Recently diagnosed and trying to cope

Hi I was diagnosed a month ago but have known something wasn’t right for some time. Starting to tell friends and family-a few are unsurprised which I feel a bit funny about!
Mostly coping when I don’t dwell on it too much.
I’m 54, have a husband of 28 years and three grown up children age 19-25. I am a carer for my 24 year old son who has epilepsy autism and severe learning difficulties. We had planned on him remaining with us until his 40s.
Obviously very concerned and scared about the future and being another burden on my family.
My daughter and husband are heartbroken and my teenage son is at uni and seems ok for now!
We do joke about it but I can’t help thinking the worst (it’s the dementia that scares me) on my bad days.
I’m on pramipexole which has helped a bit -still gradually increasing the dose weekly.
Waiting brain scan results too -what will I learn from that?
Thanks in anticipation x

Hi @Jenga

Welcome to the Parkinson’s UK forum.

I’m sorry to hear about your recent Parkinson’s diagnosis and it’s completely understandable (not to mention normal in these circumstances) for your family and friends to experience mixed reactions to your diagnosis. However, you have come to the right place for the support and the community here is very kind and will undoubtedly offer their help to you. As a newly diagnosed person with Parkinson’s, you may want to take a look at the ‘Newly Diagnosed’ section on the Parkinson’s UK website as I’m sure it’ll be very useful to you.

With regard to your scan result, everyone is different so results may vary from person to person. For an idea of what you could possibly expect, we have information on the different scans used to diagnose Parkinson’s which you may find helpful here:

Lastly, we a team of amazing advisers via our confidential and free helpline, so if you need to speak to someone in more detail about this, do give us a call on 0808 800 0303.

Best wishes,
Forum Community Manager

Thank you x

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You’re welcome, I hope you find the right help and support that you’re looking for on the forum. :slightly_smiling_face:

Best wishes,

I don’t post much but your circumstances are so similar to my experience when I was diagnosed 10 years ago at age 55. At that time I was a 24/7 caregiver for my sister with Down Syndrome. I was very worried about how I would care for her, would I be able to enjoy future grandchildren, would my husband, who is 12 years older than me, be able to care for me and so on. As it turned out, with good medication management I have done much better than I expected. I made plans early on (my sister’s care, estate planning, downsized to one story home, reduced stress to a minimum) and focused on my health. I’m doing very well, enjoying my grandchildren and spending time with my husband. I think reducing stress has helped me the most because when I do have a stressful event my symptoms are much worse. Take care.

Thank you for your reply @Iris1, it was good to hear your experience and it gives me hope.

Hi J
Welcome…I don’t post much either but I was diagnosed over 3 years ago, although like you I knew that something wasn’6t right, probably a couple of years before.
Apart from developing a stooped walk ,more prevalent later in the day, I feel lm doing pretty well, exercises are a great help ( mainly stretching like yoga) and timely medication.
Everyone is different, do what feels right to you,
I’m sure you will cope very well

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