A Determined Kiwi!

[hiandri]

Hi, I'm John, 69 living in Auckland NZ. I am a building consultant who is the country's 'expert' on brick veneer and wrote a book on it. Fortunately I can work from home and please myself what I do. I also invented Hiandri to solve the leaky building problem, so determined to contribute to finding a solution to this terrible condition PMR, which I have had for about 7 months. This forum looks excellent.

[DorsetLady PMRGCAuk volunteer]

Hi Kiwi Kohn,

We've already spoken, but a proper welcome this sunny morning from Dorset. UK.

We have a few other Kiwis on the forum, mainly from the North Island it seems. Also from Auckland if I remember correctly.

Looking forward to visiting your beautiful country again this Christmas to visit daughter and family. She lives on SI near Methven, grandson studying at Victoria Uni in Wellington.

I know you're trying to live with PMR without Pred and wish you well. Please keep us updated with progress, it's nice to hear how others are coping.

FYI it does appear that men cope better with PMR or GCA. Not sure why - maybe you're less complicated than us ladies!

[hiandri in reply to DorsetLady]

Thanks DL, my wife and I spent 8 weeks driving around the UK , May/June, last year and Dorset was magnificent, and weather unheard of!! Hope you enjoy your trip to NZ , if you come to Auckland let me know, could meet for a coffee! In regards to men coping better than women - probably because we have a woman to listen to all our concerns!!! (certainly applies to me)

[Patience47]

Glad to have another male on the forum as we seem to be few in numbers. Females are twice as likely to get PMR. THE ladies have a lot of valuable information which has been a great help.

[hiandri in reply to Patience47]

Thanks, I'm finding that out pretty quickly, its great to be able to share experiences and learn, every piece of info is a part of the whole jigsaw. John

[Megams]

~Welcome John and nice to see another Aucklander, especially a male on this wonderful website. This has been my mainstay and sanity prop since early 2015.

We don't have any support groups for PMR in Auckland unless one has since popped up without me noticing.

When finally diagnosed with PMR Jan 2015 I complained to the Arthritis Foundation (they are the main organization for any/all auto-immune issues) about the lack of PMR support other than a brief introduction to PMR page on their website. I felt the information they posted trivialized and minimalized this life changing condition. I have never been back to see if they have changed or updated information since 2015.

Understandably it boils down to lack of funding by the Arthritis Foundation which I fully appreciate.

I did post a message on our Neighbourly website to offer to link up with any other folk diagnosed and in treatment with PMR as a support buddy but did not get one reply.

I therefore continue my usual feasting upon valuable feedback and ever so helpful advice from these wonderful folk at PMRGCAuk.

[PMRpro Ambassador in reply to Megams]

Maybe because they don't really count it as arthritis? It is classed as a vasculitis.

[Doralouise77 in reply to PMRpro]

On the Canadian arthritis webpage PMR is listed under "types of arthritis" - strange....

[Megams in reply to PMRpro]

~I assume PMR comes under their umbrella being autoimmune in the broadest sense of the word. One would think that because it is classed as a vasculitis that it would have its very own entity or subgrouping within the Arthritis Foundations paradigm?

Again funding in NZ at Govt. level is very limited which I do understand so we are at the bottom of the pile though to speak.~

We have you lovely intelligent helpful angels across the other side of the world so who needs to ask for more?

[hiandri in reply to Megams]

Hi Megams,

First my apologies for not replying sooner, I missed the reply, not great at this blogging but learning quickly. Delighted to hear you live in Auckland , my wife and I have an apartment in Newmarket. I would love to meet you for a chat, my email is [e-mail], if you wish to do so. Had my first Pred dose today - amazing so far! Kind Regards John

[PMRpro Ambassador in reply to hiandri]

Not sure putting your contact details on a public forum is a good idea. You would be better using the private messaging bit as it would be far safer.

Click on your name at the top of the page and then go to messages. At the top right of that page in a green box you'll see Compose. There is a bx for who it is to go to and then you use the other post to write a post only the person/s you are sending it to can see. You can use it for a group chat - just keep adding the names you want to see it.

[hiandri in reply to PMRpro]

Thanks PMRpro, I didnt really want to but wasnt sure how to send a private message. John

[PMRpro Ambassador in reply to hiandri]

Oops - should also have said - you can edit it out if you want: click on the box with the downward pointing arrow and an edit option will appear.

[hiandri in reply to PMRpro]

Thanks PMRpro, I'll give it a go. John

[jinasc]

So were 25 patients in 2007, who got together in the UK in March 2008 and subsequently started up three charities, whose aims where, in this order, support, research and raising awareness. All volunteers, all patients and all paid their own way. Subsequently we have support groups, meet ups and all done by volunteers who are people with PMR and/or GCA.

Anyone can do it - and if you need to know how - contact any of the three charities, they will tell you how we did it.

5 met on Patient.co.uk and subsequently started this forum and a couple of others.

One is currently heavily involved in 'Roadshows' throughout the UK raising awareness etc - you can read about it by putting Roadshows in the search box.

I have supplied three links on your other posting.

Knowledge is power, but without those ordinary people and 'scientists' and dedicated medics, the progress since 2008 would not have been possible.

[Megams]

Absolutely appreciate and understand your sentiments sambucca for which I thank you.

When I posted on Neighbourly (a local community website covering part of the areas in which I live) I did not get one response as you obviously read. I was hoping for one or two buddies to begin with as I did not want to be overwhelmed with responses - no worry there!

I did find a NZ F/B page supposedly dedicated (in the loose sense of the word) which had years old posts from a few random folk through out NZ - remember we are a small country divided into 2 islands so compared to the UK we are a blip on the landscape.

My own enquiries through my Dr suggested that she only had one other patient other than me close to where I live. I know there are many more as my Rheumy from other side of Auckland has told me so, although in fairness, his patients can come from all over NZ as he specializes in a variety of specialty autoimmune diseases.

I suggested starting a small PMR group at my home from the clients of my Rheumy. He has a small private practice and have met several of his clients in the waiting room plus staff who supported me with my idea - privacy laws/red tape appeared the issue here so offered to leave my email with the receptionist and suggested she pass it on if she saw fit. Nothing has come of this and that's OK.

As my own PMR journey has unfolded I had/have developed other health complications and had various hospital stays. I was reminded that I must deal to my own needs before those of others - whilst at times I still find this foreign I am learning this aspect is vital to my recovery.

Never before have I felt so unreliable so with the passing of time I intend to revisit my desire to raise interest & awareness of PMR/GCA.

I am sure there will be other NZ folk who also have that itch that is in need of scratching from time to time too!

[hiandri]

Happy to help out Megams. John

[Megams]

~Hi there hiandri

Apologizes for this late reply but have finally sent you an email mail this evening - thank you for connecting with me.

Will have a great in-depth chat as soon as I can as life been busy with a tired hubby having his own health issues,

My kindest regards accompany this wee message~

[hiandri in reply to Megams]

Hi Megams,

Thanks for the contact, I have tried emailing you twice by replying to your email but both failed, don't know if it is slingshot will will get Geeks to look at it for me. Just wanted to let you know. John

[Megams]

~The weather during night absolutely atrocious John so that may have something to do with it - keep trying you will win ~

[Megams]

~Mean't to say John to reply to mine not attached to my old email and see if that works. [e-mail] and I will be back to remove my email ads off here once safely received email from you ~