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What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something you’ve learned along the way that can make life with ALS easier or just something that helps motivate you every day.
Share it with us for an opportunity to be included in a collection of quotes, tips, and advice that will be featured on the ALS News Today website to help our ALS community.
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Do as much as you can as long as you can. If you like to travel, do it until it is no longer possible or enjoyable. If you like music, attend as many concerts as you like. Don’t worry about the little things. Keep your connections open with your friends and family – life is too short for those disagreements or arguments that are really meaningless. Your friends and your family are your lifeline.
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I would strongly advise finding a palliative care doctor in addition to going to an ALS clinic. We found one for my husband through a recommendation fron our ALS clinic. She has been fantastic and she is local, where the clinic is an hour away. She has made a big difference. Don’t wait to find one.
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Don’t exercise strenuously, archive your voice while it still sounds somewhat normal or use a recorded presentation / conversation for the dataset as I did, be efficient in your movements – think ahead before moving so there is no wasted efforts, get creative using your fingers for tasks – use them in nonconventional ways along with tools.
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Keep doing the things you love for as long as it’s safe. Keep your family and friends up to date on your journey. Reach out to other’s with ALS for support and advice. Our local Society hosts two zoom calls each month and I’ve learned so much and have made good friends through them too.
Have your home evaluated by an occupational therapist to find out what you’ll need as the disease progresses and get the equipment and changes in place before it becomes an emergency situation. Falls can progress the symptoms, so do whatever you need to do to prevent them. Be kind to yourself. -
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My tip: When at ALS Clinic appointments always listen, bring along an open mind and a positive attitude. Don’t be afraid to ask lots of questions such as, “What do you suggest I do to maintain where I am right now?” and write down everything so you can follow up at home.
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An ALS clinic visit tip I do: I visit every 6 months & I have a list of the teams email, I write a group email to the whole team. I tell them what has been happening since my last visit with me, my family & then I write to each department:
- PT – My wheelchair is working well, the Roho cushion is good, no skin issues. My L elbow support is loose, can you look at it please?
- RT – The Trilogy is working well, I’m wearing it for 10h each night. The rep has taken info off of it & sent it to you, what did it show you?
- ST – My HeadMouse is working well still, I can’t believe I’ve used it for 2 years! Dasher is still my way to write. My speech is getting harder to understand, can I discuss what to do next?
- OT –
- SW –
- DT –
I start writing it about 2 weeks before my appt., then send 1 email to all the team members & then go to my appt. When I see each one, I’m not talking very much & the Q’s I asked, PT to tighten the elbow & ST, the team are ready to fix or show me results. It saves me from repeating myself 10+ times during my appt. & my neuro & the team appreciate it because everyone knows what’s going on with me at the same time!
I have a great team at The Hospital for Special Care in New Britain, CT, I’ve been there since 1995 and have been doing this email for about 10 years. It works for me, it may save you some energy too! 🙂
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Hello Forum Members – – – these are all great tips! But I’m sure you all have more to share. Let’s fill this discussion topic with all your advice for other pALS and cALS. Here’s a recap of the request:
What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something you’ve learned along the way that can make life with ALS easier or just something that helps motivate you every day. Share it with us for an opportunity to be included in a collection of quotes, tips, and advice that will be featured on our website to help our ALS community.
Thank you all!
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Don’t wait to get a piece of equipment until you need it because the approval and acquisition process always, always takes longer than expected. And be diligent about checking on its status. Almost every piece of equipment, from wheelchair to Tobii device to seat cushions, has gotten hung up in the process and would have remained stalled if I had not followed up.
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