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Muscular Dystrophy Campaign’s Yorkshire and Humber Regional Conference

Posted Feb 11 2011 1:26pm
I have just come back from the Muscular dystrophy campaign’s Yorkshire and Humber regional conference.

It was a good chance to catch up with a couple of friends who attend my Sheffield MDSG meetings (our local support group meetings for families with Myotonic dystrophy).  We heard speakers talking about topics such as specialist physiotherapy, hydrotherapy, fundraising and the importance of multi disciplinary care for people with neuromuscular conditions.  They let me give my blog a plug too.

I met our new Family Care Officer for Sheffield , Margaret Jackson, and have learnt something new from her already.  I need to get myself referred to a neurologist who specialises in neuromuscular conditions, then they will be able to organise more specialist care.  They are called Dr McDermott and Dr Gibson.  I am hoping they might be able to get me some help with or advice about my weak neck.  I have been referred to a physiotherapist already, but I don’t think that is the correct person for me to see, as they are unlikely to have any knowledge about Myotonic dystrophy.  I also learnt from Margaret that I am supposed to have my lung function checked.  I believe this will happen under the care of the consultants that she mentioned.
I will pass on this information to the rest of the people who attend my Myotonic Dystrophy Support Group meetings as I bet there are others who should be under their care and aren’t.  It is very strange that I have never heard the names of those consultants before, even though I have a neuromuscular condition.  It just shows you have to be pro-active to find out this sort of information and these sorts of conferences help patients to do that.
Margaret Jackson said she would come and talk to us at our support group meeting.  That will be beneficial to everyone who attends.  I have had benefit just from a few minutes of chatting with her, which really shows how much we needed a family care officer in Sheffield.
There was a really interesting talk about research by Dr Marita Pohlschmidt.  Supporters of the MD Campaign raise a lot of money to fund research.  Marita is going to suggest that I be interviewed for their magazine about my PGD experiences.  I think it is hard to find patients who are willing to talk about PGD, but I don’t mind doing it.  I think it is good for people to be able to read about the patient’s perspective rather than just the science.
IVF update
Day one of my cycle arrived today, which is a day later than expected.  I hope it doesn’t mess up my dates too much.  It either means my follicles  have one day less to grow, or egg collection will get delayed to give them more growing time.  We won’t know which will happen until nearer the time.
Over the weekend, I will go to London for my first appointment of this cycle.  I think injections will start on Sunday.  Steve is staying in Sheffield with Dexter, they are planning a boys’ day out.

HIV Hep B/C results
As I mentioned here we were worried about our test results arriving too late.  They did arrive just in time so Steve went to pick up the results from the hospital.  They didn’t waive the charge, so he had to pay £150.  To make it even more annoying they would only take cash, so he had to hunt for a cash machine.  At least we definitely have the results though. That was an expensive error that the GP surgery made, they will probably never know the consequences.
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