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A Patient's Plan

Draft guidance for newly diagnosed people with Parkinson's by Sharon (listener)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


Read more about the episode on The Charter here.






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