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SueS's avatar

This is a brilliant topic. One which is so often avoided. The whole ‘you die with MS, not from it’ statement is more frequently the case than previously, but is not true for us all. People living with Advanced MS, and severely disabled often know they are likely to die of MS or want to ensure they have the means to avoid a horrific death. I am such a person, my reaction to most DMTs was adverse. This meant for the majority of my 25 years with MS I’ve been unprotected from relapses.

Today this means I am a full time wheelchair user. Today I can transfer with some difficulty. Tomorrow that may change. Today I can see, eat and speak, albeit at times with problems, tomorrow I may not. Today I mostly manage to self care, with significant assistance from my spouse. Tomorrow I may need more personal care. I have relatively mild cognitive deficits today, tomorrow these are likely to affect my life more. Today I have enjoyment from life, tomorrow I may not.

Eventually I may want to not live in this body. I have an Advanced Directive, copies of which are lodged with my GP and hospital. I have discussed my wishes with my family and friends. I am a member of Dignity in Dying and dearly wish to see assisted suicide become UK law.

I am so glad you have written this Selfie. It is needful. Many of us are living with early stage MS, and are on the most wonderful DMTs. I am glad that is possible and that death due to MS has become a relatively rare occurrence. For me it is probably a likely future.

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Rosie's avatar

Well said. Even before I was diagnosed with MS myself, we had a family member with it die from the disease and another have very few issues and live a long life so I always knew of it's potential to go both ways like many diseases and illnesses. After I was diagnosed, anyone in the MS world I spoke to was very insistent MS doesn't kill you. It's not that I was worried what path my own disease would take, I was quite calm in terms of knowing that access to amazing DMTs now (even if we have to fight for that right) made dying from the disease rare, but to me it seemed to deny the reality people with end-stage MS are living and leave them without the help they and their families deserve and should receive, such as preparing for what should happen if they became more ill.

I had many people say to me that my family member didn't die from MS, it was pneumonia but that's like saying another didn't die from cancer, it was the morphine used to manage their pain or the infection they caught. Talking about death and MS needs to become less of a taboo for sure. I don't know if I'm unusual in that I never panicked after my diagnosis, or that experience with family just made me realise it was like any other disease and could go both ways.

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