You are not alone: A special announcement made on behalf of jinasc about a very special DVD

[PMRpro]

‘You are NOT Alone” - A DVD made specifically for Patients, Family and Friends.

You come out of a consultation , probably no longer than 15 mins.

You have never heard of PMR and.or GCA, and are a bit bewildered and sometimes confused.

This DVD was made and the language is plain English, the Medical contributors, all of whom work in the NHS, did not use any jargon. They gave their time freely and without any charge.

History - written by John Robson who now runs the North East group under the auspices of the National

Charity.

It’s over 10 years since the creation of the original PMRGCAuk North East charity. This group closed down in November 2018 and the present NE Support Group is part of the National PMRGCAuk Charity.

At the time the original group produced an excellent DVD and booklet which we still use and give to new members. Although the DVD just over 10 years old the information is as much relevant today as it was then. Additionally, there is a North East feel to the footage and information. We have uploaded the DVD onto YouTube which can be accessed in three parts.

Part 1 - youtube.com/watch?v=B0Mrz30...(Not working as expected?)

Part 2 - youtube.com/watch?v=5_hcYXj...(Not working as expected?)

Part 3 - youtube.com/watch?v=NT5z557...(Not working as expected?)

Part 1 - introduction and PMR with information from Consultant Mike Plant (James Cook Hospital)

Part 2 - additional PMR information GCA

Part 3 - Information from a Pharmacist, healthy food, exercise, etc

The YouTube footage has information from members, consultants. chemists etc etc, and hopefully you will find it interesting, and may bring back a few memories for members that may have been with PMRGCA NE for some time. We will be able to direct new members to the links, remind ourselves how much more information has become available over the last decade and, if nothing else, we have now saved it on YouTube for posterity.

This uploading, at last, has been made possible by Grammy80. Without Grammy 80 this would not have happened at all. So I cannot explain how this much means to those of us who were involved and still continue to be involved and still working to find cause and cure and that Grammy80 would become a one-off whom I am so happy to know.

So thank you Grammy80 for making this possible.

Please Note on the photo the contact details no longer exist so for further information please contact

pmrgca.org.uk/ the website of PMR GCA UK

I invited myself to the launch of the DVD at the Centre for Life in Newcastle - what an apt place for such an event! - and met jinasc, aka Mavis Smith, then Chair of the PMRGCA/NE charity, there. My life hasn't been the same since. PMRpro

[MrsNails]

All work fine - l will add them to FAQ & remind Everyone to Check In Regularly….

[Grammy80 in reply to MrsNails]

Incredible job~!💖💖

[Frewen1]

Thank you for sharing this

[redruth123]

Thanks PMRpro, jinasc and Grammy80. Great to have all this thoughtful info on Youtube.

[Rache]

Thanks to all 💐

[Grammy80]

I'm only thankful that I could give a small portion back~! When I lost the sight of my left eye overnight in 2019, went to the hospital, and was diagnosed with GCA, it was a big WHAT IS THAT? I found knowledge to be scarce, information rare and support nonexistent.

I looked on YouTube and the only thing I found were videos by physicians telling other physicians how to diagnose it. Boy, was I lost and lonely.

But I wasn't alone for long...I found all of you and hope that many others can come here and have their fears quieted and learn that they are not alone either. I was terrified, but PMRGCAuk changed my life and is still holding me up. You also arm me with the knowledge to be able to ask the right questions.

YouTube it.....and they will come!! xo

Thanks to Jinasc, PMRpro and so many others who did the hard part of making this happen.

Nothing but 💖💖💖💖💖

[Hidden in reply to Grammy80]

Hi Marilyn, how are you feeling? I think you mentioned you were due for surgery, did it go ahead ? Currently back up to 7.5mg, 7mg doesn't seem to agree at the moment. What a bummer as was getting excited about having no probs. Worries me that GCA and PMR are same symptoms, so it's hard to know which one is which.

Take care and would love to hear from you by email

Kindest regards

Anne

[Grammy80 in reply to Hidden]

Don't feel defeated~! It is beyond our control, the body and the disease is the dictator. I didn't have surgery...thankfully~! Right now, I'm in the middle of a flare and taking 20 mg per day and no Actemra. I'm a welcome host for infection at the moment. If it were me, Anne, I'd be happy to take the 7.5 for life. If you can get to the place where you are stable...that is a blessing. I'm doing ok except I'm more tired, and with lymphedema, I can only sit at the computer for so long and then I have to elevate my legs. That gives me the chance to listen to a book...I'll write soon. Take good care. 💖

[Hidden in reply to Grammy80]

You're so right re steroids. I was just so happy I was doing so well. But I ask myself,what makes me any different to anyone else....a miracle to sail through this disease without some hiccups along the way. My brother in-law who lives in Spain also has

PMR and is stuck on 7.5 too.....again arms and shoulder discomfort.

You take care X

[jinasc]

Mine neither since meeting you - serendipity.

[Grammy80 in reply to jinasc]

Joyful serendipity~!💖

[Skinnyjonny]

Thank you for sharing the information regards to the 'You Are Not Alone" DVD's on YouTube. It took some effort to download them from original old format but I'm pleased they'll be on YouTube as a legacy to so many people who assisted in their development and completion 10 years ago. I'm pleased to be of a little help in the process.

[jinasc in reply to Skinnyjonny]

Too true and Jack deserves a medal from me. xx

[Grammy80 in reply to jinasc]

GIANT thank you~!💖

[Pixix]

Brilliant thanks to all concerned! S x

[Grammy80]

I'm sure glad you went to the launch of the DVD....because you have touched many lives since. Your probing questions and shared knowledge are life-changing for us.💖

[Highlandtiger]

I watched these last night and just wanted to add my thanks to everyone who made this happen now and also to those who made it happen when the dvd was originally made some years back. The new YouTube format means that it is quite easy to pass the recording on to family or friends who are struggling to understand what it feels like to have PMR/GCA as well as helping us patients. There is a good description of the symptoms we have and it also mentions how some people woke up suddenly unable to move, which will probably resonate with a lot of us.

Mine hit me half way through a morning at work on my first day back after surgery then my Mum's passing not to mention being held captive in Edinburgh by the Beast from the East and unable to walk or drive because of the surgery while trying to arrange a funeral with everything closed including all shops and the funeral directors because of the extreme weather. Having got through all that and the funeral itself I came back up North and I was fine when I went back into work. Indeed I felt a weight off my shoulders. By lunchtime I felt like I'd aged 20 years and could barely walk. To this day I'm not sure everyone at work actually believes what happened to me that day...

Anyway, thanks to all concerned in this project. It is brilliant.

[jinasc in reply to Highlandtiger]

Thank you Highlandtiger - hope you let the people you work with see it as well so they will 'believe'.

[PMRpro Ambassador in reply to Highlandtiger]

There is a paper about it called "I suddenly felt I'd aged"!!!

[Koalajane]

A big thank you to all who have made this possible

[Jackoh]

Wonderful- a big thank you to all involved xx

[Claremont2023]

Thank you so much. I will watch all of these this afternoon.