I joined this site last year, but I haven't been on in a really long time. I feel bad about it because I need support and I want to support others, but I guess I felt a bit out of place because I have not been diagnosed and I can't share personal experience from that point of view. I know all...
My mom has taken Baclofen for years for spasticity. I don't know how what her dosage is or has been. It helped to some extent but didn't always completely relieve it. Like Joyce said, sometimes her dosage made her very tired and she slept most of the day. Definitely ask your doctor about it.
Hello, and a bittersweet welcome. I'm sorry I can't give you detailed advice, as my dad handled all of the specifics, but I do know my mom draws SSDI and has been for some time. Might have been when she had to stop working. She too got laid off- she was a preschool teacher and they made her...
I must admit I am surprised to hear that everyone here finds most people don't know what ALS is. PLS is the disease that runs in my family, and I knew no one outside of a MND diagnosis would know about it. But I am shocked ALS isn't more well known. There is a "Michael Fox" of ALS- Stephen...
I need some advice on this topic. It's something that has been bothering me for a long time.
So for those that haven't read my background, my grandfather suffered from PLS, probably for 20 years. He lived with my family at home, moved around with us, we took care of him until he passed 13...
I think it is normal. PLS does affect the bulbar region. My own mother started having trouble with her speech about 5 years into the onset of her PLS. Slurred words and trouble verbalizing. It's been 11 years now and she doesn't talk much at all. When she does, it's mostly mumbles (she does...
Last weekend was not only Father's Day, but also my parents' 39th anniversary. Long time :smile:. I went over to visit to celebrate both on Sunday. I brought my parents champagne and roses, because after all they've been through, they certainly deserve acknowledgement for 39 years of marriage. I...
I forgot to add that my mom goes through plateaus and rapid declines in condition. She'll be "steady" for as long as a year, and will then show very fast decline in just a few months. I do hope your symptoms slow down soon.
Hi lightbeing, and sorry to say welcome to the community. Unfortunately I can't shed much light on your question. I know that it took about 2 years before my mom was totally wheelchair bound, and over the next couple she lost control of her upper limbs. I don't know how quickly it progressed in...
Hi marylou, and welcome. How long have you been having symptoms and seeing doctors? Are your doctors certain it is PLS? It took several years for my mom to be properly diagnosed with it, so don't worry about things you don't have to yet. I wouldn't be concerned for your children though...
sjaza granny,
That study billbell posted is the first research I've seen looking at hereditary links for PLS. I know there isn't much supporting it, but I believe in rare instances it is true. Not a lot of resources are given to studying PLS and it doesn't surprise me that most neurologists...
My grandfather had both a trach and a feeding tube put in during the later stages of his PLS. Anesthesia didn't cause him any problems, and that was over 20 years ago.