The things I miss most because of my OPMD

General
1
  1. Getting down on the floor with my dogs.
  2. Eating anything I want.
  3. Driving a car.
  4. Walking through a museum.
  5. Legible handwriting.
  6. Speaking clearly.
  7. Showering standing up.
  8. Long walks.
  9. Being at eye level during a conversation.
  10. Sitting in any chair I want.
1 Like
2

Hello cubs fan,

I know exactly what you mean it’s hard to do anything. I try and push myself but then I get really tired. I just pray for strength everyday.

I read something about BB-310 I am going to the doctor to get more information. I will try anything.

1 Like
3

I totally agree with your list CubsFan but I would add one more. For me, anyway, I wish I could lie down on any bed. But I cannot as I would be in danger of drowning in my own saliva.

1 Like
5

Getting on the floor with my dogs (and walking them) is also my #1. Showering standing is #2.
Going to the grocery store by myself is also big. I loved to stop in once a day after work to get the ingredients I needed for dinner. Now I have an upright walker–which is too heavy to lift by myself into the car.
I got diagnosed at 39 and it has progressed so fast. I am way worse than my 75-year-old mother. She’s not great but doesn’t need a tub chair. I know there are much worse–Duchenne’s from birth particularly–but I am grieving the life I used to live. I used to work out every morning at 6:30–It was a joke how dedicated I was. I was 115 pounds and looked normal. I am 85 pounds now. I am embarrassed when I see people from my old life who are so shocked at how unhealthy I look.

Thank you for your post.

1 Like