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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 2 replies, 2 voices, and was last updated 3 weeks, 6 days ago by Kevin Schaefer.

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    • #24223
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all had a great weekend.

      So, following up on DeAnn’s post from Friday, I think it’s fair to say that many of us have been in a funk lately. It’s been a tough year, and we’re all pretty drained from hibernation mode. I know I’ve been feeling this way lately, and I’ve been feeling more tired than usual. For those of you who read my column, you know that my service dog passed away last month. Also, my Mom had knee-replacement surgery that same week. Needless to say, it’s been a lot to manage.

      There’s no easy way for us to cope with everything going on in our world, or in our personal lives; but we can still support each other. One of the things that’s been helping me is going for walks as often as I can. Yes, I still say “walks” even though I’m non-ambulatory. Just getting outside a little bit everyday improves my mood significantly.

      Since my Mom’s been recovering and can only assist me with small tasks, I’ve had friends and neighbors help me out. My cousin has been coming over on weekdays, now that he’s home for the summer. It’s been nice to go on walks with him, as he can help me if my hand slips or something. I’m definitely ready to get back in the world once all this is settled down. For now though, walks and small get-togethers help me manage my stress levels and practice self-care.

      Do you go out for walks around the neighborhood? Do you have any other outdoor activities?

    • #24240
      Patrick Lenihan
      Participant

      I walk the dog around the neighborhood almost every day. Today we did a 4.5 mile stroll. I like to walk (roll) down to the bay and watch the sail boats. I am also always looking out for orcas because they have been in the bay twice in the last month but both sightings were a couple of hours after I left. I fly kites and do what I call wheelchair hiking on trails in our state and national parks.  I also like to grill and have food and drinks in the yard and sit out by the fire pit. I like to sit in the yard while practicing playing harmonica.

    • #24241
      Kevin Schaefer
      Keymaster

      That’s great Patrick! Yeah, I too enjoy sitting in the yard and listening to music on my phone.

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