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  • My parent has LEMS: How do I best support him/her?

    Posted by dawn-debois on December 15, 2019 at 10:00 am

    When a parent is diagnosed with an ultra-rare disease like LEMS, life changes on a dime. People know how to support their parents with “known” illnesses; but what does one do when it’s a rare disease like LEMS?

    I’ve met some amazingly dedicated daughters of LEMS patients in the last couple of years. Their dedication to supporting their parents has been amazing to witness.  Let this be a discussion for how to best support our Rare Parents.

    rafael-flores replied 4 years, 1 month ago 3 Members · 3 Replies
  • 3 Replies
  • zoey

    March 12, 2020 at 8:03 am

    We need to say it – it is hard on the children. I have seen them too – amazing children who help care for their parent. Parent who have LEMS, need:

    • empathy
    • help with organizing their changed lives
    • kids to go along for doctor’s appointments
    • help to come to terms with the illness
    • information to stay up to date with new research

    …..oh the list can be long.

    Although households are not all multi-generational like they used to be, they occasionally become this when kids accommodate them. Needs can vary, but any and all help is always welcome.


  • dawn-debois

    March 12, 2020 at 12:33 pm

    @zoey it has been my absolute privilege to witness you and your sister looking after your mother. Your compassion, humor and support absolutely make her challenges easier to bear.  Thank you for sharing your insight here.

  • rafael-flores

    March 13, 2020 at 2:16 pm

    Hola a todos.

    En mi caso fue al contrario. Mi hijo comenzó a padecer esta condición a los 13 años. hoy  tiene 19 años. Al principio fue muy difícil ver como día a día se deterioraba su condición física sin tener un diagnostico definitivo que llego 2 años mas tarde. Mi recomendación para los familiares , sobre todo para las personas mas cercanas al paciente y los cuidadores es que debemos tener mucha paciencia y fortaleza emocional y espiritual para acompañarlos en todo el proceso de la enfermedad. Es una enfermedad difícil de entender, sobre todo al inicio de la misma. No niego que han sido años duros lidiando con un adolescente que no ha podido vivir a plenitud estos años tan importante de su vida. Al principio me preguntaba Porque a el?y luego con el tiempo te das cuenta que hay cosas en la vida que suceden y listo. Les recomiendo un libro excelente que me ayudo al principio que tiene como titulo: “Cuando las cosas malas le suceden a la gente buena”. saludos

    Google translate:

    Hi everyone.
    In my case it was the opposite. My son started suffering from this condition at the age of 13. today he is 19 years old. At the beginning it was very difficult to see how his physical condition deteriorated day after day without having a definitive diagnosis that came 2 years later. My recommendation for family members, especially for those closest to the patient and caregivers is that we must have a lot of patience and emotional and spiritual strength to accompany them throughout the disease process. It is a difficult disease to understand, especially at the beginning of it. I do not deny that they have been hard years dealing with a teenager who has not been able to live fully these important years of his life. At first I wondered why him? And then over time you realize that there are things in life that happen and that's it. I recommend an excellent book that helped me at the beginning with the title: "When bad things happen to good people." Cheers

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