June 20, 2022 at 12:39 pm #22182AmandaKeymaster
When you first learn that you have ALS or MND, the diagnosis is overwhelming! It is way too easy to let fear and depression set in, understandably. Where oh where does a newly diagnosed pALS begin learning how to LIVE with ALS? Here are a few suggestions:
Take Time to Adjust! Being diagnosed with ALS is nothing less than shocking and scary!
Be Hopeful. Your attitude is everything and it affects your physical and mental health. So, try to focus on what you CAN do and what you Can control.
Think Beyond Physical Changes. Think about your relationships, and focus on positive things in your life.
Seek Early Treatment. And consider exploring experimental therapies. Sometimes taking action can help with a cure and your mental health.
Take Charge of Your Care. Discuss what you would like for the future early.
Prepare for the future and consider making your home accessible early.
Engage Family and Friends. Help them learn about ALS and share information that you are comfortable sharing.
Be heard and Listen! You can Join a Support Group. Write a blog or a book! Join a social networking group.
What other suggestions do you have for newly diagnosed pALS that will help them live happier and healthier?
Adapted from: https://www.alsclinic.pitt.edu
June 23, 2022 at 10:55 am #22207Rebecca D.Participant
Richard – thank you so much for sharing this info. I was diagnosed May 10th and am just coming out of my diagnosis fog and trying to figure out next steps. Your lists and resources will help tremendously.
July 28, 2022 at 2:12 pm #22413Jerry FabrizioParticipant
I take it one day at a time. Each day I wake up I think about how I will attack this disease this day. I do not think about next year or next week. What can I do today. I have bulbar C9 genetic ALS. So, I want to talk better. So I sing every morning. My arms and legs are having issues so I do yoga. I work as hard as I did when i was working. I have had this disease for a year now. Lets kick its butt!
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