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  • Difficult Topics

    Posted by Amanda on April 12, 2021 at 10:16 pm

    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?

    Amanda replied 3 years, 1 month ago 4 Members · 5 Replies
  • 5 Replies
  • len-jax

    April 14, 2021 at 12:52 am

    I appreciate your, the sites, and pALS directness and insight! It is important to be realistic and plan for what is to come even though it varies for each of us. My wife and I sold our pre-pALS house as soon as I was diagnosed and moved into an ADA compliant house. We did not realize the scope of ALS at that time but knew it wasn’t going to get any better. I was a victim of incorrect thinking early on with ALS as I fell a lot using a cane before going to a walker. I did not make that same mistake when I needed a wheelchair. I think that is an issue for many pALS because ALS is so quirky in how it impairs and progresses in each individual. I know it has been for me – at times it moves so rapidly I am behind in my thinking and planning. That causes fear and uncertainty. I feel more in control and it is much easier to adapt when you are not in the middle of a new or worsening phase of the disease. I am now using a text to speech program that I began using before I actually needed it. It is now my main form of communication and I am thankful I learned the technology when I could still talk.

    I am very realistic in my prognosis – I know I will die from ALS but so will everyone else die of something. It is good that members speak of “The End” – it is a way to process the inevitable. Feelings are neither good nor bad, they just ARE. Sharing feelings is good and being honest about them hopefully will bring peace to some of us. I know at some point I will no longer have options to adapt what the disease is throwing at me. I will accept that when it happens but I refuse to let fear of that future event control me at this point. Most pALS probably get down or depressed at times. Each time I lose an ability or can no longer do something, I allow myself to feel sad – to grieve the loss. I accept the loss, then try to adapt the task or ability to do at least some part of it, then I move on. I find I have to revisit some losses many times before I move on but each time I grieve, the release I feel breaks me out of the funk I am in.

    I do have a dark sense of humor which gets me in trouble at times but it does bring me joy and lifts my spirits. I view my self as being depressingly optimistic! What I am going through is depressing but there is always hope for a way to adapt or to learn something about myself. I choose to live in the moment but those moments include planning for tomorrow.

    Thank you all for sharing your thoughts, fears and hopes in the forums – It has helped me a great deal – Each of you have purpose in that you have shared your journey with all of us.

  • Marianne Opilla

    April 15, 2021 at 4:41 pm

    I wish I lived in a Death with Dignity/Right to Die state, and have a lot of anxiety about ending my life on my terms instead of waiting to choke or stop breathing.  My MD assures me that hospice will take care of me, but I am not sure what that means.  I am thinking about consulting with a local hospice team, otherwise I will have to move to California where I can decide for myself when my time is up.

    That is my difficult topic.

    • Amanda

      April 16, 2021 at 7:43 am

      Marianne, that is a difficult topic but one I am sure many on our forums has considered. I’m not encouraging you or discouraging with this post. 🙂  (I have to be neutral)  I have read over many states Right to Die Legislation and some have time limits on how long a person must live in there states along with other requirements.  If you learn anything that you feel is important to share, please share on the forums.

  • Kathy stitz

    April 16, 2021 at 7:10 am

    Coping with death and end of life issues is always difficult to do.  When you are still relatively young like I am, I think it is even more difficult.   This condition causes a lot of mental and physical suffering and that is very depressing.   This is a journey that none of us has chosen but I am grateful that we are able to help and support each other.  Like Len said, thank you all for sharing and best wishes to all of you.

    • Amanda

      April 16, 2021 at 7:45 am

      Kathy you bring up some good points.  It is because of forum members like you and Len that all of us are able to learn from each other.

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