www.parkinsonscambridge.org.uk

Useful information

 

 

 

 

FUNDER-FINDER SCHEME

 

Run by Disability Cambridgeshire (formally called Directions Plus), this is a scheme whereby grants from charitable trusts can be accessed.  Disability Cambridgeshire make a decision on which trusts would be suitable to approach, based on information regarding where clients have lived, their profession or trade, their interests etc.  A list of suitable charities is then given to the client who applies directly to the chosen charities.  A letter confirming medical diagnosis and need should accompany the application.  The funding can be for any item (e.g. a stairlift).  It is not means–tested.  If you are interested, please contact Hilary Gorton at Disability Cambridgeshire (01480 839192).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

New Carers’ Information Service:  Carers Direct

 

The Department of Health has launched a new telephone advice line and online information service for carers in England.  Carers Direct includes information on a range of topics including benefits and links to local services and support.  Visit www.nhs.uk/carersdirect.

 

A freephone Carers Helpline was also launched on 1st April.  This is available seven days a week and the number is 0808 802 0202.

 

 

 

 

 

 

 

 

 

 

 

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.  Here is the Foreword, written by our President, Jane Asher.

 

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.

 

 

 

 

 

 

 

 

 

 

 

HELP WITH CARE CHOICES

 

 

There is a useful book which gives information about the availability of Care of all types in Cambridgeshire.  The address of its website is www.carechoices.co.uk.  It can be consulted on-line and information is given for each county.

 

Care Choices provides free public information services to assist in your search for care information. There are two services:

 

For care of disabled adults (16 - 64) there is the Disabilities Care Register.

For care of the elderly there is the Care Select Helpline Service.

 

Through the completion of a short questionnaire they are able to provide you with a short-list of appropriate care providers that meet your requirements and preferences. Both services can be accessed calling the helpline on 0800 38 92 077 or online.

 

 

 

 

 



 

 

 

 

 



 

 

OLLIE'S WHEELCHAIR FRIENDLY TRANSPORT SERVICE

 

This is a new 24 hour service to both local and country wide destinations for people in wheelchairs and their carers, for any purpose or journey, including hospital visits and day trips.  Staff members are CRB and POVA checked and have training in moving and handling, first aid and safe handling of wheelchairs.


For a quote or informal meeting call 01799 508240 or 0790 564 5849 or

 

www.ollieswheelchairfriendly.com

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Cambridgeshire Registered Trader Scheme

 

is to help people aged 60 years and over.  List of traders, CRB checked and they have passed the strict auditing process of Cambridgeshire Trading Standards.  The scheme should ensure that traders do a “fair day’s work for a fair day’s pay” and using this list of registered and checked traders could prevent older and vulnerable residents being taken for a ride by cowboy companies and avoid rogue traders.  Trading Standards/Registered Trader, Cambs County Council, PO Box 40, Cambridge CB3 6ZR.  Telephone 01354 696677.  Or take a look at the website,

 

http://www.cambridgeshire.gov.uk/business/trading/services/trader_scheme.htm

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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 Glynis Brookman, ISW, on 0844 225 3617, 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:

 

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

 

Glynis Brookman

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

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 together – 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 Brownfields Centre).  Or you could join us in the swimming pool 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 which is being launched county-wide on 1 October. Further information from COPE (01223 364303) or Cambridge City Council (01223 517523).

 

Alison Pegrum

 

 

 

 

 

 

 

 

 

 

 

 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 506335     Website http://www.colc.co.uk/cambridge/dialaride/index.htm

 

 

 

 

 

 

 

 

 

 

 

 

 

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?

 

Mary Halls, Parkinson’s Disease Specialist Nurse Team

 

 

 

 

 

 

 

 

 

 

 

 

 

FROM THE PROFESSIONAL TEAM

 

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

 

 

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 the PDS 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)

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

Selling on eBay to benefit the PDS

 

Did you know that it is possible to sell items on eBay and donate a percentage of the sale price to the PDS?  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

 

 

 

 

 

 

 

 

 

 

 

 

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.

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

 

 

 

 

 

 

 

 

NEW WAYS TO SUPPORT THE PDS

 

Unity Lottery – The PDS 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 PDS 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 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.

 

Wedding List giving - Your family could support the PDS through creating a charity wedding list, where their guests can donate money to the PDS as an alternative, or in addition, to a traditional list.  To register for your alternative charity list, visit www.weddinglistgiving.com

 

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 PDS!  Whenever you search the web with Everyclick.com you will be raising funds for the PDS, 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 for more information.

 

 

                                                                                                                                                           

If anyone would like any further information on any of these activities, please contact Sarah Mole, Donor Development Officer at head office on 020 7932 1304 or email appeals@parkinsons.org.uk.

 

 

 

 

 

 

 

 

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 the PDS.  Many of the poems relate to Parkinson’s.

 

 

 

 

 

 

 

 

 

 

 

 

 

Disclaimer

 

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