Newly Diagnosed


#1
Hi Folks
I have just been Diagnosed with PD about 5 weeks ago.I am 42yrs old with twin boys(14yrs old) who are struggling a bit to come to terms with my illness.Has anyone any advice as to how I can try and reassure them. Thanks

#2
Hi Alan. Welcome. I cant really answer your question. I havent told my kids as I consider them too young and theyve been through a lot recently so I will tell them in the future at some point.

There are Parkinsons UK booklets to help tell your kids. If you look on the main site you will find them and you can download them in PDF. (They did make me sad though I have to say :()

#3
Thank You Summerskye,I thought I was doing the right thing telling them when they noticed my tremour and when I got the diagnosis. I have ordered some info through the Resources page on here so hopefully once this comes through it may make a little bit more sense to them.They are both quite mature kids and I thought it would make it easier to tell them. The thing thats worrying me is one of them broke down in floods of tears this week to his mum saying that he can't handle watching me tremour and struggle mainly in the morning.My wife has been my rock recently and has tried to reassure him so hopefully when the resource stuff comes through this may help.Thanks:confused:

#4
Hi I am new to the forum and wonder if anyone can help my father was diagnosed about 18 months ago he has quite bas shaking in his hands, and did have problems with excessive saliva which was a big problem for him but he recently had botox injections into his saliva glands which have worked really well.The biggest problem now is he is having bouts of very aggressive behaviour and I am very worried at the toll this is taking on my mother (he is 85 she is 81 and suffers from myloma)he is also becoming very attention seeking and this is driving her to distraction has anyone else had this sort of problem.Thank you all very much

#5
Hi, and welcome to the forum Alan, I am 52 and Like you have recently been diagnosed with PD (4th November). I have four kids, (23, 18, 16 and 10) and like you, I told them as they knew something was going on. They all took the news not to bad apart from my eldest daughter, Clare who can't really talk about it and cry's alot, So like you I'm unsure of what to do next with her, maybe she just need's time, My wife has been fantastic with all of us and I don't think I could have managed without her. Take care, keep well. Paul:grin:

#6
Many thanks Paul, its difficult as you don't know what to do for the best.Like you my wife has been fantastic throughout. I can see however this week that the strain of my son is telling on her....will keep you posted and I hope that things settle down with your daughter she might just need a bit of time to come to terms with your own diagnosis,like wise matey keep well Thanks Alan :neutral_face:

#7
hiya alan ,welcome to the forum ,im ali ,im 42 years old,and ive been dx for 11 years now. there good surport on the forum and new friends to be made,which will help you with confidence .i have a 22 year old daugter and when i was dx she was 11 yeas old,just gone up to senour school,which was very hard to deal with goin to new school new friends etc.im sure u no wot i mean.but then on top of that iha to sit her down and tell her about my dx of pd.i had booklets which i had done resurch on first,i tryed to get as much info as i could at that time,in case she threw questions at me and i had no answer for her.thankgoodness for the books i say .she the same as many people thought pd was a older persons disease,but as we all no now,people are gettin younger with this dx.bein there and showin love to ur kids is the most iportant thing u can give them,ur strugglin with the dx ur self,but ur family will be to,tryin to understand .so this is when a good family try stick togeather,and learn togeather,so there for u ,and ur there for them.well,alan ,ive rabbertited to you :laughing:,and u most prob thought gosh wot the heck this girl wobblin on about.it worked for me alan ,i hope it works for you x good luck x:smile:

#8
Many Thanks ali, couldn't agree more just joined this forum and already I feel as though I have made some new friends who will be there for me on the good days and bad so thank you very much. I guess its just takes some getting used to after the initial diagnosis for us aswell as our partners and children.I guess the moral is stay strong and you will get through it.Thanks again ali Alan

#9
Hi Alan 1405 and Sasvic. I am 62 and on medication diagnosed 6 years ago but leading an active life. My daughter has accepted it fine but she was 22. Her attitude is that these things happen in life and many of her friends parents have also had serious illness. At the same time she is very positive in encouraging me to do things and is helpful. Best wishes to you both.

#10
I told my children as soon as i was diagnosed, they are 29.27.25 and 18. Once I had reassured them i was not in imminent danger of pegging out it was life as normal. I am still asked to babysit, drive my youngest to parties so he can have a drink, spend days doing his washing and making beds etc

Still working full time, still doing my degree and despite the pain and stiffness getting on with my life. I have every intention of continuing as long as possible.

The only difference is they ring me more to ask "you Ok" yes? good can you .......

Caroline x

#11
Hi Alan

Just been diagnosed three days age.i have 12year old twins whom I've doted on since they were born 12 week early at 2lb1oz and 2lb 6oz.girl has cerebral palesy and diabetes (wheelchair bound)and the lad has aspergers.

I told them straight away.the girl said youve got to deal with I've had to.you need to help me. And the boy said ok can I go on the computer now.

My wife has enough on her plate to help me.

We've had really bad problems in. The past but you work through them and they get easier but somehow I don't think pd will

We can all help each other on here with advise and support for each other
Ps sorry for going on

#12
In my experience children know precisely what is going on and the worst thing we can do is patronise them by not telling them. I have also worked as a teacher for 25 years with adolescents: they know stuff. They are extremely resilient and we need them on board.

#13
dear alan
i was diagnosed april this year i have 2 boys 14 and 18 i told them both what was going on naturally they was concerned and worried but i told them once i got on the right medication things will get better and the best thing to tell them is you cant die with parkinsons, your tremor will improve and so will everything else once you get on the meds that suit you. kids are very good at hiding their feelings and im sure they worry about you and the future . if you exercise and look after yourself you can hold back the parkinsons longer and the meds are getting better all the time, its not all doom and gloom stay positive think about what you can achieve instead of what you cant the glass is definately half full?
the boys will look after you and will be a great support for you as you get older
be honest with them when you cant do things but make it up to them when you can ,
your boys love you and as they mature im sure they will understand parkinsons more and will be less worried as a cure will be found one day
take care schnaffer :stuck_out_tongue:

#14
Hi Alan 1405,
My father did keep it from me and my other two siblings.
We all in our own way had to come to terms with it.
He told us he had parkinsons eventually and all three of us went to the internet for information and books/library.
She may already be looking and reading,but at some stage she will ackknowledge it but will need help with it.
Sastic,my father behaves very similar and plays up.
You are going to have to toughen up and be more assertive with your father,It has worked on my father.