BBC Interview with Cluster Sufferer
BBC Interview with Cluster Sufferer
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The link below takes you to an interview with Karen Garrett speaking brilliantly about her CH. Really with listening to.
http://www.bbc.co.uk/programmes/p03lbw91
Something really struck me listening to the introduction....which included the sensory loss. I know the autonomic eye symptoms are listed in CH publicity, but those who don't live in Clusterworld won't necessarily know how severely that impacts vision.
The perception of CH would be given a massive boost by consistently attatching the information that the clinical symptoms have serious functional effects on vision during attacks, and it can take some time after an attack for normal vision to be regained.
I suspect that because, as we all know, the pain is by far the worst aspect of CH, the sensory problems tend not to come to the fore by comparison. I think bringing the fact that people loose their vision into the foreground might make people think that CH should perhaps be properly recognised as a valid and serious condition........because the uninitiated seem to get their heads round the concept of vision loss much more easily than they do with the concept of indescribable pain.
Harriet
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hi thats good how she comes across, you will find it at 1.25 on the clock of the video, for all those with a bit of funk in them try the song be for at 1.23, thanks for puting this up, heart breaking to be such a young suffer with this hidden condition, its always good to share a story i would like to hear more posative ones as there so rare, are there any cluster couples out there? this is gona be a good year, remenber life is good always it just not easy, one day one smile at a time, d
Darren what an inspiration you are always look on the bright side,
one day at a time.. How true
your gift to ouch via 3bs £500 was tremendous well done, you are a good friend to ouch.
Elma
hi yes theres always a bright side you just have to find it,,
ive bin so down so meny times rock bottom, ive left a cusion, book and an ashtray down there, once there the only way is up, some just need a little help and support to find the way, its a road i know well as most of us do, ch lost me my job, trade, but not my will or my life, somtimes you just got to say fiddlysticks to it and just live life, as a biker if im gong to be in pain at the end of the nite any way i may as well enjoy the ride, best shared with frends,,
the club was glad to raise money for ouch espesaly as thay didnt know i was cch 8years now but there again i only found out last jan, now i have a lable blue badge go figuer? yes ive had a few comments as i put it on my harley but dont use disabled parking spaces, the polite ones get an insight to ch, (sorry i cant tink of a polite way or othrer word for assholes) but them yes thay get my 6ft biker mad eyes, its for homosidel psycotik rage smile and say nice hands, works for me, some no explation is possable so have fun,,
its a shame we cant have an adult bit as ive got some ch funnys that are funny as,as er flip,, so thay go by emails,,
yes a good frend to ouch and its members, but a pain in the bum to deal with (ask harriet), ch just one more cherry on this fruit cake,, keep smileing d
Darren, you are funny - who but you would think of having a cushion, book and ashtray down at Rock Bottom. Haha.
Karen is a natural isn't she? She told me she was shaking like a leaf during the interview but you would never know she was that nervous.
Have a good day all.
Dorothy
Dorothy
OUCH (UK) Trustee
Hi Harriet ,
I must admit I was wondering if I was the only one who had this sight loss problem . As I can't see much out of my left eye when I get a right sighted attack I literally am blind . Although it's not great to hear you get it too it's nice in a way to hear the "me too" factor .
Agreed , this needs to be further investigated . Will speak to my neuro about it again for a start when I next see him
Hi Karen,
I'm not the sufferer in my house, it's my husband poor man. But he is effectively blind during attacks and always has been.
For a year I have been heavily involved in PIP for CCH sufferers, which has led to in depth conversations with around 20 chronic intractibles. Being able to read to is one of the 12 PIP activities, and to be lawfully scored as able to do this the person must be able to read whenever they need to. Every sufferer I have spoken to has severe visual disturbance and is functionally blind during attacks.
So that is what made me pick up on it when Graham Torrington introduced you and included the sensory loss. And I think this definitely wants highlighting as the CHers struggle to get perceived by the system and society in general as having a valid and serious problem.
You were awesome in your interview, you came across extremely well and it is such an important thing to do.
H.
hi dorothy, yes at least im comfy down there, never down long but will always find company there and the more the better to lift the spirits,
storys like karens mean so much to so meny we havent reached yet, it just high lites theres thousands chers out there with all the pain and no infomation or rite meds, i wouldent like to go back to no meds again for a month let alone years again, so any publicty that raises awaremess is always a bounous, theres another inspireing story on faceache, lisa from america, ive asked her if she would like to share it on the fourm for all, she would love to and has contacted chloe so watch this space,,
all the best d
Hi Harriet ,
As a chronic intractible that's very interesting to hear . Especially as my PIP forms plopped through the door on Thursday , changing over from DLA. I actually get the DLA for 2 other conditions but will be including my headache conditions this time . I also have chronic daily headache , migraine and SUNCT .
Thank you for that very helpful piece of info , very much appreciated .
I have to say Graham Torrington and his team were amazing . One of his researchers spent over an hour on the phone with me earlier in the day . They let me record it early , at a time I am usually pain free(ish) . Then Graham spent 1/2 hour talking to me after we had finished . Including making sure I had his email address to report back after my ONS op .
Karen
Hi Darren I believe Mike has just put this on youtube as it was being deleted from the BBC site in a week or so .
I'm so untechy it's untrue but going to go and look for it . Hopefully that way it might get out to more people ?
So glad it came over ok , I was a bag of nerves and have not really discussed this in any sort of public way before .
Karen
hi it came across fantastik, clear and factual honest, both myself and harriet would be glad to give you any pip advise, and thank you so much for haveing the courage to share your story,,
all the best d
Hi Darren
Yes, I saw Lisa's story about Vegas. It's great that she was treated like a VIP by the staff in the venues!
Karen, you're a CH celebrity now, haha!
Dorothy x
Dorothy
OUCH (UK) Trustee
hi dorothy, yes it a good story to be shared,
thats a cracking porfile picture of you,
all the best d
Karen,
Once you find it on you tube, would you mind putting the link on here so that everyone can always find it?
H.
I found it Harriet
Here it is
Thanks to Mike Thorpe !!
https://www.youtube.com/watch?v=xBSIX6HcD3M&nohtml5=False
Fantastic! Thank you.
Btw, how did the interview come about?
H.
Ooh, thank you Darren!
When Dave was taking the photo, I was yelling "back, back, yer too close!" Haha, what a hoot...:-D
Dorothy
OUCH (UK) Trustee
Hi Everyone I also did Tims radio interview this morning
https://www.youtube.com/watch?v=0gpsKjjZ8BY
Mike
Dr Lambru asked me to do some interviews for CH awareness day and his team helped set one up for BBC 5 live breakfast that morning.
It was heard by Graham's team and they rang me later the same day and asked me to do this one .
Darren I was looking for you on the FB group today trying to find the link you did for PIP .
Couldn't find you
Harriet has given me lots of PIP help today .
Thank you both !!
hi karen, tyipcal faceache stopped my account untill i used my real name darren hamilton, well its on faceache now and this sites more secure so no probs for me, glad harriet could help as shes spells so much better than me and uses better words, and of course taught me every thing i know pip wise, to which meny are greatfull, so between us we have covered both the fourm and faceache, this is why my advise is so up to date (trained by the best) ,
so the oil is topped up for a while yet, copperhead road playin, any one up for banter or felling down ill be chilling in the humor bit,
all the best d
Karen, I'm delighted you popped in here to Harriet's post to chat about the interview and ended up getting great advice!
Dorothy x
Dorothy
OUCH (UK) Trustee
Finally! Have listened to Tim's interview.
Well done Tim, you were brilliant. So good to hear CH presented in a way that means that no one listening would ever think it appropriate to suggest an aspirin. Very good luck with your implant when you get it.
Harriet.