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    We need advice

    Hi, my wonderful son-in-law is going through all the final tests for MND. The consultant is pretty certain he has it. He’s only in his 40s and our wonderful daughter, his wife, already suffers badly with Fibromyalgia. His legs barely move and the deterioration in the last 6 months has been rapid.
    This maybe an extremely naive question, but is there any help out there for adapted bungalows/ ground floor flats for them to rent? At the moment, they live in a little house with stairs, and we’re terrified he’s going to fall down them. I’m disabled myself and my husband and I live in a small bungalow. If necessary they’ll have to put their house contents in store and move in with us. This would not be ideal for any of us, but we’re at a loss as to who to go to to ask for help, and wondered if anyone else has been in this situation?

    #2
    If your social services aren't urgently making plans, get your MP involved.
    Copyright Graham

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      #3
      If your s.i.l. has a definitive diagnosis then ask the consultant for a DS1500 form as this may speed up the process.
      I’m going to do this even if it kills me!

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        #4
        Good morning I to have MND and used to be a hospital social worker.It might be worth your daughter contacting her local council and ask for The housing needs department and explain your situation (Always get the name o the person who will deal with it)Of course if your Son in law gets diagnosis that will demonstrate his need for housing.The DS1500 form from the GP is usually if your s.i.l gets a diagnosis.The DS1500 in my case also entitled me to the highest rate of the Personal independent benefit(PIP) if he isnt already in receipt of with social housing you ahve to demonstrate who their current home is no longer it.
        Also you have to demonstrate wh your current accommodation isnt suitable ie Stairs,I managed to get a stair lift installed and it may be worth asking his GO to refer him to the community occupational therapist if they could remain at home with adaptations??Best Wishes MaryX

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          #5
          Mary C gave good advice. The local authority housing usually have an OT who deals with their requests for disabled housing. They give whatever comes up to whose needs fit those homes most. Your son-in-law will need his diagnosis and a DS1500 ASAP to get both appropriate housing and to claim PIP. Good luck to him, Lynne
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
          I'm staying positive and taking each day as it comes.

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            #6
            Hi Spitchwick and welcome to the forum. Don't worry about 'naive' questions. There's a lot of good information on the MND Association website here;

            https://www.mndassociation.org/suppo...vices-for-mnd/

            Hope you get some help soon. Gary
            Each day is made easier with a bit of humour.

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              #7
              My husband is also in the diagnosis stage but we had a visit yesterday from the MND nurse specialist which was so informative and she is setting us in contact with the relevant departments for support! Thankfully we live in a bungalow but she is still making contact with OT as some adjustments may be necessary! Not sure which area you are from but with MNDA or MND Scotland website will be able to support and ask the consultant for contact with the nurse!

              This is such an awful time and just want life to be as comfortable as possible! Thinking for you daughter and son in law and hope they can get the support needed

              My father also has fibromyalgia so the pressure on your daughter will be difficult so the additional support will be vital.

              take care

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                #8
                I am currently viewing houses to rent privately with the view of husband eventually living/sleeping down stairs. We have expanded our search to the Whole of the North of England (Cumbria/Northumberland), Gave up on Wales as rented accomodation going to the first person that views and even as it appears online it is let agreed. The important thing as a base I feel is to live in the best accomodation possible ie downstairs bathroom/ living room big enough to sleep in. Prepared to use PIP for this, also discrimination against people on benefits. Parent prepared to help financially ir with white goods

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                  #9
                  Sorry not a great help. OT and social work just focused on the fact we are leaving the area, so can't get riser chair yet. Cheshire is the land of stairs everywhere, limited accessable accomodation. In Scotland, lots of stairs into the actual accomodation. Even flats, there are stairs into various floors. There is no central website for accessable places to live. Good luck

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                    #10
                    I really sympathise, I have been looking for accessible accommodation, and have found it so terribly stressful, couldn't have done it withour the help of my son. I have hopefully found somewhere now (though it still needs adaptation), when I was told I had got it I really cried I was so relieved!! (and worried this is what they call emotional lability, crying at a happy thing!). All the best x
                    Diagnosed July 2020, ALS bulbar onset.

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