Hi to everyone


#1

I was diagnosed in 2009 at the age of 43. I had noticed my symptoms quite early on, the constant stiffness in my right hand, which was affecting writing cards etc, aches in my right arm, "pill rolling" of my fingers and a mild tremor which got a bit worse when stressed. I was getting tired, but the tremor and twitching of my fingers got my attention the most and I started searching on the computer. Everything pointed to Parkinson's or MND. I was quite worried and at a doctors appointment for something totally different my tremor was very evident, and at that moment I decided that I was going to face what might be happening to me and mentioned my worries. I was referred, MRI scanned and diagnosed. I was quite careful as my children where young, not to let it show and to speak of it in secret to the rest of my family. I have always been quite a private person and have always had a positive attitude towards my PD and preferred at the beginning to carry on as if nothing was different. Now 6 years on and symptoms progressing to a degree that it affected my everyday function, I have begun taking Sinemet, Rasagiline and Ropinirole which have helped a great deal.  I have told quite few people, close friends quite early on but now telling people just to try and explain why I might appear a bit odd! Now, (and about time) I am on the verge of telling my children who are now asking questions. I feel they will understand and it will be much better out in the open. I decided to join the forum to chat with and really just to connect with anyone else with similar circumstances as I am beginning to feel a little isolated with my PD. My husband always says "you can't tell" but I know how I struggle to relax sometimes, especially in a crowd of "normal" people.

I would be pleased to hear from anyone similar aged in the Derbyshire area but also just to chat in the forum to anyone else living with PD.

 

 


#2

Hi Echo,

Welcome to the forum! I'm sure you'll find lots of friendly people to connect and chat to here. If you are feeling isolated please do feel free to call our Helpline on 0808 800 0303 for help and advice. We're open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm.

Best wishes,

Edwina

Moderation Team.


#3

Hi Echo, 

Although I live in Surrey and not Derby always here for a chat  on here if you need it! I have only recently joined the forum too. 

I've been diagnosed for over a year and have told my 3 daughters. I find them very supportive and feel better that they know. They recommend alternative remedies for me too. As well as my wife it's nice to have them to talk to about my parkies. I think if you're having feelings of isolation it would be a good idea to share your diagnosis with your children too? 

Have a lovely day

Julian 


#4

hi echo,

im in melton mowbray  so not that far away from you .im 57 diagnosed ayear but prob had it 5-6 yrs and was misdiagnosed for those yrs .im on sinemet and requip xl  plus sinemet cr at night .

feel free to message me 

 

 


#5

Hi Julian,

Thank you for responding to my introduction. It's taken a while for me to get back on the forum, I guess it's facing up to things when I log into the website and since I joined months ago there's always been something else I must do.

It did make me happy to read your view and I have, since my first post, told my children in a very matter of fact way, so as not to alarm them. They seem to have excepted it and are carrying on as normal, but I talk about it openly now and don't hide away my tablets. My teen daughter worries but it's difficult for her at the moment anyway (hormones and stuff!) we support each other..I  am her counsellor, bank, taxi, stylist, chef, cleaner (my husband has to be mentioned too in at least 3 of these jobs)... and she helps me when I'm tired!  Seriously though it is much better now, but I would be interested to know if you have found any reading material with information for children which is more about younger onset Parkinson's?

I'm thinking maybe I would like to be more involved with money raising activities, when something is happening around this area, I think this might introduce my children to people in similar circumstances.

Thanks again

Echo

 


#6

Hi Kittens3,

Great to hear from you, sorry about the long pause to answer. You seem to be on the same tablets as me, but I'm also on rasagiline which is the first drug I took. At the time it seemed to help, doubt it would do much on it's own now...but it's obviously got a part to play in the medication recipe. I think I'm ready for a tweak in my medication, it's been a while and when I forget a dose my tremor is quite bad and seems to affect my whole body in some circumstances, which is a little bit bothersome! I can remember sticking it out without tablets for a long time when first diagnosed...now I think life has to be lived as easy as you can make it for yourself.

Talk soon

Echo

 


#7

Hi Echo,

I'm very glad that things seem to be going better for you now that you've decided to share this with your children. I am sure that you have already seen the informative publications especially designed for very young children (http://www.parkinsons.org.uk/content/my-mum-has-parkinsons-childrens-book) and teenagers (http://www.parkinsons.org.uk/sites/default/files/publications/download/english/b085_guideforteenagers.pdf), but wanted to let you know about them just in case you haven't spotted them. These do not specifically refer to young onset Parkinson's, but they do tackle the realities of living with Parkinson's that may affect your children in a way they can understand them.

Also, it's great to hear you would like to get involved in fundraising activities. You can find plenty of events and activities on this page (http://www.parkinsons.org.uk/content/fundraise), but I thought you might be interested in the very family-friendly walks for Parkinson's. You can find an interactive map of upcoming walk locations here: https://www.parkinsons.org.uk/sites/default/files/walk_for_parkinsons_2016_interactive_map.pdf

I hope this is useful information, but please don't hesitate to ask for more details or help at any stage.

Best wishes,

Mara
‚Äč(Moderation Team)


#8

hello to you all , ive looked into helping with research, study etc in case i miss something new ,ive applied for a couple, missed timelines for others, can you drop me a line please if any thing pops up . please


#9

Hi smudger.s,

Thanks for your interest in taking part in Parkinson's research. We have a really informative section on this web site where you can find out about research news, events, projects and publications here: http://www.parkinsons.org.uk/content/about-our-research. You can also get involved in research if you wish. You can find more information about it at: http://www.parkinsons.org.uk/content/get-involved-parkinsons-research

Hope this is useful to you.

 

Best wishes,

Edwina

Moderation Team