Pls
Welcome Vitaly,
I have had PLS for 11 years now. I am always interested in the symptoms of other PLSers. Do you have stiffness? Spacticity...tight muscles? Drop foot?
It's the craps to have the diagnosis however it is also the craps to not have one and wonder what could be wrong with you. It took almost 8 years before I was finally diagnosed. I finally went into the ER when I was having a bad day and my husband said, "I'm not leaving until you figure out what's wrong with her."
Pain from the spacticity can be a challenge. I try to keep my feet, legs and torso as warm as I can since getting cold can make it almost impossible to move.
I still work, (I can type some days if I keep my hands stablized...I have an asssistant to does most of my hand work...my voice is still strong for most of the day. I walk short distances, travel...takes a bit of preparation and I still get out to go places...although everything takes effort I talk to friends with ALS and no matter how hard they try, they struggle more than I do to make life happen.
DOn't know many others with true PLS. It's a world of daily adjustments. I think of it as riding a wave...Sometimes I'm on the surf board, sometimes I fall off...sometimes, I'm struggling to get back into the water and often I struggle to get back to the stable ground of the beach.
I try to make about one outting a day if I go out. Otherwise, I get overtired. Not use to pacing myself, however if I do...I am ready to go again the next day.
You're the age of my son. I feel sad in one way that you have PLS...in another way, we all struggle in life with something. Compost is made from crap. PLS is the crap that only the Lord (my personal faith..to make each day the best I can make it. AND I can't do it alone.)
Find something you love to do. You could live for YEARS with PLS. I think of the people on this site who year after year are there for people with MND's cheering them on from their computers, power chairs, communication devices...THEY are my heros!
I allow myself to feel the feelings and then move on with living. I hope I have encouraged you Vitaly that life isn't over with the PLS diagnosis...you have come to a Y in the road...After stomping up and down letting it all out how you feel inside....think about your options and choose...All the best! Frizz