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No Right or Wrong Way

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    No Right or Wrong Way

    Andy wilson I have borrowed this posts title from Ellie as it is so true.
    I’ve posted under this section because I do not suffer from MND but I did care for my wife who got diagnosed just over 5 years ago.
    Firstly I congratulate you on getting on the forum. As you will already have seen there are a great and varied bunch of people using the forum and I’m sure you and your wife will find some comfort from chatting with people or just reading some of the stuff be it of a serious or frivolous nature.

    From a Carers view point I would encourage you to share the forum with your wife because the topics are varied and certainly gave me more of an insight as to what support and help is available through the NHS. I think the most valuable thing I learnt was that sometimes you have to push hard to get the right action.

    I remember vividly the early weeks / months after Ann’s diagnosis. Head swimming with what now, what should I be doing etc. Most of all I remember all the tears and Ann saying “ I just want to wake up from this nightmare “. Truly dark times BUT as others have said that does pass and some form of acceptance follows.

    we spent many many hours sitting in various waiting rooms to see numerous medical people. It started to take over our lives so we took the decision to use that time to do what Ann wanted for as long as possible. Our joint passion was travelling and in Ann’s case the searching out of places to stay. So that’s what we did for 3 years. Ann would research, negotiate and book the whole trip and I would look after logistics. Things like how to get all the stuff Ann needed into the car before setting off on many many drives through Spain. As time went on more equipment was needed but some we no longer needed and some we could hire out there. I tell you this so that hopefully whatever you are into it doesn’t necessarily have to stop because you have MND.

    this is where no right or wrong way comes into play. We decided what was right for Ann was not going to endless meetings but to get out and do the thing that made her the happiest. We told Ann’s medical team what we’re doing and that they needed to fit in with our travel plans which often meant we were away for months at a time. Yes we were lucky in that we were both retired and we could just about afford to do it but then Ann was brilliant and finding great villas at incredible prices.

    of course this might not be your way of dealing with your journey but whatever is your way I wish you both all the best.

    I think that this an inspiration. In the year after my husband was diagnosed we went on 3 long haul trips (Mauritius, New York and Kuala Lumpur) his medical team thought we were crazy and tried to deter us but we carried on as it was so important to both of us. We needed the distraction and made some lovely memories. Traveling in a country when in a wheelchair really shows peoples kindness. In New York people couldn't be more helpful, I would really recommend it.

    It can be really tough on the carer as its a lot of responsibility and it is difficult getting used to moving and handling in a new place with limited equipment. In our case it helped my mental state as much as his. I would recommend making the most of life when possible as as the disease progresses it becomes much more difficult.


      All this sounds wonderful but with this virus it's going to make travelling really difficult. A lot of places have closed their toilet facilities for starters. It's hard to keep up with different countries and different areas within those countries what's allowed and what isn't. No one wants to get to the airport/ferry and find they can't get home. 😐
      when i can think of something profound i will update this.