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Nervous about tomorrow

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    Nervous about tomorrow

    Tomorrow we have a physio and OT visit. I must confess that I am quite apprehensive. As no one has any idea of how quickly MND will progress, I have no idea of how this will impact on our house, and how we will be able to cope here. But I am glad that they are coming, and hopefully this will be the first step in putting together a support system.

    We’ve had a good weekend, and my husband seems to be taking more care, so there have been no more falls. He’s still not talking about things, so I don’t know how tomorrow is going to pan out. My daughter is coming over as well, it’s for moral support, and also as she has a disabled child she knows a lot about problems with access and mobility.

    Do Try to get your hubby to accept things, Polly;

    Just tell him now, we can put them in the garage but if we don't take things now. we might have to buy things in the future.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      Good Luck. I too struggle with apts and coming to terms with it all


        Good luck for tomorrow Polly, Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.


          You are right Terry, but that’s not really the problem. I know I overthink things, but I’m thinking of bigger things like access upstairs, and what if we need a bathroom downstairs. It’s very hard when someone is still very positive to discuss what lies ahead. I’m going along with how my husband is dealing with things, but it doesn’t stop me thinking about it!

          Shrew, you are right. It’s very hard to come to terms with things. It’s quite unbelievable that all this has happened in such a short time,


            Thanks Lynne! X


              Hi Polly,

              Make sure you describe the worst days for your husband as it is our inclination to play down how this disease affects us. You get no points on the assessment scoring for saying we are coping.

              Best wishes,

              I’m going to do this even if it kills me!


                Hi Polly,

                The OT is a crucial person in your and your husband's support team. It's a good idea to try to have a good relationship with him/her as they are likely to have an important role in your husband's MND journey.

                If there is anything you don't understand or any questions you need to ask, the OT should be able help you.

                Try not to worry about the meeting. Keep a note of the names, telephone numbers and email addresses of the Physio and OT so that you can contact them if you need any help.

                Sending hugs to help relax you before the meeting.

                Trying to keep positive, but not always managing.


                  Hi Polly,

                  Can I add to that in that our occupational therapist has been very helpful, at least as far as pointing out that is quite difficult to convert our existing property and that we may need to move if I lose mobility.

                  She has been extraordinarily helpful in looking at alternatives and finding ways forward.

                  So unless you are very unlucky in the person who comes to see you you will have be a strong advocate in obtaining support for you.




                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

                  "Things turn out the best for people who make the best of the way things turn out"


                    I hope all goes well today Polly. Hopefully your husband's OT and physiotherapist are helpful, knowledgeable and friendly.

                    Love and best wishes to you and your family,
                    Kayleigh xx


                      Thanks for all your support. It went very well. They were friendly, helpful and gave a lot of good advice. They don’t feel that it is foot drop that led to his falls, but more likely were caused by a long-standing back problem. Most importantly from my point of view is that I have a local contact who I can get in touch with in case of any problems.


                        Glad it went well Polly - having that contact should give you a small bit of confidence.

                        Does your husband wear an AFO, ankle foot orthosis / brace to help his foot drop? Or maybe it came up during the visit and it's in hand.

                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                          Ellie, the physio got him to do various things with his feet, and as his movements were so strong, it is very unlikely to be foot drop. But the back problem is twisting his pelvis and affecting his walking. She doesn’t think a brace is needed. We are waiting for an orthopaedic appointment.