat other conditions. These range from a minor knee replacement to a major heart procedure. Surgery, like every therapy, has possible benefits and side effects. Parkinson's symptoms can temporarily worsen after any surgery. This can be due to the surgery or the anaesthesia, being in the hospital and not moving as much, being off Parkinson's medications for a short time, or a combination of factors.

Whatever the surgery, the following tips posted by Dr Rachel Dolhoun of the Fox Foundation may help you recover more quickly:

  1. Discuss the potential benefits and risks of surgery with your Parkinson's doctor and surgeon. Make sure you clearly understand the pros and cons of your specific procedure. Some surgeries, such as a knee replacement for pain that limits mobility and exercise, may have benefits for Parkinson's. Even though you might have a brief worsening of symptoms, there will probably be overall positive results in the long run
  2. Ask about the best timing and technique for surgery. It may be possible to schedule surgery in the early morning to avoid being off Parkinson's medications for long periods. (Many surgeons and anaesthetists ask you to stop all drugs at midnight prior to surgery but, whenever possible, see if you should continue your Parkinson's medications right up until your procedure.) Also, see if you can avoid general anaesthesia, which puts you to sleep. Doctors can do some procedures with local or regional anaesthesia, which numb only one or a few body parts. This can lessen potential side effects such as confusion and recovery times. And if you are awake, you may even be able to continue your Parkinson's medications during the procedure. Talk with your doctors about whether these options could work for you.
  3. Plan ahead to reduce recovery time.To minimise any deleterious side effects of surgery:
    • After surgery, restart your Parkinson's medications as soon as your doctor agrees
    • Avoid drugs that can temporarily worsen movement symptoms (eg some of the pain or anti-nausea drugs). Remind your doctors and nurses you have Parkinson's and always ask if a medication could affect your symptoms and if so, is there is a better alternative.
    • Get moving, with physical or occupational therapy, as soon as possible. Starting some type of exercise early, even if you cannot stand or walk on your own, can speed recovery
    • Always talk to your own doctors about any treatment considerations, as everyone's Parkinson's is unique.

    Maggie

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    Home from Hospital Care

    If you have a spell in hospital and need help when you get home, you may be interested in the charity "Home" from Hospital Care. This is a voluntary organisation which "tries to make the transfer from hospital to home as smooth as possible so that patients have the best chance of making a good recovery". These volunteers work with adults and visit patients at home - every week for up to 6 weeks. They do not offer personal care or cleaning but will, for example, help with shopping or sit with you to give your carer a break. To see more about this organisation see their website www.home-from-hospital-care.org.uk. Their Main Office phone number is: 0121 472 4499.

    Margaret Wilson

    Branch Facilities

    Conductive Education

    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 us. 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 Dorothy.

    Exercise Class

    Two exercise classes take place on a Tuesday morning with a 30 minute coffee break between them. Cost per class is £2.00. Please contact Lionel or Roy for more information.

    Yoga classes

    Chair-based yoga classes are held on Friday mornings at 11.30am - 12.30pm in the Library in Solihull. The classes cost £4.00.Please contact Roy if you are interested in joining the class. Non-members are welcome to attend.

    Singing Therapy

    Singing therapy sessions are held once a week at 9.45am - 10.45 am on
    Mondays at John Palmer Hall, United Reformed Church, Warwick Road, Solihull
    B91 3DG, (opposite House of Frazer). Contact Martin Sewell for more information.

    Complementary Therapy

    Recently a note was circulated to all members of Solihull Parkinson's Group bringing to people's attention that, as part of Norma Hone's legacy, the Branch is offering to contribute £20 a session for a maximum of three sessions for members with Parkinson's to try out complementary therapies. If you have any questions please speak to Richard Nelson.

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    Help for Carers

    Day Care:

    Remember that we can pay for members with Parkinson's to spend a day,
    once a fortnight, at Blanning Day Centre, Family Care Trust, in Bentley Heath,
    or at Shepherdson Court Day Centre, Damson Parkway, Solihull. 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. Contact Roy for more information.

    Sitter Service:

    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.

    Taxi fares:

    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. However, receipts must be provided.

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    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.

     

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