Hi Everyone


#1

Hi, I was diagnosed the day before Christmas Eve, 23/12/2016. Been experiencing symptons for last three months so went to GP's. Referred to local  Hosp and seen quickly.

Still reeling, decided to ignore for Xmas but have started on meds on Boxing Day. No nausea as yet (thank God)!

I am 57, a Teaching Assistant in local primary school. Am married and have an 18 yr old son.Hubby poleaxed by diagnosis, so am being very supportive of him. Trying to keep it from family until tremor in right arm more under control. Understand that a positive attitude, exercise, diet and adjustment to life can be beneficial - so suggestions welcome! 

Got so many questions; do I tell my employer, is it normal for deterioration to be slow, are meds effective and so on.........


#2

Aye hog 

let me say this there isn't 2 of us the same as for how it will progress no one can tell you that , tell friends and employer as soon as you can , it's not a deadly thing but in saying that it's not nice but the docs no gonna tell you that you don't have long to live like some poor folk with a real serious illness PD not gonna kill you ok ! . Try and live don't let it rule you, stay in toutch with a PD nurse they are very helpful . Good luck in all you do , don't take life too serious , tooraloo

Ian ( Lord o the highlands ) 


#3

Hi Ian, thanks for your response! Been having an internal debate as to when/and or whether to tell Employer. Will go and practise some non-tear jerking ways to broach subject before I return to work after the New Year- well, one way is to give my boss the clinic dates I have amassed!!

Trying not to let it take over - I think I need to be back in some sort of routine day-wise as this sitting around does nothing is not good for your morale! Methinks a few nice bracing walks may be what's called for.

Cheers,

Jan

 


#4

Aye Jan better to let work know it's a big load of your mind when you do tell them , I am not pretending it's on my mind a lot having PD but nothing will change by thinking too much , sometimes the least you know the better to be quite honest but if you need to talk to parky folk there's plenty on here . A few of us make light work of it all on post new to group try coming on there some nights you will get a laugh now and then ! Good luck  tooraloo

Lord o the highland  Ian xx


#5
Hi Jan, What a Christmas for you. I would keep busy and work will be good for you. I took redundancy in September after 21 years. 4 months after diagnosis. But a few months later felt like a sick woman. Got myself a partime job and feel so much better. Less hanging about. Like ldj says everyone is different with this PD. The first few months you have lots of appmts then it calms down. Get your PD nurse in place as they're a great source of info. Physio helps and yoga. All the usual stretching. Sometimes it's our loved ones who take it bad as we're busy getting help. Keep communicating with your husband and son. I've got 3 young sons and we keep the conversation going. It's not easy but we all have years ahead of us so keep plugging away. Good luck

#6

 

Hi Jan, just read your post and believe it or not most if not all of us on the forum have had that same reaction as you when we were diagnosed! It takes a lot of accepting that you have PD, I was 57 when I was diagnosed just like you, that was six nearly seven years ago. Once they find the right medication that suits you then everything should be ok. As Ian said you are best to tell your employer (I had a few tears myself when I told my employer) but the company were brilliant. You will have to tell them because of your appointments with Neuro, GP and parkinsons nurse etc., Don't hide yourself away, be strong and if you have any questions you would like to ask go ahead and post them on the forum, someone will come up with the answer.

Take care - Sheila


#7

Hi Jan

 

New to this forum but like to say Hi.   I personally needed to let my diagnosis sink in before making any decisions involving work, family etc.  It felt overwhelming and I think that might be a normal response take your time as already mentioned your Parky nurse will help and the guys seem very supportive on here.  Since I was diagnosed at 47 and am now approaching 55 I have seen 2 friends die of a heart attack and one from cancer, my point being none of us know when our numbers up. I sound a bit like the grim reaper but you get my drift try not to worry too much , my friend remained employed as a nurse up to 11 yrs after diagnosis it really depends on the individual, she was not allowed to give injections or take blood though as she had a constant tremor !,!   Bye for now I have verbal diarrohoea x


#8

Thank you Ian, DivineR, Shelia and TeeHee,


Felling a little tearful today. Has felt very surreal over Xmas - no routine and such. Although it has been only a week since DX, it seems an eternity!

It is good to hear your stories and to have someone "on my side" as I feel a little removed from society at the mo. I know that to have a progressive condition is better that, as you said, having something that quickly ends life. You can plan and adjust your lifestyle accordingly.

Thanks for advice re work, will tackle that on Tues when I go back.

I will keep a eye on the Forum.

Chin up and cheer up, ever onwards.


#9

That's the stuff !! Happy new year when it comes !!! 


#10

You have a plan already, great stuff.  Happy New Year, and it will be, remember you have your new Parky Pals , off to buy some cheap champagne and a few nibbles.  I will raise a glass to you and just know you will hit this new challenge head on.  It's not what you ain't got , its what you got, that is important ; ) xx


#11
Your diagnosis consumes you for a while and then thank goodness life gets in the way. Then you live with PD and hopefully 2017 will turn out not as bad as you thought. Happy New Year all. DivineR

#12

Hi TeeHee, Idj and DivineR,


What a kind lot you are....a very Happy New Year to you and yours too!

Been back to work today and had decided to tell my Head Teacher mid week, but found a quiet moment. Proud of myself as didn't blub and she was  very understanding and supportive. It was lucky that she has a friend who also has PD! Feel a weight lifted off my shoulders.
 I'm sure now that I am back to work, can put things back into perspective.


Thanks for your suport and kind words when I was feeling low and sorry for myself. Very much appreciated.


#13
That's great. I found it hard to tell people at first as some reacted too emotionally for me. But once it's out there its a relief and much less stressful for you. Stress does not go well with PD. Your Head Teacher sounds compassionate and understanding so you should at least feel safe in the workplace. You've made the first step of many. DivineR

#14

Yes, it was empowering and she seemed very keen to help in any way she could, asked if anything needed tweaking and was keen to join me on the PD "journey" together. Phew!

 


#15

Well done you. Are stress free now and that makes it half the battle 

tooraloo Ian x


#16

Pleased it went well and you are feeling a lot brighter.  If you have your silly head on please join the conversation on New to the group, there's a mad Scotsman, and a lovely lady sheila and of course some more Parky babes.  Dont be a stranger xx


#17

 

Hi HOgg1t - congratulations on your 'coming out' glad it all went swimmingly and you feel good about it! My company were also very understanding about it, when I was working, but retired now. Stay positive and keep your chin up, but most of all keep smiling through.........

All the best - Sheila x


#18

Tremor on right hand getting a bit out of control but where there is a will there's a way.?..why worry about taking so long  to put mascara on without ending up looking like adam ant..just booked an appt for next week to have Russian lashes fitted, then you have infils every 3 or 4 weeks.  waterproof and stay on all the time no more piggy eyes YEAH.  Just had to mention wanted them natural looking Cos at my age might end up looking like a man in drag.   Top Tip for today big grin


#19

You ok hoggit mcfloggit . x


#20

I like my name (H0gg1t McFloggit) I'm going to stick with that!). I'm OK thanks. Just got bogged down with the many FB PD pages sorry. Have learnt my lesson, not to ignore my PUK friends!