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When your mother, father, brother, sister, husband, wife or child (yes ALS can strike anyone at any age) is diagnosed with ALS, life changes not just for the pALS, but for everyone in the family(and inner circle).
Often caregivers are not sure where to start or where to turn for advice and information. It is important to educate yourself on ALS so that you know what to expect and how to help your pALS. It isalso important to not over do the research and understand that each case progresses at a different rate and symptoms can vary from person to person.
Some things to consider include looking into your health insurance and knowing what they will cover and what you may need to cover outside of insurance. Learn about different treatment options discuss with your pALS so that you both understand theses options. Contact your local ALS Association Chapter to find out how they can help. Some have programs to help with respite care, counselors for pALS and caregivers or even a program to loan much needed and expensive assistive technology. The ALS Association may also be able to connect you with other community resources to help fill other needs. Dedicate some time to researching what your/pALS needs will be in the future so that you can be prepared. Do you want to voice bank like Steve Gleason did? Consider joining a support group or reach out to others in online forums such as ALS News Today’s forum. For more ideas and tips check out this article https://strengthoflove.org/tips-for-als-caregivers/
There is a lot to consider when you are the caregiver of a pALS. You will have needs and your loved one will have needs. If you have advice or questions please share on the forum.
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Here’s a website I put together: https://sites.google.com/view/alsinfo with links to various resources I found useful. You might start with the “General Info” and “Coping” pages.
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Andy – – my compliments! You have created an excellent website with lots of helpful links and information!
Although not every pALS will follow your same path of symptom progression or need the same medical and/or home equipment and modifications – – you have provided a list of all that should be kept in mind.
PS: I noticed I’m not among your “favorite ALS News Today columnists” 🙂 …perhaps I’ll make the grade in the future 🙂
Thank you for sharing this!
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Andy’s site is a great resource. Really comprehensive. One site that is a daily go to for me is PatientsLikeMe. There are lots of pALS on there daily. People ask questions and get answers from fellow pALS. They express fears, daily struggles and successes. Lots of pALS evaluations of drugs and supplements. I’ve met so many people there who share their daily lives. I find it helpful to interface with other pALS.
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