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What information would you have benefited from after your ALS diagnosis?
What are some things you wish you could have known after your diagnosis?
Would this information have helped you to better adjust to your symptoms, make changes to living arrangements, and participate in activities?
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2 Replies
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I feel fortunate that I was already knowledgeable and connected to the ALS community prior to my diagnosis. One of the things I appreciated the most was the multidisciplinary team approach at the ALS Clinic. Even though I had been aware of ALS, and had lost many family members to the disease, I was still surprised at the amount of information I was told and provided at my first clinic visits. I would definitely encourage pALS to bring someone with them to clinic appointments along with a notebook.
Amanda
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Rather than being sent home to “process” my diagnosis, and to return in one month … I wish I had been given more guidance as to “what to do right now.” Should I change my diet, exercise more/less, read a recommended book about ALS, … what should I be doing?” These were questions I had at the time of my diagnosis. Although I found the answers over the course of the following year, knowing all that early on would’ve saved me from a lot of worry time.
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