TippiLeigh
Active member
- Joined
- Jun 13, 2020
- Messages
- 96
- Reason
- DX UMND/PLS
- Diagnosis
- 07/2020
- Country
- US
- State
- CA
- City
- XXXX
Thank you everyone for all your feedback. I really appreciate it! I FINALLY got an appointment with the academic hospital in a couple of weeks, although this first one is just going to be a video appointment. At least it gets the ball rolling. It's a few hours away, so I hope that this way they can bundle all the tests and everything into one visit the next time. I finally broke down and got a rollator a couple of days ago. I'm mad I waited so long, but I think I was just being self-conscience. I'm in my mid-40's, but I look I'm in my late 20's or early 30's. I was worried how it would look for a young, able-looking person to be scooting around with that. I know it's silly, but I'm still getting used to all of this. It's so much easier to walk with that though. So, so much easier! I was using a cane but it was just too hard for me to be coordinated with it and I kept dropping it. I can no longer really move my left foot/ankle, and my whole left leg is very stiff, so I walk like I have a whole leg cast on. My hands feel more like clubs every day, thus the reason I couldn't really manage the cane very well. I also found out some good news that last October the academic hospital I'm going to opened a satellite ALS clinic here in the town where I live. They're still kind of getting set up, but they'll have a nutritionist, physical therapist, occupational therapists, speech therapists, and social workers. They'll also have a doctor go every 3 to 4 months to see patients. That's great timing for me and my community!