Our AGM next Saturday 7th Sept.

[prunus]

Can I ask who, of our HU members, plan to attend our Annual General Meeting next Saturday? I have been a member of this forum since last September and would love to meet some of our members. I am hoping to go again. I have been for a year or two now.

[Theziggy]

Too far away for me I'm afraid - hope you have a good AGM

[prunus in reply to Theziggy]

Where are you/

[Theziggy in reply to prunus]

Enniskillen, County Fermanagh, Northern Ireland

[prunus in reply to Theziggy]

That is rather a long way.

[PMRpro Ambassador]

All being well I should be waking up in my own bed for the first time for over 3 weeks! Shame really - we could have come to the UK later and then gone on to meet our daughter in Bruges!

[jinasc in reply to PMRpro]

Not me, I was thinking about it..........as I really wanted to see some of my friends..........but looked at the Speaker and thought ❓

I did so enjoy the one we were at together all those years ago.

[prunus in reply to jinasc]

There are three speakers. Was it just one?

[jinasc in reply to prunus]

Yes, just one...............no names..............people have to make up their own minds.

The AGM will be interesting, it always is and, as always, you will learn and most importantly meet old and new friends.

I sometimes just cannot sit and listen to something which I know is plain wrong and has been proved over many years by patients, but because it is patients............. it cannot be right' and keep my big mouth shut tight.

Until proper studies done by experts (one small one has been done by an open minded researcher, which shows we are on the right track).

There would be no monetary reward at the end of this particular piece of research. So it won't be done until the NHS has some money to spare, which will not be in my lifetime or alternatively a Consultant with an open mind comes along.

It is not all gloom and doom, the age range in the new guidelines of both PMR & GCA (the latter not yet issued) has been reduced.

It took a lot of time and effort from Patient Reps who sat on those committees to get it reduced from late 60's onwards to 50 years onwards. There are still some people below that age who have a terrible time getting a diagnosis because they are too young. Sometimes I think medics should be educated in basic statistics especially in relation to 'bell curves' and think out of the box. C'est la vie.

[Longtimer in reply to jinasc]

I will be VERY interested to see what DR Muchtar (wrong spelling!) has to say about PMR, if he tells the meeting what he told me about lowering, he`ll be lucky to get out alive!!….

[jinasc in reply to Longtimer]

That is who I meant. However as I had never met him personally, I could not, in all honesty name him. I had heard of him.

How about you all download and print off the plans and shower him with them.

You can also tell him that Dr Sarah Mackie did a small study and it was published. If Sarah (who is a Patron is there) she should back you up.

Tortoise and Hare and Dead Slow Nearly Stop were the first two and have been distributed all over the world, and I mean that because I did nearly all of it..........always with the caveat 'check it with your Medics'. We did not get one person who said it did not work for them and they were able to reduce slowly without any steriod withdrawal symptoms and it stopped the 'yo-yoing' which caused some flares..........not all of them as stress is a big factor.

More variations are now available they are all on this site.

[prunus in reply to PMRpro]

You're lucky to be able to travel. I feel like I've had my wings clipped with my disabled husband.

[Marcy47 in reply to prunus]

I don't go far these days, hubby doesn't travel well after his 2 strokes and seizure. He went for therapy for PTSD last week, he got so upset talking about his time in hospital that he started getting another seizure, it put him back about 9 months. The therapy was recommended by the Stroke clinic!

[prunus in reply to Marcy47]

Very sorry to hear about hubby. My disabled husband cannot travel on public transport. It takes an effort to go on ones own and not share their company.

[Rugger]

Three of us are travelling down from Yorkshire, all being well. Let's hope there is time for 'networking' as well as listening to the speakers!

[jinasc in reply to Rugger]

Don't book seats on an early train back...............we let ours go and just got a later one.

So much to talk about after the meeting, although we had broken for lunch for an hour.

[Mary63]

I so enjoyed it last year, and met several forum members ( we arranged to meet for coffee beforehand). It was lovely putting faces to names. Can’t do it this year cos of my ******* knee.

[prunus in reply to Mary63]

Knees can be a big problem. Take care. Sorry for you.

[SheffieldJane]

Sorry to miss you Prunus. I am in Ibiza. It was a great day last year. People seemed just like they sound. Enjoy! Xxxx

[prunus in reply to SheffieldJane]

Wish I was there -enjoy.

[DavidMF]

I'm going, it'll be my 4th AGM. All have been enlightening and worth the trip, three my wife has attended, she loves the people and gets an understanding of what I'm going through, something I fail to achieve over 12 months.

[prunus in reply to DavidMF]

Hope to see you there. My husband cannot travel on public transport because of his legs unfortunately.

[Suet3942]

Must have missed the post re the AGM. Went last year and it was so nice to meet people that I had been chatting to on this forum. Can’t make it this year unfortunately,

[Hidden]

I haven't booked a place yet....despite wanting to attend with my other half. I'm worried I might not be able to sit through it all. I get quite stiff sitting through an hours meeting..let alone 4 to 5 hrs!

I'm also incredibly conscious people will judge if I do get up considering i "look" fit and healthy...

Now I'm even more sceptical knowing that one of the speakers may derail all I have come to learn and convey to my husband!!!

[SheffieldJane in reply to Hidden]

This is the one place where nobody will bat an eyelid whatever you do. I very much doubt that anything will contradict what you’ve learned here. X

[Hidden in reply to SheffieldJane]

Thank you for helping to correct my assumptions. I think we will give it a go...!

[PMRpro Ambassador in reply to SheffieldJane]

Ask Longtimer about that!!!!!

[Telian]

Hi Prunus, I did go last year and thoroughly enjoyed it. Putting names to faces is lovely. If we weren’t moving house I would be going again. I can’t take hubby as he’s disabled and it’s a military operation getting organised to leave him. Maybe next year. Enjoy!