Hello,
I was diagnosed with MND in January this year (2019). it was devestating especially as i have suffered with a serious rheumatic condition in my spine for nearly 20 years. At the moment I can still drive and walk (albeit my balance is bad and I had my first fall yesterday and have hurt my right elbow). So I am just about maintaining my independence at the moment. One of the things that the MND clinic are recommending at the moment is getting my integral garage converted to a wet room /downstairs toilet etc. But it is taking ages to get the surveyors and builders arranged to assess my house. Even if it is possible to modify my house to be wheelchair friendly, and builders are arranged and it is completed before I am wheelchair bound, I have another major concern.
My big concern is that I am a single person without a partner. I have some family members close by but, due to severe health problems and other issues in their own homes, they will not be able to provide much practical help to me. So I feel very isolated and very concerned about how I will cope/manage whilst living alone. I know that the MND clinic tries to keep you in your own home for as long as possible and help to maintain your quality of life etc. But much information I have read about other sufferers often includes mentions of their partners. So I am wondering If there are fellow sufferers on the forum who are single and/or contributors that know a sufferer who is single and whether they can provide me with reassurance and/or advice about how to cope with MND as a single and largely very isolated person.
For example I might do whatever I can to get my home modified so that I can stay in it for as long as possible. But, realistically would i be able to and rather than making that potentially big financial decision, should i consider alternative like moving to assisted accomadation etc?
I was diagnosed with MND in January this year (2019). it was devestating especially as i have suffered with a serious rheumatic condition in my spine for nearly 20 years. At the moment I can still drive and walk (albeit my balance is bad and I had my first fall yesterday and have hurt my right elbow). So I am just about maintaining my independence at the moment. One of the things that the MND clinic are recommending at the moment is getting my integral garage converted to a wet room /downstairs toilet etc. But it is taking ages to get the surveyors and builders arranged to assess my house. Even if it is possible to modify my house to be wheelchair friendly, and builders are arranged and it is completed before I am wheelchair bound, I have another major concern.
My big concern is that I am a single person without a partner. I have some family members close by but, due to severe health problems and other issues in their own homes, they will not be able to provide much practical help to me. So I feel very isolated and very concerned about how I will cope/manage whilst living alone. I know that the MND clinic tries to keep you in your own home for as long as possible and help to maintain your quality of life etc. But much information I have read about other sufferers often includes mentions of their partners. So I am wondering If there are fellow sufferers on the forum who are single and/or contributors that know a sufferer who is single and whether they can provide me with reassurance and/or advice about how to cope with MND as a single and largely very isolated person.
For example I might do whatever I can to get my home modified so that I can stay in it for as long as possible. But, realistically would i be able to and rather than making that potentially big financial decision, should i consider alternative like moving to assisted accomadation etc?
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