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Best Advice or Information
When your loved one was diagnosed you both were likely overwhelmed. Did anyone from the medical team connect you with resources? What was the best information or advice you received? Who reached out to you?
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7 Replies
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The best and most informative advises came from two sources. The first was the local chapter of the ALS Foundation and the second was someone who’s spouse past away from ALS a couple of years back.
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We were given basic contact information for ALS association at the first clinic visit. No information was given by the neurologist other than the life expectancy was 2 to 5 years. I think I still feel angry that so little support was offered.
The best advice I received was from my brother who was diagnosed with Non Hodgkins lymphoma in 2003 and is still going strong. He said he looks in the mirror each day and says I may die from lymphoma but not today. So far I have been able to look in the mirror each day and say” my pals may die of ALS but not today. I am sure as this progresses, I may not be able to say that with certainty every day, but for now it helps me keep a positive outlook. -
The best advice (support) we received was from our local ALS assoc. chapter. They called my husband within a day of his diagnosis and offered to answer any questions we had. We didn’t know where to start but they quickly helped fill in some of the dark spots. They continue to be the first source we seek out when new questions arise because they’ve seen so many different, individual ways pALS handle their challenges. They can usually provide more than one perspective on how to approach a need.
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@Lazar, did they provide you with information or advice that you would care to share with our members?
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@Dee,
My family also found a great deal of support from the Missouri Chapter. My cousin has been volunteering there for years. I wasn’t sure if things were expediated because of our connection or if they were that quick to respond to all pALS and families. From what I’ve learned since, that is how they respond to all pALS. It is a wonderful organization!
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My daughter gets very little help and has been asking for a social worker to visit for months with no results. She does get great equipment for the ALS foundation which has been a great help.I feel we have to spend almost all day on the computer doing our own research because nothing seems to be easy to access. One example is the Right to Try act. There is nothing to be found about that. I want to Know why the Neuron program is not being talked about more and why it isn’t in the Right to Try. I feel she will die before we get the info.Basically, we, as family, feel she was diagnosed, told Right to try is there but where and how?
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Jane,
Did you local ALS Association Chapter have any information about the Right to Try Act? This is a topic/question you might want to consider posting in the General Information and Diagnoses section. There may be some pALS and others who are more likely to check that section routinely.
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