DVD/ information for families on PMR

I recall reading that there is a DVD available for the families of those of us living with PMR . I have a vague recollection it may have been available on the PMR forum of the Patient .co. uk site but I can't find it. I'm not a member of that particular forum but thought I'd read on here that was where it was available so I had a look . Does anyone know if it's still available and where I can find it please? Or if it's useful and worth buying? I would like my family to have more of an insight into PMR without me having to go through it with them on an ongoing basis as there's always something new to experience on this journey and I don't want to turn into a PMR bore ! If I was able to say a general " It's just the PMR " from time to time, when necessary, in the knowledge that they have some sort of understanding it would be a huge bonus. I'm going very well really and managing to taper down the Prednisone dose gradually with only the odd minor flare up. I live alone and not close to family geographically so when I do have to drive to visit my children or attend birthdays etc I have to ensure I can plan well in advance and sometimes I know I would be better not attending at all on occasions to manage the fatigue as I also work full time. I feel very embarrassed about having to decline invitations and worry about sounding like a hypochondriac to my family so I thought a DVD might help. Or maybe I'm just over thinking all this and my anxiety levels are all out of kilter due to the PMR /Prednisone !

5 Replies

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  • Go to this site:

    pmr-gca-northeast.org.uk

    and look there. It is the site for the northeast of England PMR and GCA charity who produced the DVD for their members some years ago but is also sold to non-members. They have recently upgraded their members pack and produced a booklet "Living with PMR and GCA" which is also available to non-members at cost.

    Both the DVD and booklet provide a lot of excellent information. You could probably find all the info that is in the booklet from posts on the 3 forums or that website but not in one place of a size you could carry in your handbag and read in a hour and show to friends and family. A lot of people have already expressed praise of it.

  • There is an order form available by clicking on the following link:

    healthunlocked.com/pmrgcauk...

  • Thanks so much Celtic and PMRpro. I live in NZ but I will certainly be following up on this as I'm sure I'll be able to get them to post the resources out ( I'm happy to pay the cost) . Once again I'm so grateful for this site and all the information as there's no equivalent here and we immigrants of Northern European heritage need support and guidance in our time of need! You're such wonderful people !

  • Thanks PMRpro and Celtic for those replies.

    There is no problem with overseas orders, we have fulfilled orders from Canada and the USA. No problem at all.

  • Thanks sambucca.

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