Morning,
Firstly I want to say how sorry I was to hear the news that Sir Chris Hoy has terminal cancer, how awful for the young man, secondly how sad for his wife being diagnosed with aggressive MS. I saw this on BBC breakfast news this morning, they had Kadeena Cox speaking about MS and in my opinion she didn’t do a great job, not for how I feel anyway and I’m sure I’m not on my own.
Jean x
Don’t be so judgy, Jean.
Firstly, MS got a mention on BBC News and secondly, everybody’s MS is different.
Well GCCK, I really didn’t expect any different from you, enough said.
Hi Jean
Yes I was very sad to hear the news about Chris Hoy and his wife.
I didn’t see BBC this morning so can’t comment on that.
Hope you are doing ok.
Pam x
Hi Pam, thank you for your reply, I Know everyone’s MS is different, so this is why sometimes I think it isn’t good for one person to comment on behalf of the MS community, we all have different stories to tell, some not as bad as other’s but nevertheless not nice, I know someone on here things I’m judgy, but honestly I’m not. Anyway in answer to your question, no things aren’t good here, as well as my bladder, now my bowel has joined in the fun, so on top of everything else I have to live with, thanks to this condition, things aren’t great, maybe that’s why the interview this morning hit the wrong spot.
Do hope you’re doing ok Pam, as I know things aren’t easy for you either, chin up and we’ll just carry on, take care.
Jean x
Hi Jean
I have never thought of you as judgemental, you are entitled to your opinion whatever anyone else thinks.
Yes we all have differing symptoms and I think we all make the best out of a horrible disease.
Sorry things are not so good for you at the moment, deep breaths chin up time again.
I’m doing sort of okish but could be better, fed up of the continual wet weather, but my sister who lives in Oz tells me their weather is the same !!
Take care
Pamx
Hi Pam,
Thank you for your kind and supportive words, I’m glad you are having a slightly better time and yes things could be better. The weather has been dreadful, not sure where you are in the country, I’m in West Yorkshire and it’s been wind and rain. My brother lives in Perth Australia and at times he’s had it too hot, so none of us can win.
Take good care of yourself and stay safe and as well as you can.
Jean x
I’m in Gloucestershire Jean along with all the Royals 
OMG, I thought you would be
Jean x
Hi Jean, your post prompted me to have a look at BBC Breakfast on iPlayer - the live broadcast is too early for me:face_holding_back_tears:
. Must admit I’m not too sure what the role of an Ambassador is but yeah, on balance she could have done a bit more to explain the challenges of living with MS and where we are in dealing with the condition especially how so many of us face a gradually deteriorating life. To be fair to her, it was probably a bit too early in the morning for her as well and, in particular, the Society should perhaps have briefed her better about key points to get over during the interview (might be just my perception but I thought she looked a little uncomfortable and out of her depth and experience in dealing with the live TV. Long time ago but when I worked we got training and practice sessions on such things ).
On an unrelated condition, namely Prostate Cancer, I find it so alarming to learn from the programme that the NHS seems so reluctant to update its guidelines. Prostate checks ought to be routine and regular from midlife !
Hi Hank Dogs, Thank you for your reply and I agree with what your saying, she did look uncomfortable, I felt she wasn’t sure what to say, or how to say it, I did actually feel sorry for her, not nice to have to be in that position. My hubby said they should have had a professional on for the MS, like they did for the prostate cancer, that lady was on the ball and knew what she was talking about, I also agree with what you had to say on that, sounds like the guidelines on that are from the dark ages.
You have the best day you can and thanks again.
Jean
Hi Jean, just thinking aloud but it occurred to me that like the woman from Prostate Cancer UK, the MS ambassador should have had one or two key points to get across. One potential point could have been the current massive variation in waiting times to get a quick diagnosis and to start on DMTs (lack of sufficient neurologists!) and shortage of MS Nurses.
Very good point Hank Dogs, that point and so much more. I’m SPMS, went straight in at this and DMT’s were no good for me, but there are so many newly diagnosed and other’s who could benefit from them. I have a young lady that comes to me every 5wks to do a back massage, she herself has MS, diagnosed 5yrs ago and never been offered any treatment, I think this is terrible, I know when I was diagnosed 18yrs ago now, the thought was that the sooner you got someone on DMT the better, is that still the case now, it would be good to get some of these points across + yes not enough MS nurses and neurologists, gosh it should have been one of us on the BBC news LOL.
Jean
Hi Jean,
For me personally, DMD treatment has always been theoretical, as there is no guarantee attached; it may or may not work, but it’s certainly worth having a try at least.
I think they turned to Kadeena Cox for her star power. Do you remember that skit, if I can call it that, a few years ago on the Beeb of Jack Osborne narrating his MS journey.
Regards,
JP
Morning JP, thank you for your reply, yes I do remember seeing it with Jack Osborne, just can’t remember what happened now, brain fog , LOL. I agree about the DMD’s, this lady that comes to me and has never been offered them, she now seems to be getting new symptoms slowly creeping up on her, she has the same MS nurse as me and doesn’t seem to be getting a lot of help, she never sees a neuro, which again is shocking, I feel one day the powers that be will turn to her and say “sorry DMD’s won’t help you now” she’s never been given the chance, crazy.
Have a good day and take good care.
Jean
Hello, @greenhouse thanks for your comment. Kadeena was invited on to talk about her own experiences of diagnosis and living with MS. She has relapsing MS and is on a treatment so was more trying to represent her own experiences. She did also try to get across that primary progressive MS is very challenging to live with. We know lots of people with PPMS don’t have any DMT options at all. We’re sorry you felt like she didn’t do a great job.
Thank you for your feedback.
Marian (admin)
Hi Marian admin,
Thank you for getting in touch, I know this is a difficult one to get across, as everyone’s experience is different, myself and my husband just thought it would have been better for a professional to have been ask to speak, like the lady from the Prostate cancer team. Kadeena did her best, sadly it didn’t represent all the MS community.
It’s nice to know that the admin team had a look at this post and who knows in future a professional may be used.
Kind regards
Jean