Motor Neurone Disease (ALS)

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Anonymous wants to know if anyone is familiar with this disease:

“I am really really upset. One of my closest friend has recently been diagnosed with MND… Motor Neurone Disease (known as ALS). Reading about it on Google has given me goosebumps. I will highly appreciate if anyone of you knows someone with this disease and please let me know how can I help her.”

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5 thoughts on “Motor Neurone Disease (ALS)”

  1. I was a nurse case manager. The disease is different for every one. What is most helpful is to stick around. It is frightening to lose physical ability. As this happens people disappear from your life. Just showing care, telling them they matter to you, that you are praying for them. While they are able bring things they enjoy..a favorite candy, a book, music. Also outerwear that is easy to get on and off. Hopefully hospice is involved and they can provide training

  2. I am a hospice nurse so unfortunately I have first hand experience with caring for people with mnd/ Als. There are different types which progress at different speeds. If you are based in uk or Ireland I highly recommend getting in touch with local hospice/ palliative team and mnd society which can provide vital support and equipment. I’m sure other countries have similar services. We have had mnd patients come regularly for respite over the course of years.

  3. Truthfully, from what I know, it will be a difficult and emotional time for both of you. Give her your company and support. Be there!! She will need you. Find a group that will support you. You will need it. I do not, however know anything re stem cell treatment. Hope that is true. Sending hopeful thoughts your way.

  4. I am famliar only due to the name and how others have been with the disease. Regarding how you can help her…just keep being the friend you are. Stay close to her. Dont change. So many pull away. Illness scares people because they dont know what to say or how to act so many just simply dont go to see sick people but thats when theyre neexed most.

  5. My dear brother had this terrible disease and it was sad to see his condition deteriorate day by day.The disease is a progressive one and slowly his organs stopped working ,one after the other.Finally he choked to his death.Very sad and we just watched helplessly.I am told now in some cases stem cell Therapy works,but not sure.

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