Hi! (Partner of someone affected by MD)

Hello and welcome. Your thoughts are most welcome and very interesting. I am one of those who is a proponent of planning ahead. Why? Because I have had to do, knowing my condition is one that progressive, although obviously at an unknown rate. I had to plan for changes in my transport, I have had to plan for saving the money to buy a replacement stairlift. These are the sort of things that I was meaning. Along with those you have to consider what happens if things get worse, they may not of course, but they may also do. If the person with MD does not want to consider that sort of thought pattern then life will still need to go on. As I said not change may happen, and may well not happen for a long time. You can still go on and enjoy life like many. You have not indicated if your partner is at the point where their MD is affecting their mobility. I was lucky I knew nothing about mine for around forty years, I did get on and enjoy life. For example what will happen if they are at home all day? Do they have any other interests, things that keep the mind and body as active as possible? Watching TV all day does not work, I have tried it.But I also take on board your thoughts. I would be surprised if many on here with MD have not have their confidence harmed at some time, especially, like me, if they have lost their job(s) as a consequence. I have also been hurt by passing it on to one of my sons. I can understand your feeling of loneliness when everyone you meet be it family, medical, para medical or others who are supposed to help but have no understanding of your partner’s condition, nor indeed the position you are in trying to support them. I am around thirty years in trying to deal with my diagnosis and my son’s which occurred at the same time, yet I never seem to be amazed and saddened how little understanding and care from the professional have. Only yesterday a pharmacist at my surgery stopped my vitamin B12 as I could buy it over the counter. They did not even know that a B12 deficiency is part of one of my conditions.
Your penultimate paragraph very well sums up how you two need to deal with life “live as joyfully as we can, and to trust ourselves to keep finding a way forward together.” . What a wonderful and all encompassing view to have. But like all partners you will need to shield them, mine does both mentally and physically. She has also offered unsolicited advice, which in one case saved my life. As a partner you will have many responsibilities with regard to MD, do not question whether you are helping or hindering, where else will your partner get advice as they need it? Medical advice is essential from the right quarter, and you can and will be helped there when your partner needs it. I believe my partner does the same as you, and if thats the case I am very happy with the way things are.Please also remember that life, for all of us, is unknowable, and we just have to deal with the difficulties that affect us, a partnership helps there tremendously. But being a partnership also means that your partner will feel valued and useful.
I am sorry if this sounds trite, it is no meant to be. Please remember there is lots of support out there, like this forum for example so in that sense you are not alone, those who read the forum or the moderators are alway happy to offer support, and advice, if you want it. My own journey has been hard, and at times expensive, but it has also been interesting. You may find the same as you aim to become and expert on your partner’s type of MD.

Mike