See below for information and advice regarding the following topics:
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Recently diagnosed with Parkinson’s
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Living with Parkinson’s
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Medication
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Carer or family member
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Research
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Further information
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Recently Diagnosed with Parkinson’s
If you have been diagnosed recently with Parkinson’s or a related disorder, you will be automatically referred to the Clara Cross Centre.
We aim to offer you your first appointment within 16 weeks, however we appreciate that this may feel like a long wait for you to find out more information about your condition and how to start managing your symptoms.
There are some excellent websites and resources which may be useful to look at in the meantime:
- Parkinson’s UK (homepage) (parkinsons.org.uk)
- Parkinson’s UK (newly diagnosed) (parkinsons.org.uk)
Other websites which may be helpful:
- Progressive Supranuclear Palsy (pspassociation.org.uk)
- Multiple Systems Atrophy (msatrust.org.uk)
- Cortico-basal Degeneration (alzheimers.org.uk)
- Dementia with lewy bodies (alzheimersresearchuk.org)
You may be invited to attend one of the clinics ‘newly diagnosed’ information sessions – these take place in the clinic every 4 months, and allow you to meet the members of the team, ask questions and go away with information about how to help manage your condition.
There are some general strategies and information which may be useful:
- Helping to self-manage your Parkinson’s (Self-management of PD tips)
- Understanding and Managing non-motor symptoms of Parkinson’s Managing hidden Parkinson’s symptoms – YouTube
You may be interested in learning about alternative treatment options in Parkinson’s, and a useful link is below:
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Living with Parkinson’s
Please see the links below to a range of useful information.
Movement and Exercise:
- Getting in and out of bed (Getting in and out of bed leaflet 2022)
- Getting in and out of the chair (Getting out of a chair 2022)
- New bed (Buying a new bed 2022)
- Parkinson’s UK exercise link (Exercise | Parkinson’s UK (parkinsons.org.uk)
- PD Warrior (Exercise Based Parkinson’s Treatment – Live Brave – PD Warrior)
- General physical exercise advice (www.gov.uk)
- Extend your health, Ketyn Jepson (Extend Your Health – Helping people live a healthy later life)
- BaNES wellbeing college (information to follow)
Speech, Communication and Swallowing:
- Word finding strategies (Word finding difficulties 2022)
- Communication tips (Tips for communicating 2022)
- Looking after your voice (Voice Care 2022)
- Writing strategies (Writing Strategies 2022)
- Saliva management (Saliva management 2022)
- Safer swallowing (Safer swallowing strategies 2022)
Mood and wellbeing information:
- Clinical Psychology and how it can help (Clinical Psychology Leaflet 2022)
- BaNES wellbeing college (information to follow)
- Cognitive screens and assessments (information coming soon)
Your body:
- How to use a blood pressure machine (information coming soon)
- Orthostatic hypotension (Living with Postural Hypotension)
- Bladder and bowel advice (Bladder and bowel problems | Parkinson’s UK (parkinsons.org.uk)
Driving and Independent Living:
- You may need to contact your consultant for a letter regarding renewing your driving licence. This is something which needs to be organised with your consultant via their secretary – unfortunately the Parkinson’s clinic cannot organise this for you. Please see the enclosed leaflet with telephone numbers to contact in relation to this: DVLA leaflet
- Vassall Centre (driving assessment) (www.drivingandmobility.org)
- Independent Living Centre (ilc.org.uk)
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Medication
- Parkinson’s UK leaflet (Drug treatment for Parkinson’s)
- Parkinson’s UK medication information (Parkinson’s drugs | Parkinson’s UK (parkinsons.org.uk)
- Clara Cross Parkinson’s Adviceline (Parkinson’s Advice line 2022)
- Taking medications on time (Pill timer leaflet 2022)
- Setting up Tabtime 8 (How to set tabtime 8 2022)
- Ordering medications (information coming soon)
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Carer or Family Member
- Carer’s network (carers-network.org.uk)
- BANES carers centre (www.banescarerscentre.org.uk)
- Clinic consent form (to speak to a relative about your family member with Parkinson’s) – please print out and either bring to clinic or send in (information coming soon)
Making donations:
At times, family or friends choose to make a donation to the Parkinson’s Service at Clara Cross. We are always extremely grateful for these donations.
If you should wish to do this, you can either send a cheque (made payable to HCRG Care Services) or bank transfer (Donations to the Parkinson’s service).
Many thanks
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Research
- Parkinson’s UK Research (parkinsons.org.uk)
- Research papers written by local consultants:
Parkinson’s disease in older people 2020 Alison Bamford and Emily Henderson
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Further Information
- Clara Cross Parkinson’s Adviceline (Parkinson’s Advice line 2022)
- Singing for the Brain (alzheimers.org.uk)
- Parkinson’s UK (homepage) (parkinsons.org.uk)
- Progressive Supranuclear Palsy (pspassociation.org.uk)
- Multiple Systems Atrophy (msatrust.org.uk)
- Cortico-basal Degeneration (alzheimers.org.uk)
- Dementia with lewy bodies (alzheimersresearchuk.org)
- We Care and Repair (www.wecr.org.uk)
- Vassall centre (www.drivingandmobility.org)
- Independent living centre (ilc.org.uk)