From the Editor and Chair:
Welcome to the August Newsletter. Our programme of activities has continued since the last Newsletter with a very enjoyable Summer lunch at the Crown Plaza, and a most enjoyable visit to Hobson's Brewery, and the Annual day out which was to the Cotswolds, and, as usual, a very successful skittles afternoon with buffet.
Alan and Tim Enjoying a free pint at Hobsons Brewery
The Regional manager for Parkinson's UK for this area (Emma Cooper) has sent a statement regarding Norma's legacy and this is reproduced here.
I want to take this opportunity to remind you of the new initiatives we have been able to take as a consequence of the legacy left by Norma. These include a care and a sitter service which we hope people will take up. At the day care centres we patronise you will have an enjoyable day with a variety of activities and your carer will have a break. We know that in some cases, carers are exhausted, trying to do their best for those they love, so please give this careful consideration.
You can also try some alternative therapies at the Branch's expense to see if they will help you to deal with your symptoms. A flier outlining this initiative will be available shortly.
Please note that the singing therapy sessions, Parkin'sings, are taking a break over the Summer. The new season starts at 9.45 am on Monday 3rd September 2018.
Lined up for the rest of the Summer is a special lunch at the Regency hotel to commemorate Norma Hone who recently left us a generous legacy. We hope as many people as possible will join us for this notable occasion. If anyone has photographs of Norma and/or her husband Raymond enjoying the activities of the Branch, I would be grateful if they would lend them to us as we hope to construct a poster with highlights of their involvement in the Branch.
Visit to Hobson's Brewery
The trip to Hobsons Brewery in Cleobury Mortimer on 6th July was a great success. We took a coach from Solihull, picking up people at Kidderminster Station en route. The weather was perfect and the beer was great.
The brewer gave us a tour of the brewery, and supplied us with hot dogs, burgers and salads - and free beer all evening! He also provided four raffle prizes, two of which were won by members of our branch!
The sale of 42 seats, the raffle, and a collection on the coach on the way back raised just over £1,000 - all of which is to go to the Solihull Branch!!!
Trip to the Cotswolds
The annual outing this year was to the Cotswolds on Tuesday 7th August - one of the hottest days of the Summer. Another great day was had by about 36 of us. Our first stop was to Moreton on Marsh where it was a very busy market day.
There we had time to walk around and have a coffee or do some general sight-seeing. Then we went on to Bourton on the Water.
The hot weather ensured that the riverside cafes and pubs were kept very busy.
The children were obviously on holiday and they (and some adults) were enjoying themselves splashing about in the river. This was another successful outing organised by Margaret Clavin.
1.The trip to Hobson's Brewery organised by Martin (see below) raised over £1000 for the Branch.
2. 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
1. Deep brain stimulation
Deep brain stimulation (DBS) is surgical therapy that may be considered during the course of Parkinson's, especially if symptoms cannot be adequately controlled with medication. However, DBS can ease symptoms but does not change the underlying course of the condition.
DBS is not suitable for everyone. It is usually done in people who have had Parkinson's for at least four years and still get a benefit from medication, but have motor complications, such as significant "off" time (periods when medication isn't working well and symptoms return) and/or dyskinesia (uncontrolled, involuntary movements). DBS typically works best to lessen motor symptoms like stiffness, slowness and tremor. It doesn't work as well for imbalance, freezing when walking, or non-motor symptoms. Furthermore DBS may even exacerbate thinking or memory problems, so it is not recommended for people with dementia. In appropriately selected people, it can be very beneficial to lessen symptoms and medication requirements, as well as to decrease certain side effects of drug therapy.
A neurologist trained in Parkinson's and a neurosurgeon who performs DBS procedures will make an in-depth assessment consisting of a medication and symptom review, examination of the individual both on and off Parkinson's drugs, and brain imaging. They also usually discuss the expected benefits (e.g., decreased tremor, less medication, etc.) and the potential risks of the surgery, including bleeding, stroke and infection.
In DBS surgery, thin wires, called electrodes, are placed into one or both sides of the brain in specific areas that control movement. The person may remain awake during the surgery so that they can answer questions and perform certain tasks which helps to make sure that the electrodes are positioned correctly. However, some medical centres (including the QE hospital in Birmingham) use brain imaging to guide the electrodes to the right spot while the patient is asleep.
The electrodes are connected to a stimulator (a battery-operated device similar to a cardiac pacemaker) that is usually placed under the skin near the collarbone. This device delivers continuous electrical pulses.
A few weeks after surgery, a hand-held programmer is used to set the parameters in the stimulator. These are tailored to each individual's unique set of symptoms. The settings are gradually tweaked over time and medication is simultaneously adjusted. Most people are able to decrease (but not completely discontinue) Parkinson's drugs after DBS. Determining the optimal combination of drugs and stimulator settings that give the most benefit and the least side effects can take several months.
Exactly how DBS works in Parkinson's is not completely understood. It is believed to regulate the abnormal electrical signalling patterns in the brain, to allow the nerves to communicate more smoothly.
2. Atypical Parkinsonism
There are several conditions in which the individual experiences some Parkinson's symptoms such as tremor, slowness, rigidity (stiffness), and/or walking and balance problems, but do not actually have Parkinson's. These conditions are collectively known as atypical parkinsonism. They can be due to other neurological disorders, certain medications (eg some anti-nausea and antipsychotic drugs), or other brain disorders (eg repeated head injury or multiple small strokes).
A poor response to L-DOPA, the main medication used in Parkinson's, development, other symptoms, and more rapid progression of disease may eventually lead to a true diagnosis but it can take years. Like Parkinson's no cure has yet been discovered for any of these neurodegenerative conditions.
The atypical conditions are:
Corticobasal Degeneration (CBD)
This leads primarily to motor and cognitive (memory/thinking) symptoms. Motor symptoms mainly affect one arm and/or hand and include slowness, stiffness, rapid muscle jerks, and an abnormal, fixed posture (dystonia).
The dystonic posture may cause the arm to be held close to the body and bent at the elbow and the wrist and fingers to be flexed toward the palm. Dystonia can cause pain and palm sores and make regular daily activities (such as brushing teeth or preparing meals) difficult. Cognitive problems affecting speech, memory and/or behaviour can be present. Performing complex motions, such as combing hair or turning a key in a lock, challenging or impossible. People with CBD may also experience "alien limb phenomenon," which is involuntary activity of a limb and a feeling that the limb is foreign or has a will of its own.
Lewy Body Dementia (LBD)
This is a form of dementia associated with Parkinson's and typically occurs early in the course of disease. It involves motor symptoms of Parkinson's (stiffness and slowness) and significant impairment of thinking and/or memory that interferes with daily activities. Additional symptoms may include visual hallucinations, unpredictable fluctuations in attention and mood, and behavioural and personality changes. Sleep disorder, and postural hypotension (a decrease in blood pressure when changing positions, that can cause dizziness or fainting, are other common symptoms.
Multi- System Atrophy (MSA)
In this condition patients may experience slowness, stiffness and walking/balance difficulties (but not tremor), slurred speech, and autonomic nervous system problems such as abnormal blood pressure regulation, bladder emptying and sexual function.
Other features of MSA include abnormal postures (head and neck tilted forward, hand held in a grasping position, or foot and ankle turned inward), speech and swallowing problems, episodes of uncontrolled laughter or crying, cognitive (memory/thinking) problems, and sleep disturbances.
Progressive Supranuclear Palsy (PSP)
This condition causes imbalance, gait difficulties and a tendency to fall backwards. It also restricts normal eye movements, which can lead to reading difficulties, falls when walking down stairs and visual disturbances (blurred or double vision, or light sensitivity) or involuntary eyelid closure (blepharospasm). Memory and behaviour changes and speech and swallowing problems may also occur.
Management of Atypical Parkinsonism
These diseases are complex conditions that progress over time. L-dopa is usually the first therapy for motor symptoms, although most people do not get a significant or long-term benefit. Walking aids are eventually necessary. Dystonia can be treated with Botox injections and for non-motor symptoms a variety of other medications may be prescribed. Physiotherapy can be beneficial for dystonia, gait and balance problems. Speech therapy can help speech disturbances and swallowing problems.
3. New Diagnostic Test for Parkinson's
A recent brief newspaper article reported that a team of Israeli scientists in Haifa have developed a breath test for detecting Parkinson's at an early stage in the condition. It has apparently been shown to be almost as effective as a brain scan, i.e. with over 80% accuracy. We await more details of this test.
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 £4.00. 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.