Forum virgin seeks advice


#1
Hi all. 50 yr old Oldham Athletic fan living in Leeds, recently diagnosed at start of September. I feel slightly fraudulent as my symptoms don't yet include the involuntary shaking apart from some slight but noticable tremor in right hand when eating sometimes. Went to see my GP after noticing certain changes in my movement. About a year ago my son and wife commented on why my right arm didn't move when I walked and for the last 9 months I noticed my handwriting deteriorated from really quite beautiful and neat to a scrawl and jumble of imperceptible letters and lines! Plus I struggled to make certain movements when brushing my teeth and often slapped shaving foam on to find my hand seemed stuck and needed some thought and will power to spread across my stubble. I also noticed a change in movement of my right leg and sometimes catch my heel first when walking. Which explains the ungainly movement when I've gone running, although knackered knees and achilles haven't helped. My sweet 17 yr old lad says I run and walk like a gimp - whatever that means. I don't dress up in rubber or wear a mask with zips I hasten to mention!

The advice I'd like to ask is how to tell my son and when. Well, perhaps the advice is more for my wife. I'd be happy to tell him and let him know that I'm no different to how I was before he knew. My wife wants to hold off perhaps beleiving that I won't deteriorate and he will be an adult before we need to let him know. She also knows that he worries about health issues and will look up the worst case of Parkinsons ever recorded, convince himself that I'll end up like that and that he is bound to get it as well. He also saw my step dad have quite bad tremors before he died a few years ago.

My wife tends to lean towards being very private anyway which means we have hardly told anyone apart from one friend, some family and my line manager. I almost feel disengenuous keeping stuff from my close friends. My wife is afraid everyone would somehow treat me differently and it would be the only topic of conversation. I don't think that at all. I'm not ashamed and to some extent embrace my condition. It certainly doesn't define me. And to some extent I feel keeping it a relative secret means it is defining me.

Oh heck, I've rambled a bit haven't I. Aplogies and also for poor spelling - I blame my right arm/hand! I always needed an excuse! Anyway, all suggestions would be great about dealing with my lad and once he knows, about being more open with friends, etc. If nothing else, if I can get round to running again, perhaps I could run and raise money for Parkinson's UK. Perhaps I could persuade my son to run wih me even. Now I am dreaming!!

I look forward to joining in conversations with you all and taking inspiration. Have a great weekend!

:)

#2
Hi Bunty Blue

When I was diagnosed 9 yrs ago, my children were aged 8 and 13. I told the children straightaway. I was concerned how they would react, especially one of my sons as he is a worrier. They were fine about it. Parkinsons affects sufferers differently. I did get a book about Parkinson's from Parkinsons UK for the children, but they were not interested in reading it. They just carried on with what they were doing. I told my friends and relatives about my diagnosis soon after. They have all been ok about. I am still the same person. I have Parkinson's but it has not got me. It is hard accepting Parkinson's for everyone but you can still enjoy life. I certainly do!

#3
Hi Bunty Blue.
It's hard isn't it, knowing the best thing to do in the dilemma of who to tell such a personal matter.
I approached it on a 'need to know' basis. This was a sort of self-protection issue and I think I got it wrong as regards my daughter , just in early 20's at the time.
She lives in another part of the country and I wasn't seeing her all that frequently , although we phoned every few days.
I remember I was trying to protect her and not give her another worry. In fact, when I did spill the beans , she was a little hurt that it seemed she'd been deprived of supporting me. All was soon fine and to be quite honest , I just get on with life now , and it's good.
Emphasise to your son, that the condition is markedly different in every case. I regard this as a blessing, because I now don't take any notice of how others tell me how it will be.
As no-one I know has the gift of second sight yet, I'm quite reassured on this point.
I've been dx 2 years now. I continue my part time job, ride my bike, walk as much as I can, go to dance and exercise classes twice a week, and am generally in good health.
I'm in the middle of a home improvement plan , and am enjoying shinning up ladders to slosh the paint about. I may not be as quick as I used to be, but hey, what's the hurry anyway.
All the best
Lorna

#4
My advice is - tell when you - I said YOU - think it is right. Don't keep it to yourself too long because it is not going to go away! Just give them the facts and say when you want help - you will ask.
Be optimistic, stay positive, keep meds to a minimum, work as long as you can, save money and don't burden your nearest and dearest too much.
Keep smiling and if you want to talk - you know where to find us.

Lin
xx

#5
Hi and welcome,

You know your own son the best and I'd tell him when your ready, my eldest is 17 now and he was 9 when I was diagnosed he's know from the start, the youngest 2 were 4 & 6 so I didn't tell them until they were older. All of them have been fine with it and they understand if I have a bad day but I try not to let PD take over my life and stay as positive as I can, try to carry on as normal and this will show everyone that it's not the end of the world you can still have a life with PD, yes some things change over the years but these changes tend to be gradual.

I get the feeling that your wife is having a difficult time accepting your diagnosis, (forgive me if I'm wrong) it's understandable that our partners and families will have concerns about the future but I feel that you can't really move forward without having that acceptance. Maybe some people will treat you differently but in my experience most people just carry on as before.

Take Care!

Gill.x

#6
Hi Bunty Blue and welcome.

For myself, I told anyone and everyone. This isn't going to go away and MY way of dealing with it is to be very positive and get on with life. My youngest daughter was 20 and going through her final year at Uni. She took the diagnosis badly and for a long time couldn't tell anyone about it. However, two years, sorry three years now, down the line she can see that I haven't changed and is much more positive and able to joke about it with me - "sorry Mum, I can't walk arm in arm with you now because you walk funny!!". Maybe your son already suspects something is wrong, and could be worrying that it's a lot worse than it is. Personally, I would tell him but keep it light. He's 17 years old and they are surprisingly resilient. However, it's your choice and whatever you decide I hope it goes well.

Good luck
Jane

#7
Thanks everyone for your really helpful advice. It's certainly a better response than I get when I post on an Oldham Athletic message board! Guess the subject matter is a bit different though!

I really appreciate the messages of support and look forward to being more involved on here. I am trying to embrace social media, if only as a means of knowing what my lad is up to in his life!

Take it easy and talk again soon.

:)

#8
Hi Bunty Blue,
Just read about your dilemma and everyone's really helpful response. My heart goes out to you because I feel very similar. I was diagnosed two months ago but still haven't come to terms with it. I have two adult sons and live on my own so not being able to talk things through makes acceptance difficult, especially as until this, I have been very healthy. I don't want to burden my children, although they both know. One of them was very upset...

I've always been a very private person and having to 'come out' with what's wrong makes me cringe so I keep silent. But sometime the tremor in my left hand is obvious, but when and if people comment on this, I find that rude and it makes me angry despite my friends saying 'people care'. I prefer to keep my feelings to myself.

Maybe when I've accepted it myself it'll be easier but I don't know when that'll be. At the moment I feel like going undercover. :frowning:
Maryowen

#9
Hi Mary owen,
Go with your instincts I'd say. The feeling of wanting to be under cover is perfectly understandable. It takes time both to want to, and learn how to, deal with other people's remarks and behaviour.
Some friends will surprise you in a good way. Others will disappoint. Don't worry about their negative attitudes and responses, but concentrate on being in the company of those who are cheerful and lift you.
Remember that we all have different forms of the condition and you will do better if you focus on doing the best for yourself.
There are some very lovely people on this forum who surprise and encourage us with how they enjoy their lives and what they achieve. Take inspiration from them.
It may take a while to sort out the best and most effective meds. for you, but you'll get there.
All the best.
Lorna.

#10
Hi bunty blue/I also live in Leeds and was diagnosed in March. Should I say at this point if you decide to take up running in rubeer and a mask let me know where and I'll take a look.
I told my family and friends straight away as they had noticed some changes already and I knew I would need their support. They haven't let me down. You know your son best and there is no right or wrong. whatever you decide Im sure it will be right for you.
There is a pd uk group at St Chads in Headingly on the second wednesday of the mmonth, and through them I attended a very informative evening at the Playhouse which had speakers including a neurologist, pd nurse, physiotherapist, speech therapistand others - a good chance to get any questions answered. Good luck -Pat

#11
Hi

I have 12 year old twins and told them that I could have Parkinson's I have all the first stage symptoms.I told them the worse I could get.the girl has cerebral palsy and diabetes and been through alot of ops and pain.she just said get on with it you wimp.the lad has aspergers and he said right now what's for tea.

You never know a persons reaction to Parkinson's but you sons reaction might be worse if you don't tell him.it's an added complication.if you do tell him be positive and tell everything you know.and answer his negatives with a positive.get him to run or swim
With you to keep fit.time doing things together is time better spent than worrying.

Rob

#12
There is no stigma attached to PD so what, who the hell cares that much with your friends & relations. I told everyone I know & have not had any negative feedback. in fact everyone is very kind & my fellow golfers even pick the ball out the hole for me. People can be very understanding so go for it & tell it like it is.

#13
I personally want to tell people over time. Close friends who knew I was going for the brain scan have been told as they asked about the result. I havent told my family yet (diagnosis one month ago) because I want to choose the right time not to upset certain members.

I wont tell my young children yet as it would only upset one and the other would say as Twins boy TBH and wouldnt get it.

I would prefer to tell the world more when it is obvious that I show signs of PK. It isnt yet to the casual observer so I will wait a while till I tell the world.

I think I dont enjoy the reaction as it has upset several friends.

#14
I told the world I had PD on my blog. I don't think there is a stigma attached and nobody treats me differently. The only person who doesn't know is my 93 year old mother who already has too many health problems and doesn't need another thing to worry about. My children are all adults, 35, 30, 27, and took the news well. I know they worry about me when they are not busy living their own lives with their own children, but otherwise, they still see me as their "dad" and look to me for advice. In reality, not much has changed. Thankfully the amantadine and mirapex keep the tremor at bay. If my symptoms were noticeable, who knows? I might think differently but probably not.

#15
I guess running in rubber might aide weight loss but just think of the chaffing!! I read about the monthly meetings in Leeds. Might pop along if I can get time off work. Thanks for your message. :)

#16
my daughter was six when she was told. She is now 16,17 in January and it is the best thing I ever did. Why?
Very simply it would have been patronising not to have told her.
People know far more than you give them credit for.
He will resent it if you do not tell him.
He will want to be part of it.
Believe me people stop talking about it soon enough.
You need him.

mrs.t. You sound as though you have a sense of humour: it will stand you in good stead. All the best.