SURVEY

[jinasc]

This was posted on the Vasculitis Thread.

I suggest you all fill it in and also try and get your family and friends to do the same.

healthunlocked.com/vasculit...

Leeds Hospital are doing a survey on side effects of steroids.

Most of us have a story to share!

What I find interesting is that they give the opportunity to carers/family have their own say.

If you could complete the survey and share the link for carers/family, it would be appreciated.

Site for patients: eur03.safelinks.protection....

Site for carers/ family: eur03.safelinks.protection....

PMRpro posted re the same survey 2 years ago.

Fill it in - we all have time and everyword typed means we contribute to research.

[PMRpro Ambassador]

Thanks for the reinforcement for people who didn't see my post the other week.

Warnng: the graphics don't always work easily on certain devices so if it doesn't work first time try another if you have one.

[jinasc in reply to PMRpro]

No problem - I just thought that as its ongoing - we need to get responses. After all researchers are working hard and they don't ask for info unless they need it. xx

[Longtimer]

Done......👍

[jinasc in reply to Longtimer]

Ta muchly...........😊

[Zebedee44]

I’m happy to do it and it certainly made me think about my family’s understanding and acceptance, or lack of it. They wouldn’t have a clue how to respond to this survey so I haven’t asked them. It’s a lonely illness I find, made far more tolerable by this excellent forum and you lovely dedicated ladies.

[jinasc in reply to Zebedee44]

healthunlocked.com/pmrgcauk...

Bribe them to sit down and look at the DVD called 'You are NOT Alone'

Made for New Patients, Family and Friends mainly because trying to explain an auto immune illness when you general look OK is a bit of an uphill struggle.

I lost two friends and then when we made the DVD I posted it to them They came to see me and apologised - we are still friends.

Hopefully they will get the idea of PMR and GCA.

[Constance13 in reply to jinasc]

I can't get to you jinasc

[DorsetLady PMRGCAuk volunteer in reply to Constance13]

Have you tried messaging... or emailing? I will contact and tell her....🌸

[jinasc in reply to Constance13]

Just in case this is a back up so sent you a JL and an email will be winging its way.

Love and lots of it.

jinasc xxxxxxxx

[Constance13]

so

[Constance13]

Many thanks for your concern and interest. We are are doing quite well - considering. I will never r able to go home,, unfortunately, as I am bedridden and David couldn't cope.. I am in a very well run home. People are friendly and they look after me very well.

I have a nice large room with a lovely view.. David comes to see me three times a week.

[DorsetLady PMRGCAuk volunteer in reply to Constance13]

Glad to hear things are as good as they can be for you….not ideal, but so long as you are well cared for and David can get in regularly that’s good 🌸

[PMRpro Ambassador in reply to Constance13]

Good to hear from you - is your view of a nice garden like the one at home?

[Constance13 in reply to PMRpro]

Nlt SO good, but very nice.

[Nextoneplease in reply to Constance13]

Hi Constance 😊

I’m so pleased to have come across this post. I’d been wondering how you were doing x

Am sorry to hear you’re not so well, but it sounds as though you’re in a pleasant and friendly place, and it’s good that your husband can visit regularly.

Keep smiling - we need to hear from you 💐💐xxx

[Constance13 in reply to Nextoneplease]

Hi NTP. Lovely to hear from you. Not doing too badly, considering - I didn't die after all!!😂 I can't walk or anything, but at least my head stayed where it was - and as clear as an 83 yo can expect!

Hope life is treating you well. What I would give for a week or two on the Broads!!

Lf Constance

[Constance13 in reply to Nextoneplease]

Got the wrong person yesterday, didn'I I? Got names muddled up. So sorry!

Where do you live?

Lf Constance

[Nextoneplease in reply to Constance13]

hi Constance 😊

Actually I hadn’t noticed but now that you mention it - yes, I think you may have mixed me up with someone else! I just thought, yes, I fancy the Broads too 😂

I live in the Cotswolds btw xx

[jinasc in reply to Constance13]

Got your reply to me direct so heaved a big sigh of relief. Now you need to get someone to take some photos of your new place of residence and the nice view.

Love and lots of it. xxx