Sometimes I find it difficult to respond to some of the posts, especially when I don’t fall into the pALS category yet. I don’t want to be disrespectful or imply I know exactly what my pALS online friends are going through. I have empathy, and have taken care of several people with ALS, but that’s not the same as being a pALS. In my opinion it is important to be realistic about the future regardless of your circumstances. Perhaps I do this on a different level than a pALS. I’m single, live alone, in my 50s so when I went to buy a home I kept the likelihood of ALS in mind. I bought a smaller single story home that was handicapped accessible. It already has a walk in tub and there are no narrow hallways. I know some of my friends wonder why I would make these decisions when I don’t have ALS. I do have some symptoms and many abnormalities in my ALS testing along with a mutated SOD1 gene. I’ve been volunteering for a pre-fALS study for about a decade (pre familial ALS). The doctor in charge of the study is direct and empathetic. He has told me that it really isn’t a matter of “if” I will get ALS, but more about “when.” As I’ve mentioned before my family has a long list of pALS, including my father, grandfather, two aunts and a first cousin…..So when I speak to the doctor I’m realistic and so is he. I appreciate his directness. So, when I make decisions that impact my future, such as buying a home, I keep ALS in mind. I don’t want to go overboard, but I also don’t want to put my sister in a position to have to address the things I could have addressed. Its a balancing act for me…I want to live for today, but plan smart for my future whatever it brings.
When one of our community members speaks about “the end” or not wanting to suffer longer than necessary, or not wanting to be a burden on their family, I respect their thoughts and feelings. I don’t think it is wrong to be realistic. I think most people on the forum do a good job of posting information and thoughts without being overly negative. I would imagine that is not an easy taks! Does that sound odd? Do you understand what I mean?
It is understandable that many pALS are depressed, at least at different stages, but most of our members continue to point out and focus on what they can still do. For anyone with a terminal illness, who is rapidly declining, they have a lot of things to consider and address. I feel it is important for our community members to feel safe posting their thoughts and concerns, of course as long as it doesn’t go against the forum guidelines.
Are there specific topics that you feel are difficult to bring up on the forums? Are you comfortable with the discussions?
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