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Old 05-12-12, 04:26 PM   #1
Allan
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Default What a bunch of ..........

Hi Jacqueline, Cupcake, Sue, Trish - and everyone else on the messy board ……..

I was just about to thank you all for your responses to my recent postings when I decided to have a look through all your old postings. What a shock\surprise – you’ve all been “at it” for years. You are truly amazing people. To put all your time into caring, to share the highs and lows – the humour and the despair, to be there for others just starting out in the minefield + mindfield of HD and all the uncertainty that it brings. I feel very humbled to be in your company here – where there are no distractions and I can think quietly whilst putting digit to keyboard.

It’s a sort of “calming place” where we can all let off steam, ask sensitive questions, receive fully understandable answers, and then collapse, exhausted, in a quiet heap. I’ve looked at some of the American HD websites and, well, they’re a bit “flowery” and not down to earth like this message board where anyone is allowed to rant’n’rave - or just ask a simple question.

Since the end of September I’ve visited all the HD websites – and more, tried to read loads of medical and clinical HD stuff online, won an ESA tribunal and DLA reclaim for my son S, spoken to several re-housing people, Adult Social Care inc. Social Worker & OT, been in contact with GP and surgery, Neurologist at local hospital plus others at the NHNN in London where S has his regular [and very worthwhile] appointments.

But nothing beats the messages that I read here, in all categories, for good advice, support, the sharing of the highs and, more often, the lows – and the magnificent fortitude-courage-strength-resilience that you all bring to this message board.

I’m not religious but I think Mother Teresa talks a lot of good sense:

"People are often unreasonable, irrational, and self-centred; forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives: Be kind anyway.
What you spend years creating others could destroy overnight: Create anyway.
If you find serenity and happiness, some may be jealous. Be happy anyway.
The good you do today, will often be forgotten. Do good anyway.
Give the best you have, and it may never be enough: Give your best anyway."

Thank you

Allan
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Old 06-12-12, 12:10 AM   #2
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Default Re: What a bunch of ..........

Hi Allan

I think like Jacqueline, it is somewhere where I can find alittle support and somewhere people understand how I am feeing.

Like Jacqueline I seem to drop in and out, I always look but don't always post, especially if I am feeling down and negative, as people or I should say friends need lifting sometimes not being burdened down by my woes. There have days when I have been so down help and advise hAs helped along with odd poem from Trish. Crying is a great stress release, and eventually you pick yourself up.

I don't think I am as strong as I would like, and am horrible to hubby sometimes with my frustration of his illness, when I cant see or reason with the person I fell in love with. We get over it, and move on, and deal with the new challenges in our life.

Take care xx
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Old 06-12-12, 07:53 PM   #3
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Default Re: What a bunch of ..........

Similar to Cupcake and HRH Jacqueline. I've got a high post count because I've been here a while and used to post an awful lot of cobblers. Now? Head in the sand most of the time and I only reply to things if I feel I've something worthwhile to put up or I can relate directly to that persons situation. Thing is most people on here are dealing with so much more, have it far far worse than me, that there is very little I can add. I just sit here and count my blessings...
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Old 06-12-12, 10:31 PM   #4
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Default Re: What a bunch of ..........

Quote:
Originally Posted by jacqueline View Post
I dont see your Flic on FB now either. Is she OK?
Apparently Facebook is old hat and she's grown out of it!
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Old 06-12-12, 10:43 PM   #5
Cupcake
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Default Re: What a bunch of ..........

Quote:
Originally Posted by DH View Post
Similar to Cupcake and HRH Jacqueline. I've got a high post count because I've been here a while and used to post an awful lot of cobblers. Now? Head in the sand most of the time and I only reply to things if I feel I've something worthwhile to put up or I can relate directly to that persons situation. Thing is most people on here are dealing with so much more, have it far far worse than me, that there is very little I can add. I just sit here and count my blessings...
Hi DH

I don't think you have posted a load of old cobblers. Some days it just helps to write something to off load the stress we are feeling , and sometimes people are dealing with a lot worse than us, but by us replying it sometimes help just to know someone understands you.

Take care xxxx
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Old 06-12-12, 11:53 PM   #6
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Default Re: What a bunch of ..........

Quote:
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I don't think you have posted a load of old cobblers.
You didn't read my deleted posts

But I don't reply enough, I should get back to posting more. We all have our niche on here; Trish is able to post heaps of well researched practical advice, Myrna understands JHD, just1moreperson motivates us all and HRH Jacqueline the Queen Mum keeps us all in check. Dennis is always there as the voice of reason. Everyone has a voice and everyone has a valid point of view. My niche, as Matty is fed up with me saying, is reminding people that the birds will still be singing in the morning and the sun will still be shining.

We are such infinitesimally small particles in an infinitely large universe that we don't really matter. What we do has such a small impact that it isn't really worth worrying about. At some point we are all going to die; the only exciting part is not always knowing the how or the when. The rest is just fluff.

I do sometimes wonder why I have a career in health care...
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Old 07-12-12, 12:56 AM   #7
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Default Re: What a bunch of ..........

Well, I'm glad I've got you all roused.

You are the brilliant people who get us newcomers involved and talking about all this horrific upheaval in our lives. Talking about it helps us all. We are all different but here, on the HDA message board, we're all the same.

I've just arrived home from my 1st genetic counselling session in London which I really enjoyed, mainly because I met up with an old friend from the 60's - we had several beers in the Museum Tavern, chatted to a couple of Norwegian ladies - and I probably snored all the way home on the train.

Tomorrow, I'm back to the usual treadmill of sorting things out for my son, S, but today was good for me. I also sat in the National Gallery and looked at a single painting for endless minutes. I normally spend endless hours doing things for S. Today was my day.

Rock on

Allan
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Old 07-12-12, 04:21 PM   #8
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Default Re: What a bunch of ..........

Hi Jacqueline

I'm originally from Barrow-in-Furness which was in Lancashire when I were a boy - it's now in Cumbria. I'm now living in East Sussex - next door to Kent. I've been researching my family tree for the last 8 years. No hint of anything like HD in my tree or my ex-wife's tree.

If you want to find your ex-brother-in-law send me a private message with his details and I'll use my family tree resources to try and locate him.

I've got a son and a daughter, a brother and 2 sisters, 5 nieces, loads of cousins. But as you go back in time most families were a lot bigger, so as it spreads out with grandparents and their kids I suppose it was a biggish family - but they're all popping off at regular intervals, even my older cousins. But not a hint of HD anywhere. It's the same in my ex-wife's small family - nothing ....... except our son.

So, that's the reason for our genetic testing - it must come from one of his parents, and the odds are that it's more likely to be me.

I'm off for a walk along the seafront before the sun disappears.

Bye for now

Allan
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Old 07-12-12, 09:13 PM   #9
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Default Re: What a bunch of ..........

Hi Allan,

Sorry to hear things are escalating but you are doing an amazing job!

I'm not in as much these days (my Thread TTFN refers) but I will try to look out and help if I can direct people to resources in any way.

Talking of which, I know it doesn't help if the key is in the door for anyone to get in but we had a service called Telecare. Might be worth having a chat with them about ideas if you haven't done so already Telecare East Sussex
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