Dx yesterday


#1
Apparently, for the first time in ages 43 is classed as young, well, at least in relation to Parky. Everything is surreal, like it is happening to someone else or that its all a Dorothy like dream and I'll wake up in Kansas soon, which would be odd as I live in Tunbridge Wells. I'm going through some weird thoughts about becoming a Parky Activist, raising money and awareness through local campaigns and so on....and then all I want is a quiet life with my wife and 5 yr old kid. It's unpredictable in my head today, can't sort out what's fantasy and what's real. Maybe I wanna be a UK Michael J Fox but isn't he rich, famous, Canadian and about 4 foot tall? I've just bought his book but I'm told it's, like, compulsory for Parky newbies like me?

Life changes but I don't want to be dictated to by the shadow of 'old Parky' that said I have no idea what the future holds. My wife is the breadwinner as I went to work part time and was a stay-at-home dad looking after my son for the rest of the time. I am really upset/guilty for my wife, E, as our plan was I'd go back to work full time once D was in secondry school but now we have no idea if that will be possible with 5 more years of progression of old Parky. I was, am, halfway through an OU degree and the plan was to to be a Teacher but the reason I went to the docs in first place was because the studying was magnifying Parky symptoms, e.g. writing that looks like mouse scrawl and typing that give me a headache cos it takes so much concentration to hit the right keys. Will I even be able to finish the degree, do I even want to finish it? Will a near-fifty year old with Parky who finds writing really strenuous be employable anywhere? For that matter is Teaching practical with Parky??

Answers on a postcard please. (actually, does anyone send postcards anymore, I must be showing my age even if Parky has taken me young)

I bought E some flowers and a card today, kind of a 'sorry I've got Parky' offering. Don't know what else I can say...

#2
I have to say that I enjoyed reading your post. Nice balance between humorous and serious.

Tunbridge Wells is very pleasant - my mother in law used to live in Rusthall.

You must be a very caring person to feel guilty about getting an illness (VDs excepted) - many people get angry.

No-one knows the future, but if you look after yourself an get the right medication I would think you should be able to complete your degree - many people on this site have done just that, many are also teachers and could maybe give advice on that front.

It will take some time to get over the shock but normality should return, if not unaltered.

Looking forward to hearing more from TW.

cheers

#3
Hello Digs
Yes, it's odd isn't it, getting a diagnosis. How is one supposed to behave? I recognise the handwriting issue (mine so bad I simply gave up taking notes in meetings) and the typing - I type all the right letters, just not necessarily in the right order.

Both got somewhat better for me when I starting taking the drugs. But then I am an old hippie.

Six months in for me isn't that long - but I'm still hard at work and very few people know I have PD. I'd champion your right to continue with your course.

And yes, I felt guilty too.

Cheers

Semele

#4
Hello Digs,

I second what Turnip said, I so enjoyed reading your post. You come across as a lovely fun loving guy, and a bit of a comedian, your the sort of person that should always write, so don't give up or even think of giving up on anything. You are young and strong, and have a loving family. I remember reading that 1 in every 500 people are dx with PD, all different ages, all with different symptoms, all from different back grounds. However the one thing I have realised that they all have in common is they are all amazing people, and so very very positive in everything they do. The members on here are all so knowledgeable about PD and the medications, in fact the majority of them lead very full and active lives, even more so than people who do not have PD. My husband has PD only dx a few weeks a go, I would swap places with him if I could. I love him so much, I take all the advice from the lovely people on here, and I feel more positive and confident each day, planning all the things we are going to do. Keep Positive love hols x

#5
Welcome digs

Finish the degree, (but take your time over it if you need to, don't make anything an obstacle course) and living in Tunbridge Wells there must be opportunities for tutoring? With the experience of being first carer for your child, perhaps you could specialise in basic literacy or have you any musical talents?

#6
Hi Digs,
Now look on the bright side. I will show you how. You will finish your degree - I am also doing a degree course at college, Contemporary Creative Practise. (haha = Art)
I am definately not graduate material but I box through (being diagnosed about 3-4 years ago. It is a happy lfe and I am well looked after by tutors and peers, not only that (and I am not sure if this applies) but you may be entitled to a great deal of help from student services. It is really worth asking. I get a marvellous service and without this I could not give my degree please do ask.

Well once you get over the initial shock although it' bleak, you realise there is worse. There are some wonderful people in the Parkinson community who I hope you will need.
all the best speech or again I hope Jane

#7
Lol I have no idea what I mean in last sentence. Blame it on dragon

#8
Hi Digs,

Welcome. I know somewhat what you're feeling. I'm only just dx too at just 46 years. I have 3 kids (12 yr twins and 9) and after 10 years at home as mum I started my own business 3 yrs ago to help the family coffers. Well now I'm struggling with my job and winding it all up next week and not sold the business yet. I'm feeling guilty about this too, but not sure why. I have no idea what to do next. Waiting to see what happens to my symptoms when I start some treatment first I think. I'm sure once you've adjusted to the idea you will finish your degree, everything is a bit raw right now I should think. The tutoring suggestion for the future sounds like a good flexible possibility too. Good luck with it all.

#9
HI, Just wanted to say Welcome To The Forum! I am sure you will make plenty of friends here, and if you have any problems there is sure to be someone who can help.

#10
Hi Digs43
I used to live in StJohns and my daughter in HIgh Brooms - now on the Isle of Wight.
Good luck with your degree - contact the disability unit at the OU and you will be able to type your exam paper from home with extra time if you need it. They can also supply comb bound books which lie flat/ Definitely helped me to finish my degree 2 years after dx. And the sense of achievement certainly made me feel that life was not "going down the toilet" as they say.

Jenny

#11
Hey Digs and everyone else

Im 36, and was DX 4 months ago, im still trying to figure out what the hells going on. You seem very positive though serious as i think it can be scary when you try to plan for the future.

Im positive but constantly frustrated, still waiting for physio appointments, been chasing receptionsists, which can be the most annoying part.

Any suggestions to improve my movement and relax my muscles, and tired twitchy legs would be great.

#12
Hello and welcome to the forum Digs, there seems to be so much thinking going on for you right. This is only to be expected given your recent dx most of us have gone through it. I have been dx for 11 years now, I was 50 at the time. I went on to gain a degree and worked full time as a children's social worker up until 1997, when parkie begand to effect the way I worked, in addition to an unsupportive manager.

A dx is not the end of the world, it is the the beginning of another chapter in our lives, which involves some level of change and that sounds like it would fit neatly into you plans anyway. You said yourself that you had plans for your future and I see no reason why, at this point, they should change. You will learn to adjust things to suit you and your families needs. One thing I would advise is....if you have a mortgage, take a look at your mortgage insurance, some people have managed to have there mortgage paid off following a dx.I didn't know this when I was dx and over the years I have moved my mortgage around and changed insurers, hence I am still saddled with my mortgage despite living only on benefits.

Once again welcome to the forum, you will, I am sure, learn lots and get lots of support here, do take care.

Glenchass

#13
Hello Digs. So sorry about your diagnosis. It takes time to get your head round it. I'm a teacher. I'm nearly a year post dx now. I started on Sinemet pretty quickly and it had sorted out my hand problems and doing my job is fine at the moment. We're all different, of course - I can't remember if it was Turnip or Elegant Fowl who described it as a pick and mix disease. But don't rule out your career plans, for sure.

By the way, my husband was the stay at home dad and I just love coming home to a cooked meal and a clean house! Don't feel guilty - you've been doing a difficult job.

There are quite a lot of helpful blogs out there too.

Good luck.