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What to do next?

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    What to do next?

    I have just been diagnosed with mnd just trying to get over the shock, just need some info on what to do next. Stop working or carry on any advice would be welcome.

    that's a awkward one. I'm not a professional, a carer for my husband, think it has to be your choice. Depends what your profession is and your abilities. If you pack up work you will be home just focusing on your problems, if that's the right word, and you might miss your colleagues. I wouldn't rush into anything. Perhaps discuss it with your employer and family. Take your time, take advice and I'm quite sure all the lovely people on her will make suggestions.

    I send love and hugs because it must be a terrible time for you.

    when i can think of something profound i will update this.


      Gumshied12 - sorry to hear of your recent diagnosis. I am only in my mid forties and had expected to work until I was 70. I love my job and earnt a good salary with exciting career progression. But I had been off work sick for 18 months and once I discovered why, I knew I wouldn't get better, so I can't go back.

      I had to tell my employer and it was really hard. I miss working and would have liked to have carried on if I could. But they were surprisingly supportive and although I don't get paid, I'm still employed by them and can pop in when I want to (pretty impossible, but a nice idea).

      So I think it very much depends on you, your job etc. Don't feel rushed into making decisions as the first few weeks/ months might feel overwhelming. Discuss with family and maybe your manager if they are supportive?

      Gentle hugs x
      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


        Hi It really depends on what you do. Maybe take time for the shock of your diagnosis to sink in. I will say that you can still claim pip and still work.

        Could your employer make alterations for you? Can you take paid sick leave whilst you come to terms with things?

        Can you ask your mnd nurse for the ds1500 form. It fast tracks the pip application. £156 a week certainly helps me.

        Diagnosed May 2021 bulbar onset als.


          Sorry to hear of your diagnosis but welcome. You will get a lot of help here. I have continued to work, although from home. It gives me a sense of ‘normality’ to my day and obviously an income. I would advise you to wait a little while before making a decision, you need time to adjust to the shock of your diagnosis. As Shelly advises, you should be fast tracked for Personal Independence Payment.
          Bulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.



            as others have said, it depends on your job, on your feelings.

            My mum was diagnosed with Alzheimer's at 56, the consultant said to her,

            "Do you want to spend your physical and mental energy on your work,
            Or on your family and friends and enjoying life."

            This obviously depends on how you feel, I wouldn't make any decisions at the moment about work.

            I would apply for PIP, which you can have and still work (non means tested). Do it via the DS1500 form (fast track) as doing it normally is soul destroying and time consuming. Also you automatically get higher rate.

            Many people can continue working part time with accomodations.

            Sorry you are now a member of this club.

            Great support and advice on here.

            Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


              Hi there, sorry to hear about your diagnosis 😔
              I continued to work for three years after my diagnosis and was able to make some adjustments to be able to continue to use the office and work at home. Your employer is obliged to make ‘reasonable adjustments’ to allow you to continue to work for as long as you feel able. There is also a government scheme to help you and your employer access some grant funding and equipment should you require it

              Good luck, James.
              Foxes Never Quit 💙


                Welcome. We have been there. We are here for you
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                  Gumshied12 Hi, first advice would be to take your time before making the decision. One step at a time.
                  Factors that might influence your decision include your age, family circumstances, whether any pension schemes you’ve contributed to offer an ill health early retirement option, your savings, lifestyle expectations, housing status etc.
                  Personal Independence Payment has been mentioned (if you’re under state retirement age), New Style Employment Support Allowance (means tested) is another option if you’re physically or mentally unable to work.
                  I’m sure the MNDA benefits helpline could help you by providing more information.
                  Sorry you’ve had to join us in the forum. Best wishes
                  Diagnosed October 2020 - See my blog at


                    Take your time to consider all options. I worked for over 5 years post diagnosis, part time and with adjustments. You will qualify for PIP whether you work or not. Due to increases in workload, decided had enough and qualified for ill health retirement, which also has been around 5 years, so 10 in total, but I still keep busy at home with other interests. You may be able to adapt your job/work from home?
                    All the best.


                      Gumshied12 welcome to the forum.
                      I worked for about 6 months post diagnosis....however my increasingly deteriorating voice became problematic. I'm currently on sick leave....heading for retirement.

                      Your the expert in your situation and as you see we are all very different.

                      Look forward to hearing from you.

                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​


                        Gumshied12 a warm welcome to the forum.
                        I first had symptoms in 2017 and continued working for 3 years with the support of my employer and Access to Work (see JamesW above) many changes where put in place as my strength and mobility declined.

                        Overwhelming fatigue was the reason I stopped working. I opted to take ill health retirement in May 2021 after being off sick for 12 months. I didn't get my diagnosis until August 2021.
                        Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.


                          Gumshied12 i am sorry to hear of your diagnosis. I worked for a year after being diagnosed. It all depends on your job whether you can continue to work but you may want to chat to your employer as they may have health insurance cover. I used to travel by train for work and the train company arranged for someone to meet me in the morning and evening to help me on the train, they were marvellous. Also my firm arranged for a taxi to pick me up from work to take me to the train station in the evening. Another thought is to think about applying for a blue badge and a universal key to use the disabled loos for when you are out. If you can work carry on, your body will tell you when to stop.


                            A warm welcome to the forum Gumshied12

                            Originally posted by Gumshied12 View Post
                            Stop working or carry on any advice would be welcome.
                            Listen to your gut - taking your age, job, type of MND you have and its (likely) rate of progression, finances and family situation into consideration, what will suit your circumstances?

                            Love Ellie xx
                            ​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


                              Depending on how fast your progression is, you should figure out what to do. If your progress is slow, and you have time to do things, how is your financial stability? Is work needed, or is it time to travel, see things you wanted to see all of your life, visit distant friends and family, or just spend time with your loved ones? If your progress is fast, think about what is to come, and study up on things that need to be done before you are not able. Maybe join a clinical trial even.

                              The one thing you do not want to do is become depressed. We do not have time for it. Depression tends to speed up progression and having a positive and cheerful outlook actually extends life (and even if it didn't, it sure makes it a lot easier to live with). Live for today with joy in your heart and share that with those who are around you. No matter how terrible this monster is, it is our choice to be the light on the hill or to hide under a basket.
                              Last edited by Johnny5; 15 April 2022, 02:03.