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Managing Depression

I want to understand how personal with SMA cope with mental depression when you lose the ability to do certain things which you were able to do previously?

for example, before the pandemic if I were to fall down accidentally while walking, I was able to prostrate and get up on my own from the floor. But after the pandemic, and being stuck indoors, I have lost my ability to get up from the floor, and I have also lost my capacity to get up from any toilet seat or chairs which are lower than 24 inches in height from the floor.

At home it is not an issue since I have modified my toilet with a add on toilet seat raiser and computer chair with a seat booster. I have issue whenever I go out, how do people cope with those situations?

Over the past two or three years I have also started forgetting a lot and I am not sure why and that leads to more depression as well.

Sometime I feel too worried as to where this might lead to in 5 or 10 years from now. The only thing I could say to myself is the sky is not falling on my head right now and move on. Are there anything else which I could do to improve my situation.

  1. Hi , hopefully other community members will eventually chime in with what they have found helpful. Tending to one's mental health is a vital component of overall health. We know how challenging it can be to manage. Your physician could be a great resource to reach out to about what you are feeling/experiencing. I included a few articles that I thought may be of interest on the topic here - and and I hope this is helpful. Please don't hesitate to reach out if we can provide a listening ear or help locate any other information. Kindly, Jessica, Team Member

    1. Hi just wanted to check in and see how you are doing? Also, please feel free to post your question on our Facebook community - It may increase your chances to get some response from others. Again, we are here. -Jessica, Team Member

      1. Hi , just wanted to check in on you and see how you are doing this week? Sending many positive vibes and hugs. -Jessica, Team Member

      2. I am better thanks for checking.

    2. Hello, I can honestly say I have had really hard season on grieving the abilities and life I had years ago. One thing I found helpful was to understand it was ok to grieve these things. It may seem silly but it isn’t. These were important things to you and to not have them is a loss. I lost the ability to do my make up on my own and to feed myself on my own after my two pregnancies. It saddens me but I try to focus on the things I am still able to do. Also connecting with others and sharingy struggles with people with SMA hav been very helpful because they understand and then you don’t feel so alone. They also help come up with creative ideas for accommodating when out on public.

      1. I would love to hear some of the creative ideas that you have mentioned in your post.

    3. I too suffer with depression, I finally learned that it's okay to not be okay. I once had very strong upper body strength and now, at 50, I'm basically a quadriplegic. I used to paint and sketch, both of which are impossible.

      1. I started crying yesterday after hubby left for work. Since I had covid and gotten "better", if you don’t can call it that. Covid has taken away my memory. Everyone laughs it off but I find it embarrassing when I just can't find the words and I'm usually so articulate. I just don't feel like myself and nobody gets that. Thank goodness I see my counselor on Monday.

      2. my heart goes out to you. <3 Sorry to hear you have been having such a difficult time. How are has today been for you? I hope your appointment on Monday helped you feel a little better. Sending many comforting hugs. -Jessica, Team Member

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