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Mental Health and continued care
Mental health continues to be a high priority in our society, especially during the pandemic. What advice would you give to doctors and other medical professionals when diagnosing ALS or other similar diseases? Other than telling a patient they have ALS, what information should they share and what should the plan of care consist of in your opinion following diagnoses? (Counseling, referrals to what?, contacts with which local agencies, support group information, etc).
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2 Replies
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Be sure to give them reading resources! The more one knows the less frightening it is. I had to find my own resources, and by accident, stumbled across the ALS book series available free from the ALSA. My ex-neurologist didn’t, or wouldn’t, answer my initial question”what can i expect?”, as well as other basic questions i had. Instead he told us to rent and watch the Steve Gleason movie, which was horrifying, I am fortunate in having the support of my very small, rural community and they’ve organized themselves into my Care Team, mostly doing tube feedings, which gives my husband a 1 hour break twice a day. And don’t forget Caregivers – they need support, too.
ALSO GET THEM LINED OUT WITH LOCAL RESOURCES – medical, physical, emotional and social.
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I agree with Christie that doctors and ALS clinic staff should provide reading resources and also information verbally. They don’t provide information unless you specifically ask about something. When you are first diagnosed, you don’t know anything about ALS so you don’t know what questions to ask or what information you need to know. I have read a lot about ALS on my own since being diagnosed so that is the only reason why I know information about it. They should help patients get a therapist and psychiatrist if they don’t already have one, if the pALS wants to see these mental health professionals. They should provide support group information and also financial assistance for pALS. They should contact the patients between appointments to see if they have any questions or concerns or if there is anything they need, especially since there is often 3 months or more between appointments. Also the support for caregivers is very important. They are suffering a lot too and need support and advice for what they are going through.
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