Hi Everyone
We are new to this forum, with a diagnosis yesterday for my partner of tremulous parkinsons.
Any help, tips and advice would be appreciated, especially on how to approach and tell the family.
Many thanks
Hi Jules,
We just wanted to take a moment to welcome you to the forum. You’re sure to hear from our community members about their experiences with fasciculations, and you can also read previous forum discussions on the topic by having a search on our website. This carer’s guide might be of interest, as well. Please also make use of our kind and supportive advisers, available at our free and confidential helpline at 0808 800 0303. They are highly knowledgeable and ready to help with a range of Parkinson’s-related questions.
We hope these resources can be of some help, and again, we offer our warmest welcome,
Jem
Moderation Team
Hello
I didn’t want to pass on by because I feel that I might be able to share some experience. 20 years ago in 2003, my mum was diagnosed with Parkinson’s at age 62. I was 32 at the time.
It was frightening for her and it was frightening for all of us. The fear of the unknown and there wasn’t the access to information that there is today. I understand the fear. The main thing I remember my mum telling us was ‘I may have Parkinsons, but Parkinson’s hasn’t got me’.
My mum actually had many good years on medication. She played golf, she drove a car and she kept physically fit. You would never have known that she had Parkinsons.
About 12 years in, complications arose and she is now in the latter stages. I won’t dwell on those things for the purpose of this message. I really just wanted to share that through my mum, I have now experienced what you are going through in terms of sharing with the wider family.
It can seem overwhelming but try to live in the here and now and appreciate what you are currently able to do (I need to listen to my own advice here) : )
Hello HavanaS
Thank you so much for your message. It is all very daunting to both of us at the moment. Si says its difficult to comprehend because he doesn’t feel ill and I can understand that.
Unfortunately, we have a lot of other issues going on within the family and are unable to tell our parents or our two boys at present and have only told my two closes friends, so it is nice to hear a voice who has been through this.
Of course it is soo new, we do not know what to expect and on what time scales. I am presuming we will hear more once we have been in touch with the Parkinson’s nurses.
I am also going to contact our local branch to make contact with people in the same situation but I will try to live in the here and now and it would be good to know that you listen to your own advice.
Thank you once again Jules
Hello
I totally understand. Please feel free to send me a direct message if you would like to chat more.
Hi Havana
I have read a couple of your previous posts and realise you have your own resent problems with symptoms and your reply to my post is even more appreciated.
I will send you a direct message soon, once I’ve found out how to do it on here. Lol
Haha. It can be difficult to navigate. You click on the person’s name and then on the message symbol to send a direct message
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