Draft guidance for newly diagnosed people with Parkinson's by Sharon (listener)
Dear (Newly diagnosed patient’s name) date
Thank you for attending your hospital appointment with me (Neurologist 's name here) today at (name of the hospital here). Please find attached (patients may also be given a hard copy as the mode of communication for guidance literature for a newly diagnosed patient will depend on the neurologist's assessment e.g. elderly may prefer a hard copy) some useful guidance and information (the neurologist should then explain about the guidance/information).
I will also write to your GP and provide you with a copy of the letter.
Guidance for those with a Parkinson's diagnosis
Contents
Parkinson's medication - how to help it work best for you
Useful groups
Information on follow-up appointments
Parkinson's Medication - how to help it work best for you
Your diet and exercise can help ease Parkinson’s symptoms, boost medication effect and improve well-being.
Diet
When taking your Parkinson's medication
As well as following your specific Parkinson’s prescription please try to avoid eating protein-heavy meals around the time of taking your Parkinson's medication.
Why: Some people with Parkinson's find that protein seems to interfere with how well the medication is absorbed by their body.
Note: Protein is important to help you main a balanced diet and should therefore still form part of your daily food intake.
Vitamin C
Please try to consume Vitamin C around the time you take your Parkinson's medication
Why: Parkinson's medication can benefit more quickly when taken with Vitamin C.
Your general diet - vitamins E, D, vitamin B complex
Vitamins E, D and vitamin B complex (with vitamin B1 thiamine) are beneficial to incorporate in your diet.
Probiotics
Probiotics are live bacteria and yeasts usually added to yoghurts or taken as food supplements and are often described as "good" or "friendly" bacteria beneficial to incorporate in your diet.
Why: Vitamins and probiotics have a major impact in Parkinson’s management.
A specialist dietitian appointment will be arranged (see below)
Exercise
Exercise with a safe enjoyable regime suitable to you.
Why: There is evidence that exercise may hold specific benefits for people with Parkinson's disease such as preventing or slowing progression, managing symptoms and avoiding isolation.
Note: Physical activity doesn’t necessarily mean attending exercise classes, it also includes gardening, dancing, going for a walk or simple chair exercises.
Useful Groups
Parkinson's support groups in the area
Parkinson's support groups around (suggest the area of the hospital) include:
(then list them, link and phone numbers)
Why: A Parkinson's diagnosis can result in a range of emotions and these organisations can provide information and support to suit your individual needs.
(need to get agreement from organisations that they are on this guidance and the wording used)
A podcast about life with Parkinson's
Movers and Shakers - www.moversandshakerspodcast.com - is an informative and entertaining podcast, run by a group of people who have experience of living with Parkinson's.
Why Listen: This regular podcast, titled "Movers & Shakers", shares the challenges and positives of Parkinson’s experience through informative, open and often amusing conversations. The group touch on research news and interview their own specialists and international experts on different aspects of the condition.
My mum told her neurologist at Kingston-upon-Thames hospital that she listens to the Movers and Shakers podcast and the neurologist replied that she also listens to it.
Information on follow-up appointments
Your further hospital appointment with the neurologist.
Your next appointment with the Neurologist (insert name) will be (ideally no more than 6 months)
Your hospital appointment with the Specialist Parkinson’s nurse.
An appointment with the Specialist Parkinson's nurse (insert name) will be (should be imminent)
My mum’s first neurologist letter mentioned she should have an appointment with the Parkinson’s nurse, but this was not picked up by the hospital, so no action was taken until I read the letter and contacted the hospital.
Your hospital appointment with the Specialist Parkinson’s dietitian.
A specialist dietitian appointment will be arranged (include how to do this - as in Movers and Shakers Dec 2023 postbag...possible group Zoom session, individual zoom, individual in person appointments)
Signed
(By the neurologist - so patient doesn’t feel alone)
Print name of neurologist
Sharon's references for writing this guidance:
Movers and Shakers podcast
Michael J Fox Foundation
NHS website
Input from Josie
Experience as a carer for Josie
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