vishara
New member
- Joined
- Dec 20, 2014
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- ST
- City
- City
Hello all,
I was diagnosed with ALS in April of this year, about a year after I starting showing signs of slurred speech. So, I'm not newly diagnosed, and have had time to process my situation, but I'm new to the ALS forums, having only registered recently. I realized I would benefit from having more community involvement in my life. That's something new for me even without the context of ALSl, so it might take me a bit to get used to it.
I feel like my progression has been somewhat rapid, though I don't really have much in the way of comparison. Over the summer I started experiencing more fatigue while working (driving mass transit - I'm bulbar onset), and my speech started to decline more. I needed to cut back my work schedule a couple of months ago, and it's cut back really far now. Fortunately, my employer is being extremely helpful in accommodating my needs.
My speech is pretty far gone now. I'm past the point where people are asking if I'm drunk. But if I'm very careful and rested, I can still be understood. Swallowing plain water is problematic, though smoothies are still okay. I realized about a month ago I can no longer eat steak because my tongue gets too tired. Sushi is becoming a problem both due to size of food and my unwillingness to give up on using chopsticks when eating it (using a fork seems like sacrilege). Saturday was the first day I couldn't unbutton my shorts without using a pair of pliers to assist me. Gripping is fine if I use my whole hand, and I can still walk mostly fine. The only affect on my legs so far (other than cramping) is the right foot walking on heel test.
My attitude so far is mostly that of experiencing this as a journey. I'm not really getting frustrated with things, as much as observing, "Oh, I can't do that now." I don't know if, or how much, that will change.
My current intent is to be on the forums and interact a bit. We'll see how that goes.
I was diagnosed with ALS in April of this year, about a year after I starting showing signs of slurred speech. So, I'm not newly diagnosed, and have had time to process my situation, but I'm new to the ALS forums, having only registered recently. I realized I would benefit from having more community involvement in my life. That's something new for me even without the context of ALSl, so it might take me a bit to get used to it.
I feel like my progression has been somewhat rapid, though I don't really have much in the way of comparison. Over the summer I started experiencing more fatigue while working (driving mass transit - I'm bulbar onset), and my speech started to decline more. I needed to cut back my work schedule a couple of months ago, and it's cut back really far now. Fortunately, my employer is being extremely helpful in accommodating my needs.
My speech is pretty far gone now. I'm past the point where people are asking if I'm drunk. But if I'm very careful and rested, I can still be understood. Swallowing plain water is problematic, though smoothies are still okay. I realized about a month ago I can no longer eat steak because my tongue gets too tired. Sushi is becoming a problem both due to size of food and my unwillingness to give up on using chopsticks when eating it (using a fork seems like sacrilege). Saturday was the first day I couldn't unbutton my shorts without using a pair of pliers to assist me. Gripping is fine if I use my whole hand, and I can still walk mostly fine. The only affect on my legs so far (other than cramping) is the right foot walking on heel test.
My attitude so far is mostly that of experiencing this as a journey. I'm not really getting frustrated with things, as much as observing, "Oh, I can't do that now." I don't know if, or how much, that will change.
My current intent is to be on the forums and interact a bit. We'll see how that goes.
