About the Introductions and Personal Stories Category


#1

If you are a new member, welcome to the forum!

This is the place for introductions and for you to tell us a little bit about yourself. Do you have Parkinson’s? When were you diagnosed? Do you still work? What’s your family situation? Or maybe you care for someone with Parkinson’s? Tell us about it.

If you’ve been here for a while and want to share some aspect of your life or your journey with Parkinson’s, this space is also for sharing that.

Please also have a look at the terms of use for our website and the forum rules. Our forum tutorial videos give some useful tips and things to remember when making posts.

Further information


pinned #2

#3

Hi, I’m new to the forum, my husband has been recently been diagnosed with PD. I am shell shocked after having such a terrible year. So many of my family were ill last year, I supported them all through operations, chemotherapy and then I lost my mum after a 6 month illness. Though I would not change being with her and had some lovely moments, she was independent and making sure she was being looked after, was exhausting - I got caught up in a system I knew little about, fighting both the hospital and social services to make sure she wasn’t sent home to a place that wasn’t safe for her. She wouldn’t let me claim any benefits for her and I would be constantly online researching charities etc, once I got home. I never got her home which is my one regret but I did try. I have barely had time to catch my breath when we received this news… He was my total rock and had been saying that he had a trapped nerve! He is so worried that he is going to do the same to me and wear me out. I am trying to stay positive and reassure him. He has the Billy Connolly left arm tremor but on the plus side (I hope) the left lobe lesion is described as being ‘insignificant at this stage’, he doesn’t even take aspirin so I doubt he will try pills unless he really has to. He is staying active which I am encouraging him to do but like another posting, I don’t know whether to back-off and leave him some independence at this early stage, or stay close. I was supposed to return to work this year and was quite looking forward to using my brain again! I lived off a redundancy payment all last year but it won’t last forever, on the other hand, he has to come first. Selfishly, I’d like to go to a bungalow sooner rather than later, so we can still make friends together in a street but he says the thought of moving is scary. I am rambling on - sorry, but we have only had the diagnosis from the consultant, haven’t even seen the PS specialist nurse or had a doctor talk about what to expect yet. I am already reading and reading trying to see how to make the journey easier.


#4

Hi Wiffey,

Welcome to the Forum. I’m very sorry to hear about your very difficult year, and your husband’s recent diagnosis. There are a few areas on our website you might want to take a look at, as they will hopefully have some advice and information that you may find helpful.

Firstly, you can find information and support for people newly diagnosed with Parkinson’s here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

You can also find more specific advice on caring for a loved one with Parkinson’s here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons

And lastly you might want to think about contacting our Helpline - a great source of information, advice and support on all areas of living with Parkinson’s. You can reach them via Email at [email protected] or Call FREE on 0808 800 0303. They’re available on Monday-Friday from 9am-7pm, and Saturday from 10am-2pm.

I hope this helps.

Best wishes,

Owen,
Moderation Team


#5

I have had


#6

Hi everyone - I was diagnosed with Parkinson’s about 9 months ago. I am 68 and was totally stunned when I was diagnosed - I have always been fit and healthy. The tremors are the worst part and the prescribed medication does not seem to have any effect. I have found a source of
RSO oil which does help. I am so pleased to find a group to share with and who I know understands and I thank all of you for being there.
JeanG


#7

Hi @Jean6254,

Welcome to the forum.

I’m sorry to hear about your recent diagnosis; it’s completely understandable if you’re feeling shell shocked, this is not the easiest news to digest.

We know that Parkinson’s affects everyone differently which is why we have a ‘newly diagnosed’ section on our website with all the information you need to support you during this time. There’s information on the different types of support that’s available to you, support for your family and an introductory guide that you can download. You can find this info here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Also, our helpline and Parkinson’s local advisers are here to answer any questions you have about your recent diagnosis and life with Parkinson’s. Do give us a call on 0808 800 0303.

I hope you find this information helpful.

Best wishes,
Reah