Helpful advice

I was in the small wee hours of this morning writing a page in my journal. I was going over my thoughts and experiences. When I was first diagnosed with the “unwanted guest” (Parkinson’s).
I have read and written the posts since, and we have all felt that fear, how is this going to affect me physically. How will I cope with work and money? How is going to affect my relationships? How can I plan?
And had a moment! and thought if I could impart some advice to newly diagnosed friends on here, what would I say?
As someone who is entering a new phase with her “unwanted guest” In hindsight. I wish someone had told me; exercise is so important. Get as fit as you possibly can and maintain it. Not only because it keeps us flexible. Because we all have felt that feeling of being the tin man in the Wizard of Oz, first thing on a morning. But helps with balancing the mind as well as the body. Do not wait till things start to impede physically on your life, start as soon as you get your diagnosis. Does anyone else have something they wished they had done sooner or advise that could be helpful to friends on here starting their journey with Parkinson’s?
Esme x


Hi Esme, what a wonderful idea! Particularly, as I can relate and have found some very helpful, kind words on posts here when I started looking for my what if, and when questions. One of the really useful tips off fairy godmother Tot (that is what I now see her as) was to keep a diary, nothing vast but symptoms, mood, sleep, diet, exercise so I could share with consultant. I would also ask for expansion on what if I start meds, side effects I didn’t know until three months in how it is abosrbed and how diet can affect how and when you take them. Staying positive, which can be really hard but knowing there will be someone on here to help! :smile:

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Hi @AnaElsa
I love the name fairy God mother (@Tot ), and she is. Good naming.

Hi @Esme
I would advise people about keeping positivity and try to carry on as before. Stop over thinking and get on with life. Also share the news initially with people who is able to understand you, support you and be there when needed. My another advice is when you go for appointment you prepare yourself for the appointment. As mentioned by fairy godmother keep the diary about symptoms etc but also write down your questions as well. Especially when you go for the appointment after scan . When I have been told my DAT SCAN report I felt blank , the neurologist asked me do you want to ask anything, I said I don’t know ( it was over the phone).
Share news with people when you are ready to do so. Because the person hearing the news might have hundreds of questions to ask or shower you with sympathies.

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