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  • pALS Roundtable: What to say to friends and family about your ALS

    Posted by Dagmar on November 4, 2019 at 11:41 am

    Announce to the world that you have ALS, and most folks are completely baffled about what is expected of them. At the time I told my friends I didn’t even have a clue how to answer their questions of, “What can I do to help you?”

    So, during those first few months I remember I received cards, flowers and, yes, even offers of soup! I’ve since learned what to tell folks – – for example:

    • Try to keep our relationship as normal as possible. Pull me out of dwelling on my illness by sharing funny stories or discussing our common interests and current events.
    • I may walk a little slower now, have speech issues, and not eat the same foods as before, but don’t let that prevent me from attending special events and enjoying the company of others.
    • And, finally, keep my caregiver (spouse) in mind. If my care is intensifying, offer to run errands, mail a package or pick up a take-out meal. Or maybe give the gift of time by offering to visit with me so he or she can get out and have some “me time” as well.

    Click here to read more of my list.

    Did your friends have misconceptions about how to help someone with ALS? How did you approach the topic and what did you ask of them? What do you wish they would do?

    Dagmar replied 4 years, 5 months ago 3 Members · 3 Replies
  • 3 Replies
  • Diana Belland

    November 5, 2019 at 11:29 am

    Reading your post, Dagmar, made me realize how fortunate I have been to have a group of friends who have surrounded me with love and attention since my diagnosis eight months ago.   They continue to treat me like a “normal’ person by inviting me out regularly for lunch, calling and emailing, and one friend meets me every couple of weeks in nearby parks where I walk with her for very short distances, using my rollator.

    I’ve learned that it’s really important to make and keep dates with friends.  Sometimes, I don’t feel up to going out a few hours before an engagement, but I always “show up,” anyway, and I always feel better physically, emotionally and mentally afterwards.     Prior to my ALS diagnosis, I was part of a group of about 12 women who meet once a month for lunch.  My group of about 4 or 5 close friends were very understanding when I indicated to them that I felt more comfortable now in small groups rather than in the large group.   They were completely understanding when I said that I felt that being in the large group would be energy draining for me.

    Basically, I feel comfortable in telling my friends which restaurants are most accessible for me, which times of day are best to meet and what kinds of activities are feasible for me.   They have been a great support system for me by just carrying on with our friendship and not treating me like an invalid.

  • John Russell

    November 12, 2019 at 7:23 am

    As I have noted, for my wife and I friends have been more important than anything including the medical community. My wife has late stage Parkinson’s and has never been afraid to let people know what is going on with the disease. I soon noticed who were her friends and who were aquaintences. Surprisingly, some people you have known “forever” turn out to be aquaintences and some people you got to know recently turn out to be friends. The aquaintences soon drift away when you no longer contribute to their fun. The friends understand and acknowledge your fight, then continue the relationship making any necessary adjustments to include you in their lives.

    When I was diagnosed with ALS more than 5 yrs ago I followed Judy’s lead and told everyone what was wrong and what could happen. In almost no time, aquaintences disappeared and friends let you know they were there for you. These people are the ones who give me quality of life in spite of my predicament. These people are why we are still in frozen upstate NY and not in Colorado with our daughter or in Florida with the snow birds. (We have escaped to Florida briefly each yr thanks to the extra effort of friends who made the necessary accommodations to have us along).


  • Dagmar

    November 12, 2019 at 11:32 am

    John — you have good observations of human nature and wise advice for the newly diagnosed. Thank you!

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