www.parkinsonscambridge.org.uk

Useful information

 

 

 

Singing For Fun

 

 

 

singers

 

 

People say – “oh I can’t sing – my voice is terrible”. It doesn’t matter what your voice is like, the main thing is joining in and having a laugh with other people and you will soon lose yourself in the songs.

 

Singing has many benefits for people with Parkinson’s. The person gains better breathing techniques and increases lung capacity. Singing also helps with voice control and volume (making your voice heard) and it becomes clearer. People with Parkinson’s find that their facial muscles become less stiff as they start to relax and enjoy the feeling of letting go and start to smile and even laugh.

 

Posture also plays an important part, sitting up straight in the chair with shoulders relaxed and head upright. This helps with breathing correctly from the diaphragm and volume for the voice.

 

It is also good for the memory as we have to memorise a verse or two.


We have a group called the Nightingale Singers for People with Parkinson’s and their carers,

which takes place on the fourth Friday of the month following the normal meeting at the David Rayner Building at Scotsdales – Great Shelford.

 

The thing that has really impressed me is the enthusiasm and commitment from people and it has given them confidence in themselves.

 

We would love some more people to join us over the coming months so do contact Charles Nightingale on 01223 844763

 

Don’t forget you can practice singing in the Bathroom with the door shut!


I realise Cambridge maybe too far to travel but there are singing groups in St Ives and Ramsey or why not start a Parkinson’s singing group nearer to you?

 

Rhythm also plays an important part with movement and helps with freezing in doorways. Why not sing a song which has a good beat – i.e. John Browns Body or The Grand Old Duke of York…. It may help with your walking!!!

 

 

 

 

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Sleeping Difficulties

 

One feature of Parkinson’s Disease can be excess sleep, sometimes called ‘somnolence’.

It is thought that the mechanism or ‘switch’ that tells our brain when it is day or night does not work correctly. As well as this people with PD can become easily fatigued. We all know that getting the right amount of sleep at the right time is important to maintaining our daily lives. Sometimes an adjustment in your PD medication can help and one or two doctors may suggest medication to try to keep you awake. However good sleep habits or hygiene as it is often called are very important. General recommendations are:

 

Try to go to bed and get up at the same time every day.

 

If you have a sleep during the day it should be early afternoon, lying down if possible for about an hour. If you do suffer fatigue it is good to have a daytime rest.

 

The bedroom should be quiet, dark and not too hot or cold. Avoid watching the TV as this can be stimulating.

 

If you cannot sleep it is better to stay in bed and try to relax. However if you cannot you may try getting up and doing something relaxing until you feel sleepy again but not watch TV or go on the computer.

 

Once you get into the habit of getting up at night this will then become your regular, learned sleep pattern and subsequently be difficult to break.

 

Some people with PD may find it difficult to sleep because they are stiff at night as their bodies are low on PD medication. If you think this may be the case speak to your PD nurse.

 

 

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Handwriting difficulties

 

Many people say to me they have difficulty with writing. Often this is one of the first signs of Parkinson’s Disease and it can be frustrating and embarrassing, especially if writing out a cheque in front of someone. You can get a stamp made with your name on (just let the bank know) if you really have difficulty signing.

 

There are chunky pens, which make it easier to hold and I have recently found a pen with a hole in the middle, which you put your index finger in and this controls the writing to a degree. I bought this on the Internet from America, as I haven’t seen the pen in this country and it costs around £8 with postage and it came with refills. The web address is www.ringpen.com

 

Another way to help with writing is to either use lined paper and to write as large as possible on the line. When you see your handwriting becoming smaller, take your hand away for a few seconds and then start again. Quite a few people have said this works well. You can also put lined paper underneath your writing sheet if you don’t want to use lined paper. Basildon Bond does this. You could also try printing in capital letters instead. Do look on the Parkinson’s web site for handwriting practice. If you have a tremor then try getting a weighted wrist band, no more than ½ to 1kg. This should control your hand better so as to write easier.

 

Another alternative is to use a computer, if you have access to one. If you want to be up to date with technology an i-pad is very useful because you can touch type on a small hand held screen. The letters are bold and easy to see. If touching the screen with your fingertips is difficult there is a device that can be bought that acts like a finger, you just point the stylus [which has a soft rubber tip] onto the letter/number required. Someone showed me this the other day that he had bought for his wife who has Parkinson’s so I thought I would pass this information on. She gets on very well with it. (Thanks Mr T.)

 

Don’t forget Kindles are very handy, that’s e-reading! I don’t personally like them as I love to hold a book to read, but for people that struggle to hold a book let alone turn the pages then this may be for you and you can get a stand to put it on.

 

Hope these tips are of help. Christmas is coming, so get those Christmas lists written!

 

From Lorna Woor, Parkinson’s Disease Support Nurse.

 

 

 

 

 

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Formal Care Input

 

Some people with a long term condition such as Parkinson’s may eventually need assistance with everyday activities such as showering, dressing or preparing meals. In many situations this help is provided by a family member. However, where this is not possible, help from formal Carers, such as those employed by a private care agency can be purchased direct, or organised through the local Social Services Department.

 

The amount of help and frequency of care visits can vary from assistance with showering (for half an hour) two or three times per week or to several visits per day, each lasting for periods from quarter of an hour to one hour and including a variety of tasks, such as assistance with routine medication. A plan outlining the duration and time of visit(s) and the tasks to be undertaken is agreed and recorded when setting this up and is periodically reviewed.

 

In general, formal care input successfully supports people to happily maintain life in their own homes. However, if you have concerns about the provision of your care for example irregular provision of Parkinson’s medication (particularly if time-specific visits have been set up to assist you with this), it is worth bringing this to the attention of your care agency manager, Social Services Care Manager or Parkinson’s Specialist Nurse.

 

It has recently been brought to our attention that a few Carers were not fully completing the care time allocated, reporting that this time period included travelling time; or that they had finished all their tasks in a shorter time. We now understand that the agreed time allocated for care input does not include travelling time. Also that if your carer fully completes the agreed care tasks in less than the allocated time, he or she should ask your permission on each occasion to leave earlier than planned.

 

Parkinson’s Disease Specialist Nurse

 

 

 

 

 

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Drinking enough fluids

 

Now is the time of year when we keep asking ‘are you drinking enough?’ Here are some of the benefits of increasing your fluid intake:

·        The brain works better, you will get fewer headaches, be able to think through things more easily and have less risk of being confused

·        The heart/blood: the heart is able to pump the blood round easier. If you are dehydrated your blood can become thicker and stickier which could lead to heart attacks or stroke and your blood pressure may drop causing you to faint

·        The kidneys are able to filter the blood more effectively removing waste products and producing dilute urine

·        The bladder is able to function better, if the urine is concentrated it is more prone to infection and the salts within the urine will irritate the bladder wall leading to needing the toilet more frequently and also urgently, maybe leading to incontinence

·        By drinking enough you are helping your digestive system to prevent constipation, or at least reducing it .

So how much is enough? Everyone is individual in their water requirement. A small person who does not move from their chair all day needs less than someone six foot tall and is very energetic. TWO litres a day is a good guideline but another way to tell is by the colour of your urine. If it is dark you may need to drink some more, whilst if it is pale you are likely to be drinking enough (although I know that medication can change the colour of the urine but it can still be dark or pale.)

As well as fluids, foods such as fruit, vegetables, yogurts, soups, jelly and ice cream are all high in their fluid content and also contribute to your intake. It is a good idea to increase your water intake now so that it becomes a habit before the hot weather returns. When you are really dehydrated you can lose a sense of thirst and by already drinking well it is easier to increase your intake slightly rather than needing to almost double it.

Eileen Hale - Parkinson’s Disease Specialist Nurse

 

 

 

 

  

 

 

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BOOK BY PAUL SMITH

 

Many of you may be interested in a book of poems by Paul Smith, called “No Rhyme or Reason”.  Paul was diagnosed with Parkinson’s at the age of 33.  The book can be purchased online at http://www.noreasonforparkinsons.com/  and it is promoted by Parkinson’s UK.

 

Foreword written by Jane Asher - President Parkinson’s UK

 

This is a fascinating and important book: not only as a collection of poetry to be enjoyed and admired, but also as a telling, sometimes shocking, reminder of the fact that Parkinson’s disease can strike at almost any age. The clichéd image of the elderly, trembling man as being typical of this complex, distressing disease is firmly dispatched in this candid expression of just what it can be like to be a young person living with Parkinson’s.

I’ve been involved with Parkinson’s UK for many years now, and I am always struck by how especially tough it can be for those who are diagnosed at a young age. Anything that can help to spread awareness of the problems, thoughts and experiences of this younger age group with PD is to be welcomed, and Paul’s terrific poems do just that, in a wonderfully creative and emotive way.

I’m sure his thoughts will resonate with many others and, at the same time, raise some much needed funds for the PDS, helping us to support more people living with the condition and to move ever closer to our ultimate goal of finding a cure.

 

All profits from the book are being donated to the Society.

 

 

 

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Outside Clinic – Eye Testing at Home

 

Lloyds Pharmacy advertise the services of the Outside Clinic, Community Opticians who will provide home eye testing anywhere in the UK to any individuals, entitled to a free NHS sight test *, who are unable to attend a High Street Optician without help or assistance. Full eye examinations and eye health checks are carried out by fully qualified optometrists. They also offer a complete spectacle dispensing service. Contact Rhonda Waters, ISW, on 0344 225 3618, for a leaflet or phone 0800 85 44 77 directly to the OUTSIDE CLINIC community opticians.

 

* You are entitled to a free eye test if you are:

 

  • Over 60
  • Under 16 or under 19 in full time education
  • Registered blind or partially sighted
  • Diagnosed with Diabetes or Glaucoma Are 40 or over and have a direct relative with glaucoma (putting you at greater risk)
  • Are prescribed a complex lens.
  • Also if you or you partner receive-

Income support or Income Based Job Seekers Allowance Working Tax credit and are named on a Tax credit NHS Exemption Certificate

Child Tax Credit and are named on a Tax credit NHS Exemption Certificate.

You are named on a NHS certificate for full or part help with costs

Pension Credit Guarantee credit

 

 

 

 

 

 

 

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MEMBERS WRITE

 

 

 

Nordic Walking

 

 

I have received enormous help from Oliver Glynn’s Nordic walking at Wandlebury on Wednesdays at 2 pm – especially recommended for people with neurological and arthritic conditions.  This has improved my mobility enormously.  I can now walk unaided for 45 minutes as compared to my usual doddering on my electric scooter.  Oliver is a member of the Forever Active team and a lovely person.  His call number is 079478 35522.

 

Joyce Adams

 

 

 

 

 

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Music and movement

 

 

Following on from the article about music and Parkinson’s a few issues back, here are some more interesting items:

 

How singing unlocks the brain (in the case of Alzheimer’s) http://news.bbc.co.uk/1/hi/health/4448634.stm

Keeping body and soul in tune – article by Alice Wignall on how singing is good for your health Guardian 28 August 2008.

Music therapy for people with PD

http://www.wzzm13.com/news/story.aspx?storyid=94196&catid=2

 

If you are interested in giving singing a go (apart from in the bath!) come along to Giving Voice run by Rowena Whitehead on Wednesday evenings 7.30-9pm at St Andrew’s Church Hall, Church Street, Chesterton.  I can vouch for the classes being great fun and we all leave smiling and humming the last tune.  For further information about this group and other similar “natural singing” groups, contact Rowena direct on 01223  573288.

 

Music is also good for helping mobility: there has been much in the press recently about the benefits of dancing - tango and the like. I haven’t tried this – or know anyone who has – but I can certainly recommend line dancing (Mondays 6 -7.30pm at Brown's Field Youth and Community Centre, 31a Green End Road 01223 420309).  Or you could join us at Aquatherapy (click Activities on the website) on Thursday afternoons and discover how some old tunes of the 60s can get you to hop, skip and jump - whilst singing the lyrics! – in no time at all.

Finally you have an opportunity to try out different exercises during the “Cambridgeshire Celebrates Age” festival. Further information from COPE (01223 364303) or Georgina Poulter on 01223 508150.

 

Alison Pegrum

 

(Editors note - Try Sing Loud (Nightingale Singers) sessions - see Activities on the website)

 

 

 

 

 

 

 

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 Cambridge Dial-a-Ride

 

 

Enabling Mobility

 

Cambridge Dial-a-Ride is a non-profit organisation, which provides local transport services that are safe, affordable, and accessible to community groups and to individuals who have difficulty in accessing public transport.

 

Telephone 01223 506335     Website cambridgedialaride.org.uk

 

email camdar05@hotmail.co.uk

 

 

 

 

 

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PROBLEMS WITH DRINKING FROM A CUP OR GLASS

 

Useful vessels

 

People have often said how difficult it can be to drink to the bottom of a cup or glass because their neck is flexed forward or that they need assistance from someone else to hold the cup for them when drinking. I have recently learned of two brilliant ideas from

Lays Mikolajczyk Speech and Language Therapist in Ely: -

1.     A ‘nosey mug’. This has part of the rim of the mug cut away (opposite side from where you sip), which prevents immediate contact with one’s nose, allowing the mug to

be tipped up higher.

2.     A flexible drinking straw with a one-way valve. This stops the fluid going down in the straw after sucking. Thus, drinking through the straw requires less effort. It is also

easier to just take one sip at a time, which enables better control when swallowing.

If you keep the drink (with straw) on a nearby table of convenient height and place the

drink on a non-slip mat, this may enable greater independence with drinking.

If you have swallowing problems, please contact your Speech and Language Therapist for advice about using a straw.

Also, are you deterred from the pleasure of going out for tea because you need to

thicken your fluids? Have you ever thought of putting enough thickening powder in a

small plastic container that could be discretely used for a cuppa in a café?

 

Parkinson’s Disease Specialist Nurse Team

 

 

 

 

 

 

 

 

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FROM THE PROFESSIONAL TEAM

 

THINKING LOUD: L.S.V.T. in the Community

 

( Lee Silverman Voice Treatment )

 

We are two speech and language therapists working for Cambridgeshire Community Services.  We have a growing caseload of clients with Parkinson’s Disease who are referred with communication and/or swallowing difficulties.

 

In 2005, we read about a radical new therapy approach, the Lee Silverman Voice Treatment (LSVT), originating from the USA, which has very impressive results. The evidence suggested short and long term improvement in speech volume, speech clarity, pitch, rate, facial expression and swallowing among PD patients.

 

In 2006 we were fortunate enough to be funded by Parkinson's UK to attend the certified LSVT workshop run by Dr Cynthia Fox and Dr Lorraine Ramig, the originators of the treatment program.  The course was inspiring for many reasons but mainly because we met people with PD who had participated in the LSVT treatment programme and they spoke positively and ‘loudly’ about the way it had changed their lives.

 

LSVT involves intensive one-to-one treatment 4 days a week for 4 weeks, and homework practice.  Each session involves an hour of high effort work from clients and therapists.

 

The principle behind the treatment is that people with PD have a soft (low volume) voice but due to the PD Disease process, they are not always aware of this.  Treatment aims to heighten this awareness and uses vocal exercises, and ‘think loud’ prompts to achieve a normal volume voice.

 

We have been piloting the treatment since December 2006, working with a variety of PD clients, including two that have undergone deep brain stimulation treatment.  Our evidence suggests that with regular practice, clients can maintain a long-term improvement in speech volume.

 

We have received very positive feedback from the majority of our clients and their families/friends (see below).

 

As therapists we really enjoy working so closely with our clients and effecting positive change through LSVT.  We hope to continue developing LSVT and welcome thoughts and feedback from Service Users.

 

Suzanne Webb

Alison Winterbotham

(Specialist Speech and Language Therapists)

 

To email Suzanne, add suzweb57 to the text below (this helps to protect from spam).

@yahoo.co.uk

 

 

 

 

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A View of LSVT by A Person with PD

 

Initially invited by the speech therapists at Brookfields to a series of group LSVT sessions, I came eager to try anything which might help slow down the process of deterioration in my speech.  One of my first symptoms had been an inability to sing tunefully, although when young, I had had years of singing training. (“There must be a reason that you can’t sing,” said an old friend at whose wedding I had sung years ago.)  At the initial group sessions I absorbed the basic principles of LSVT.  What you need to know is very simple - “THINK LOUD” - and so I joined the chorus of “Aaahs” (though initially embarrassed and with a vocal range of what felt like a couple of octaves when I was actually trying to stay on one note).  What truly staggered me, however, was the difference in volume and intelligibility, which could be achieved when thinking loud.  Quite advanced problems in speech which could be obvious in normal conversation seemed almost to vanish if a speaker was asked to read a passage into the tape recorder, while “thinking loud”.

 

I added my name to the list of those wishing to undertake the commitment of undergoing the course of individual treatment.  Yes, it is a commitment to attend four days a week for four weeks, together with home practice, but the results are worth it, and it has never felt like a burden.

 

I think that one of the reasons that LSVT succeeds is that it greatly heightens awareness.  Rather than letting deterioration in speech and swallowing difficulties take their course, perhaps scarcely noticed in the early stages of PD, LSVT encourages you to constantly monitor yourself and it provides the means of fighting back.   I am very grateful to Alison and Suzanne for the work they have done with me, and also for making the sessions so pleasant.

 

Diana Brodie

 

 

 

 

 

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Selling on eBay to benefit Parkinson's UK

 

Did you know that it is possible to sell items on eBay and donate a percentage of the sale price to Parkinson's UK ?  Or to choose what you want to buy from a list where all items benefit a listed charity.  If you are an eBay customer, or are thinking of becoming one, try looking at this link:

 

 http://pages.ebay.co.uk/ebayforcharity/index.html

 

 

 

 

 

 

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DRIVING ASSESSMENT

 

This is an account of what may happen if a Parkinson’s patient has their ability to drive a car questioned, either by his GP, a specialist, or the DVLC.  They may be required by the DVLC to attend a Mobility Assessment Centre for a driving assessment.  The test I had to take was in two parts:

 

Part 1 – conducted by an occupational therapist.

      • Questions about my mobility history, eg, do I use a wheelchair?, how far can I walk?
      • Visual tests, including reading a number plate at 20.5 metres.
      • A cognitive and perceptual assessment
      • A physical assessment, eg testing fine finger movement and the strength of joints
      • A static rig assessment, ie a dummy car
      • An acoustic reaction test
      • A visual reaction test
      • An 18 lamp test
      • A Choice Reaction test

All these tests being satisfactory, it is time to move to the second part of the test.

 

Part 2 – In Car Testing.  Choice of manual or automatic.  I chose a Ford Focus manual.  Throughout the test, I was accompanied by a driving examiner.  I was tested on all the usual things, eg reversing, braking.  Location of the test was the town of Thetford.  Distance covered was 18 miles.  Duration of test drive was 55 minutes.  Driving both in town and on the open highway.  I passed, and was rewarded with a three-year driving licence.

 

NB       Take a driver with you.  If you fail, you will not be allowed to drive home.

 

John Barton

 

01223 423981

 

 

 

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NEW WAYS TO SUPPORT Parkinson's UK

 

Unity Lottery – Parkinson's UK has formed a partnership with Unity, the nation’s charity lottery, offering the chance to win £25,000 every Saturday from only £1 a week.  There are currently 597 Parkinson's UK supporters playing the Unity Lottery and so far 48 of them have won prizes in February and March!  For more information about the Unity Lottery please call the Unity Helpline 0870 050 9240 of visit http://www.unitylottery.co.uk/parkinsons

             

In Celebration Giving – Why not celebrate your next special occasion by asking your friends to pledge donations as an alternative to traditional gifts?  For more information or to request a pack of ten donation cards, please contact Donor Services on 020 7932 1303 or email donorservices@parkinsons.org.uk.

 

In Memoriam Giving – Making a donation in tribute to someone close to you is a positive and lasting way to remember your loved one.  For more information or to request a pack of ten donation cards, please contact Donor Services on 020 7932 1303 or email donorservices@parkinsons.org.uk.

 

Everyclick.com - Everyclick.com is a search engine with a difference.  It works just like any other major search engine, but the difference is that you can raise money for Parkinson's UK!  Whenever you search the web with Everyclick.com you will be raising funds for Parkinson's UK, without any cost to you.  So far we have raised £312.76 through the site and would like your help to increase this even more!  Visit www.everyclick.com and enter Parkinson's in the search box for more information.

 

                                   

 

 

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Grumpy Old Man

 

 

Book of Poems   James Chesterman has published a book of eighty poems called “Grumpy Old Man”. Price £5 includes postage.  Order direct from James, c/o Knight’s Manor, Swaffham Prior, Cambridge CB5 0LD.  50% of all receipts will be donated to Parkinson's UK .  Many of the poems relate to Parkinson’s.

 

 

 

 

 

 

 

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Disclaimer

 

The views expressed on this page are those of the contributors and not necessarily the views of Parkinson's UK.  Any comments concerning treatment or medication should be discussed with your doctor in the first instance.

 

 

 This page updated 29 February 2016