Home Forums Surfcoastwombat’s MSA Forum Is it necessary to live in a big city close to research hospitals and a specialist neurologist, in order to cope with all the medical problems that are likely to ensue?”

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  • #1210
    Rosie
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    Dear John

    My husband, Bob, was diagnosed with MSA-C two years ago. Reading your website has been so enlightening and the love you felt for Patricia shines through all your writing. I only hope that when it comes time for me to become Bob’s full-time carer that I will be as nurturing, loving and patient as you clearly were.

    I was wondering if I could ask you for some advice? We have recently returned from living in Europe and planned to build a house in the seaside town of Merimbula on the NSW/Victorian border. It is 6 hours drive from Melbourne and Sydney and 3 hours from Canberra. At our last Neurologist appointment, our Sydney specialist analysed the changes in Bob’s most recent MRI scan results which showed the cerabellum having shrunk a little more and the basal ganglia compromised. He told us that there has been mild to moderate progression since the first MRI which was done two years ago and that Bob is experiencing a very gentle progression. BUT he also said that he felt it would be very foolish for us to leave a large city with large hospitals and specialist neurologists.

    I was under the impression that as things got worse with MSA there was not much the neurologist could do. From our meetings with neurologists in the Netherlands and the UK, I understood that all that can be done is symptomatic treatment of the disease and that a good general hospital can cope with the problems that are likely to be encountered together with a team of physiotherapists, speech pathologists and urologists. We spoke to a GP recommended to us in Merimbula who confirmed that a good GP who understood the condition would help and that the local hospital would be used for breathing, choking and pneumonia problems and if they couldn’t handle the problem then the patient would be airlifted to either Sydney or Canberra. Another positive thing is that Merimbula has an airport with daily flights to each city three times a day.

    We have dreamt of building a house in Merimbula since before Bob was diagnosed and feel that the quality of life there would be stress free and relaxing. At the moment Bob is coping very well. He has balance problems but is still able to walk unaided and, except from the fall from his motorbike which heralded the diagnosis, he has not had any further falls. As yet he has no low blood pressure problems. He has to self-catheterize but manages this very well. Other characteristic symptoms are problems with fine motor skills, writing and slightly affected speech and he isn’t able to drive, ride his motorbike or play his guitar any more which is very sad.

    We are trying to decide whether to take the specialist’s advice or not. To give up on our dream feels like we are just waiting for Bob to get worse and worse and that the disease has won as we have given up on living our life. We have always taken risks in our lives having lived all over the world – we went to Zambia in 1972 when we were first married and then emigrated to Australia in 1977 and then lived in the US and Germany and the Netherlands (Bob was an IT Consultant, too). I actually grew up in Tadley (having moved from Cardiff when I was 5) which is only a few miles from Reading.

    I’ve taken a very long time to ask my question which is, “with your experience of the latter stages of MSA, do you think it is necessary to live in a big city close to research hospitals and a specialist neurologist, in order to cope with all the medical problems that are likely to ensue?”.

    Obviously, I am very aware that I cannot begin to imagine what this terrible disease is likely to do to Bob or how I will be able to cope so I will be very grateful for your thoughts on our plan to live so far from large cities and their facilities.
    Thank you for taking the time to read such a long email. I will look forward to your reply.

    Regards

    Rosemary Harle

    #1211
    Surfcoastwombat
    Guest

    Hello Rosie

    I was saddened to get your email and to hear of Bob’s likely diagnosis.

    To attempt to answer your questions properly would involve a very lengthy email – there are so many “what-ifs” and secondary questions and comments. If it suits you, I would be more than happy to phone you and try and answer your questions verbally – I think it would be much easier and more comprehensive. But remember – I am not a health professional.

    If you would like that, perhaps you could send me your phone number and suggest a suitable time or times to call, and also to consider whether or not you wish Bob to be involved in the discussion.

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