Welcome ...

Allan · 10-01-18, 01:12 PM

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Hi there to Spanishgraeme, Jomhv, Ange<3, RoxyT, Hopeful10, Jeanie, Nutty sarah, Maia burnip, Runningmum, Hoping81, Jojo, biskit and others who’ve joined and posted on the MB over the past 6 months or so.

The regulars that were here a year or so ago are, I would think, tied up in their own family hd-situations at present. Group bonding does develop over a short time, especially when everyone rants’n’raves about their own impossible situations - and expresses the honest truth about this god-awful disease.

Realising that people weren’t going to be here every time I wanted to let off steam or ask questions I started "Searching" the MB archives (going back to 2006), looking for anything and everything that was relevant to my son’s particular HD predicament. There is a gold mine of information there - if you can get to it.

In many of my posts I include weblinks to relevant social and recreational therapy sources and specific research papers. Other members do similar with links to Insurance, PIP, Testing, PGD, etc. So, careful searches will bring up relevant info.

Believe it or not, we do have a regular laugh and a joke - and we often raise a “virtual” glass of something alcoholic to each other through our continuing endeavours.

A warm welcome to you all …

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banda · 10-01-18, 08:53 PM

Hi...you always hit the right note Allan...well done you for being so welcoming. As you rightly say I am so engrossed with things here I have nothing left to give but rest assured my thoughts are with everyone on here. Axx

Trish · 10-01-18, 09:23 PM

I echo what the Man said, and what the Lady said too.

Search has been the most useful tool to find out stuff and, God knows, I gained a LOT of insight into HD and caring for someone with HD on long evenings trawling through the Message Board. Word of warning though, it can be as addictive as gambling. Only diference being "when the fun stops [at home], start [searching]!"

If I had my way I would replace every nurse; specialist; GP; care worker/social worker exam paper and make them read 1,000 posts in here. Then test them on what HD actually is and how they think they should work in the sector of health and social care

If you can deal with HD and all that it brings with it you are fit to work with ANYONE

Jeanie · 11-01-18, 05:05 AM

Hi Allan.

I have never used a forum before but like to log in about once a fortnight to see how everyone is. Thanks for the welcome. Its useful to see the other side of HD from the carers point of view as well as my own. I am hoping that by reading about how difficult it is for partners/spouses, it helps me to help my hubby help me (gosh a lot of helps there).

Ange<3 · 11-01-18, 01:28 PM

Quote:

Originally Posted by Allan

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Hi there to Spanishgraeme, Jomhv, Ange<3, RoxyT, Hopeful10, Jeanie, Nutty sarah, Maia burnip, Runningmum, Hoping81, Jojo, biskit and others who’ve joined and posted on the MB over the past 6 months or so.

The regulars that were here a year or so ago are, I would think, tied up in their own family hd-situations at present. Group bonding does develop over a short time, especially when everyone rants’n’raves about their own impossible situations - and expresses the honest truth about this god-awful disease.

Realising that people weren’t going to be here every time I wanted to let off steam or ask questions I started "Searching" the MB archives (going back to 2006), looking for anything and everything that was relevant to my son’s particular HD predicament. There is a gold mine of information there - if you can get to it.

In many of my posts I include weblinks to relevant social and recreational therapy sources and specific research papers. Other members do similar with links to Insurance, PIP, Testing, PGD, etc. So, careful searches will bring up relevant info.

Believe it or not, we do have a regular laugh and a joke - and we often raise a “virtual” glass of something alcoholic to each other through our continuing endeavours.

A warm welcome to you all …

.

Hi thank you for the welcome message :). I have found your posts really helpful to read when I've been having a good browse through so thank you for taking the time to put them on here it's very helpful for us newbies.

Ange

Ange<3 · 11-01-18, 01:32 PM

Quote:

Originally Posted by Allan

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Hi there to Spanishgraeme, Jomhv, Ange<3, RoxyT, Hopeful10, Jeanie, Nutty sarah, Maia burnip, Runningmum, Hoping81, Jojo, biskit and others who’ve joined and posted on the MB over the past 6 months or so.

The regulars that were here a year or so ago are, I would think, tied up in their own family hd-situations at present. Group bonding does develop over a short time, especially when everyone rants’n’raves about their own impossible situations - and expresses the honest truth about this god-awful disease.

Realising that people weren’t going to be here every time I wanted to let off steam or ask questions I started "Searching" the MB archives (going back to 2006), looking for anything and everything that was relevant to my son’s particular HD predicament. There is a gold mine of information there - if you can get to it.

In many of my posts I include weblinks to relevant social and recreational therapy sources and specific research papers. Other members do similar with links to Insurance, PIP, Testing, PGD, etc. So, careful searches will bring up relevant info.

Believe it or not, we do have a regular laugh and a joke - and we often raise a “virtual” glass of something alcoholic to each other through our continuing endeavours.

A warm welcome to you all …

.

And I look forward for the virtual glass raising! Cant say its something ive done before!

Crystal · 11-01-18, 05:47 PM

Quote:

Originally Posted by Allan

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Hi there to Spanishgraeme, Jomhv, Ange<3, RoxyT, Hopeful10, Jeanie, Nutty sarah, Maia burnip, Runningmum, Hoping81, Jojo, biskit and others who’ve joined and posted on the MB over the past 6 months or so.

The regulars that were here a year or so ago are, I would think, tied up in their own family hd-situations at present. Group bonding does develop over a short time, especially when everyone rants’n’raves about their own impossible situations - and expresses the honest truth about this god-awful disease.

Realising that people weren’t going to be here every time I wanted to let off steam or ask questions I started "Searching" the MB archives (going back to 2006), looking for anything and everything that was relevant to my son’s particular HD predicament. There is a gold mine of information there - if you can get to it.

In many of my posts I include weblinks to relevant social and recreational therapy sources and specific research papers. Other members do similar with links to Insurance, PIP, Testing, PGD, etc. So, careful searches will bring up relevant info.

Believe it or not, we do have a regular laugh and a joke - and we often raise a “virtual” glass of something alcoholic to each other through our continuing endeavours.

A warm welcome to you all …

.

What a good idea again Allan......a collective warm welcome to those new to the MB. I'm far too hit and miss with responding to many posts these days, as yet another 'crisis' seems to overshadow everything!.... Sometimes, it's difficult to find a response...especially when some of the recent posts have been so difficult to read and needing so much more than a quick reply and some sort of reassurance. As you say though, there is always room to share a laugh and joke.....and there haven't been too many of those posted of late.....must try to change that!....... raising a glass not a problem!....... and I raise a glass to the person who got 'Carer of the Year' award......because hubs has just informed me I didn't get it this year! (apparently I did for the last couple of years!?) gutted or what!!.... didn't come close apparently... certainly not runner up then!!.......so, as I said I raise a glass to whoever pipped me to the post!!.........(just a little bit of humour to get us started!)

Best wishes everyone
Crystal

shiraz · 12-01-18, 06:03 PM

Crystal...tis I...Carer of the Year!! Thankyou sweetie for raising a glass to my success...I've raised a few myself....part of my prize

I'm sure I'm not worthy

I check in to the Messy every day still at some point and echo what you say...not responding isn't coz you don't care, can't be bothered etc, it's often because you are "emotional" yourself, battling situations and juggling everything yourself and feeling, in a way, useless. Like...nothing you say will help or can help. I've come through some rotten times with my husband, hd wise, and sometimes even remembering them can cause a real turmoil in my heart. My own situation is that things have gotten better 'for me' as he's gotten worse 'dementia' wise....he's gone clingy and childlike but is "nice" and it makes it easier to cope - no more eggshells and tears. Now things are pretty calm, if boring and mundane, but that's a relief and we bob along quite nicely. I just hope the peace I'm experiencing here were the same for us all....and that long may it continue. xx

Jomhv · 12-01-18, 10:56 PM

Quote:

Originally Posted by Allan

.
Hi there to Spanishgraeme, Jomhv, Ange<3, RoxyT, Hopeful10, Jeanie, Nutty sarah, Maia burnip, Runningmum, Hoping81, Jojo, biskit and others who’ve joined and posted on the MB over the past 6 months or so.

The regulars that were here a year or so ago are, I would think, tied up in their own family hd-situations at present. Group bonding does develop over a short time, especially when everyone rants’n’raves about their own impossible situations - and expresses the honest truth about this god-awful disease.

Realising that people weren’t going to be here every time I wanted to let off steam or ask questions I started "Searching" the MB archives (going back to 2006), looking for anything and everything that was relevant to my son’s particular HD predicament. There is a gold mine of information there - if you can get to it.

In many of my posts I include weblinks to relevant social and recreational therapy sources and specific research papers. Other members do similar with links to Insurance, PIP, Testing, PGD, etc. So, careful searches will bring up relevant info.

Believe it or not, we do have a regular laugh and a joke - and we often raise a “virtual” glass of something alcoholic to each other through our continuing endeavours.

A warm welcome to you all …

.

Hi Allan

Thank you for your welcome. Even though not many people respond to our cries for help just having one or two who can say yep that's how I feel too made me feel not quite so alone and that maybe the way I'm feeling is quite normal . This has been a big help to me especially as I was feeling incredibly guilty about not having enough compassion. The phrase " remember it's the disease not the person" really doesn't hold much sway with me when my children are being traumatised. Do what you like to me but don't hurt my kids!

The term you used "impossible situation" rings so true. I guess a lot of people fall by the wayside in this forum as no matter how much we rant, rave, complain, ask for help etc etc in the end we are still living in a nightmare we can't wake up from.

I read somewhere on here that this forum is being shut down. Do you know if this is still the case? Also is it possible to edit a post once it's been posted? I haven't had a response to this question having emailed help.

Thank you

Allan · 13-01-18, 12:03 AM

Quote:

Originally Posted by Jomhv

I read somewhere on here that this forum is being shut down. Do you know if this is still the case? Also is it possible to edit a post once it's been posted? I haven't had a response to this question having emailed help.

Thank you

Just a quickie to answer your two questions. The Message Board was going to be transferred to another website - but that is not the case now. It is here to stay.

Editing: always preview your post b4 submitting it. When you have posted your message you can Edit it within a certain time span or before it is read by others. Watch this space.

Also, I think it was you, but maybe not, who lost a long message prior to posting. I always prepare my messages in Word and then cut-and-paste into here.

I think many of us have lost so many prospectively good posts in this way. I use a laptop but I realise that iPads and similar can be treacherous when trying to post lengthy messages.

Ok, I'm going to post this - and then edit it. I've just noticed that I've used b4 twice instead of before - so I'll correct one of them.

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