Hi I'm Lisa. I love the beach and feel at home when I go there. My sister and I both have the same rare motor neuron disease that is a form of ALS. My father also probably had this same disease. Our progression is very slow (thank God).
I am bulbar onset with slow progression. I had mostly bulbar symptoms for about 5 years starting in 2005 (nasaly speech, swallowing difficulty, choking). I also had some mild cramping and slight weakness in my left hand. I had symptoms of pseudobulbar affect (pba) uncontrollable emotional laughing and crying.
In the fall of 2010, I started having problems with balance and falling. I started using a walker in public and started having anxiety issues in public.
In NOV. 2012 I have to use a walker in the house and prefer to use a scooter or wheelchair in public. I still use the walker out of the house for short trips. My left hand continues to weaken and the left arm is also weak. My legs have gotten weaker and walking with assistance has become more difficult. My speech has gotten worse (I use an ipad to talk). My swallowing issues have remained the same and I drink a supplement (Ensure every day for the extra calories).
In spring 2013 I started using a loaner travel power chair. Fall of 2013 use a Permobil power wheelcnhair 95% of the day.
December 2014' bad fall, broke hand bone, fractured kneecap, tore meniscus n knee.
Update 2017. Can still stand but not transfer. Use wheelchair all day n hospital bed at night. Left hand has lost most function but can still drive chair and use it some. Fine motor skills waning in right hand. When foods are hard to eat caregiver blends.