Hi. I’m a fiercely independent 63 yr old single. Him indoors passed away 9 years ago. Still missed greatly.
6 weeks ago my right hand started to shake. 3 weeks ago I had an econsult with my GP. Last Friday I was diagnosed with Parkinson’s. I don’t know how I feel or what I’m meant to feel. I’ve only told 1 friend who is very pragmatic, supportive and very practical. I don’t know how or when to tell my 3 children. 2 of them live to far away and oversea for practical support but I’m worried about placing more pressure on my son who lives 1/2 hr away. He has enough of his own problems. I know I will have to tell eventually.
I hate people noticing my tremor and then feeling sorry for me. I just don’t want to share! Is this a normal reaction. What’s normal anyway?
Hate all these new feelings.
Hi @thaisalex
I am sorry to hear about your diagnosis and understand that it is difficult to come to terms with Parkinson’s, however as I am sure many will tell you on this forum there is life after parkinson’s. I would advice you to contact our helpline on 0808 800 0303 as our expert advisers can talk you through what to expect, services available to you and hopefully answer all the questions you have. In addition they can send you some of our publications and put you in touch with your local adviser. It may be beneficial to have a look at our newly diagnosed section at https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-do-list
Hopefully once you have come to terms with it yourself you will feel better about sharing with your friends and family.
I hope this helps.
Kind regards
Sue - Moderation team
Hi and welcome @thaisalex, you’re in shock but stop right there. You don’t need to change your life because of the diagnosis, carry on with your daily life as normal. It is important that your family know of your condition but reassure them that there’s nothing to worry about. All being well it will be some time before you get anymore onset of the condition. The thing with Parky is that we are all different, no two people are the same but we are altogether. Adopt a positive attitude and rise above it. Find out from your GP Surgery where your Parkinsons Nurse is located, this person is good for advice. In the mean time don’t fall into the trap of seeking out knowledge off the internet about Parky, if you want to know anything you come on here, ask your question and someone will give you the benefit of their knowledge. We are a friendly bunch on here and are ready to help. Take care.
Les
@thaisalex hello and welcome to the forum. You will find lots of advice and folks sharing their own experiences. I agree with @cruisecontroller don’t fall in to the trap of searching out info on the internet, I did and it was certainly an error at the time. You will find as Les has said lots of support and help here. Also @SueMartin from Parkinson’s UK has given you some info and advice and I have used PUK many times.
Ok so “I’m a fiercely independent” well good for you and so am I and I am still the same 4 years on with mr parky. Deliberate use of lower case m & p as I am still the same fiercely independent person who has now got mr parky along for a ride. When is the right time to tell your children, family & friends is up to you. Personally I had my best friend and wife Claire with me when I was diagnosed 4 years ago, aged 54 so did not have to think how to tell her. We mulled it over shed a tear or two had more laughs and agreed oh well let’s get on with it and it will be my decision as and when we told anyone else.
Well it took 4 months before we told our children 23 & 21 at the time, then a further 2 months before we told my parents and my mother in law. Over the next 6 months I slowly and at my own pace told friends and work colleagues but only when I wanted and on my terms of how much to say about mr parky.
I can relate to not wanting people to feel sorry for you, but you will soon overcome that I am sure. As an independent person we have a canny knack of knowing when to say something and when to just smile and nod politely.
Take your time, set your own pace and when the time is right and you will know when this is, tell those that need to know and how it effects you as a person and that I if you need any additional support above what you already receive from a loving family and close friends. Then you will let them know how they can help. There’s no rush it all about you.
Good luck with your journey with parky and if you ever need something even somewhere to vent any frustrations, then just head back to the forum. 