• Posted by jen-cueva on February 25, 2022 at 1:00 pm


    Yesterday we had a forum moderator call. We had several moderators with different rare diseases. This is always such a fun time and I learn much. Because of our differences, we discussed independence. We found that we all define independence in many ways.

    For example, those in the SMA community use a wheelchair, need assistance getting dressed, and have full-time or part-time caregivers. Another person with MG lives alone and is struggling with losing some independence. But financially, she depends on her parents. @stephanie, I thought of you as she talked about her MG flares.

    For me, I think of needing a wheelchair for distance, or dependence on oxygen, or when I can’t drive or take myself places I want and need to go. While I’m grateful that I have a hubby to support me in many ways, I also crave that independence.

    We also talked about how our definition of independence changes as we become older. Have you noticed this, too?

    What are your thoughts on this topic? Has PH impacted how you define independence? How do you define independence?

    jen-cueva replied 2 years, 4 months ago 3 Members · 3 Replies
  • 3 Replies
  • Randolph Reynolds

    March 1, 2022 at 2:43 pm


    My independence is demonstrated in getting away from home as much as possible. I sort of chuckle that at restaurants or church I am noticed and remembered because of the oxygen tank I pull with me.

    My worst fear is not to be able to do that.  In the past week I have been out every day.  Sometimes a friend drives me other times I’m on my own.

    I have to stuff my envy of those who are not so hindered.  How I’d love to be able to be free of being on supplemental oxygen.  That would open up travel and by definition my full independence.

    Not much in a way of defining the word and I feel badly for those who cannot do even what I am able to do.  Getting older?  I refuse to believe I’ll be less independent.  Perhaps that sounds like wishful thinking but I’m pretty stubborn.

    • Colleen

      March 1, 2022 at 3:32 pm

      @ripple76 I think stubborn is a part of the definition of PHighter! I applaud you for going to church and restaurants because sometimes patients feel to self-conscious to do those things. My son struggled with it for a while but eventually he came to terms with how much it was helping him and as long as it was helping him he wasn’t going to sit idle.

      It’s hard not to worry about the future but try to stay focused on what you can do now and enjoy it – which it sounds like you are.

  • jen-cueva

    March 3, 2022 at 10:58 am

    Hey @ripple76, I have to laugh at @colleensteele’s comment about us PHighters being stubborn hehe. I will start blaming my stubbornness on PH. Usually, I blame my mom or late Pawpaw.

    Getting out and about helps us in many ways. Not only does it offer some independence, but it can also offer mental and emotional stability too.

    I know some days I can’t drive because of how my body is hurting and not fully functioning. But on days when I can, I try and remind myself how freeing this is, and many with P{H and other rare diseases never have this feeling from driving. So while this may not be every day, when I can drive, I enjoy it. I usually keep my window down a little, radio on, and sunroof open. Drives were what saved my sanity during COVID lockdowns. It was mostly Manny driving at first, but eventually, I started driving when I felt alright.

    We all tend to worry about the future, but that can quickly start to steal our joys of today. That’s my reminder to myself and others who need to hear it.

    Thanks for sharing your perspectives, Randy. You bring so much to the forums. Take care of yourself.

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