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  • Advice for caregivers

    Posted by Ashley on July 22, 2020 at 1:54 am

    For those of you who have a family member with LEMS, what advice would you offer to the family member who will be caring for someone newly diagnosed with LEMS?

    What has been the most helpful thing for you?

    Ashley replied 3 years, 11 months ago 3 Members · 5 Replies
  • 5 Replies
  • Rafael Flores

    Member
    July 25, 2020 at 8:46 am

    Al principio de la enfermedad es muy difícil de entender y aceptar la condición para el paciente y la familia. Mi recomendación es buscar apoyo psicológico con profesionales. Les recomiendo un libro “Cuando a la gente buena le pasan cosas malas” de Harold S. Kushner. Al comienzo de la enfermedad siempre nos preguntamos Porque a mi?

  • Price Wooldridge

    Member
    July 25, 2020 at 5:23 pm

    Translating Rafael’s answer:

    At the beginning of the disease it is very difficult to understand and accept the condition for the patient and the family. My recommendation is to seek psychological support with professionals. I recommend a book “When good things happen to good people” by Harold S. Kushner. At the beginning of the disease we always ask ourselves Why me?

  • Price Wooldridge

    Member
    July 25, 2020 at 5:26 pm

    I completely agree.  Medical professionals see the strain and pressures chronically ill patients face.  If it is a burden, yes I think it is good to ask for help. Professional counseling is available.

  • Ashley

    Member
    July 27, 2020 at 3:31 pm

    Rafael, @rafaelflores

    I couldn’t agree with you more there. I went through a period for about a year where I was angry and learning to cope with my diagnosis. It was especially hard for me (and your son I can imagine) because I had just turned 26 and was supposed to be at the “prime” of my life and was completely healthy a year prior to my diagnosis. Thank you for the book recommendation! I have not read that one but will definitely add it to my list. I think you make an excellent point about seeking counseling and psychological support as well!

    What are some things you went through while your son was being diagnosed? Is there anything that helped you?

  • Ashley

    Member
    July 27, 2020 at 3:31 pm

    Price,

    Thank you for taking the time to translate for me! It’s very kind of you!

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