Hi Greg, how are you travelling, I went AWOL for a year. I started on ozanezumab trial in Australia / brisbane. I know there hoping to combine in with the ck357 . I watched a video on it. My doc seems impressed I'm still walking at least
Hi Greg, I am also very young at 28 years old and fighting MND. I also have a wife and a little girl on the way. Some days I have so down, and I am just looking for insight and a friend to help me cope with this terrible disease. Please share some insight on how you deal with it if you would not mind doing so.
Hi Greg. I have read your story and am truly sorry for Your diagnosis. The fact that you are a father makes it all the much worse. Like you, I am also in my 20s and am currently going through the ALS horror. I have not been officially diagnosed yet, and I hope never to be, but was wondering if you could elaborate a bit more on your symptoms/timeline. I started with twitching all over about 1 year ago, in October, started to feel heavy on my feet. February of this year, have trouble swallowing/clearing throat and right hand weakness. Twitching now widespread with cramping. There is some weakness in my right hand, but hasn't yet hindered me from doing anything. I have an EMG on my right arm/hand upcoming on the 8th. My other limbs were tested a few weeks ago and they were normal. The clinic called my stmptoms "noteworthy," but said ALS still unlikely. I wish you a slow progression and many more years with your family. Evan
They told me early February. Soon, I hope. I've read that everyone gets the drug for the first week and then starting the 2nd week they get split into real drug and placebo groups. Can you tell which you're on? A side effect is dizziness. . A friend was on a different trial last year and was pretty sure he was on the drug cause he lost the taste of food. Everything tasted metallic. Good luck!
That's great that you got in a trial. That is your best home right now. Praying you get great results. With the new stuff that keeps coming on I feel your going too. Keep having positive thoughts. Take care, Kim
How are things going for you? Did you get in a clinical trial? I am so hoping you get in one and get great results. I am not dad's caregiver but am currently staying at his house due to some unfortunate marital issues. I'm hoping desperately that things will work out. I have been so stressed worrying about my dad so it didn't help matter. I do feel a little less anxiety staying at my dad's because I can better keep a eye on things. Hang in there Greg because I feel they are making tremendous break through in finding the right medicine to put a halt to progression of ALS. You are in my prayers. Kim
Greg - did you start the ck357 or just qualify for it? I'm waiting fir Michigan to get up and running with it and I'm 'on the list' to be contacted to run thru the tests and see if I qualify. Hoping you get the drug and it helps!
Hey, greg, saw your post about carrying things up stairs. I know! I believe some of it a balance problem. We begin to lose our balance and carrying something on 'one side' throws us off. (try cautiously standing on one foot). I carry my groceries to the porch and set them on the porch (several trips) and then get on the porch and pick them up and carry them in the house. I no longer carry them up the stairs. Be careful of falls! They take you by surprise and can be dangerous because our arms don't react fast enough and come up to break our fall.
Yes I'm a nurse and I currently work in an hospice.....when my symptoms started I and my colleagues thought it was something stress related due to work.....unfortunatly things are getting worse and even neuro confirmed there is something wrong with me so here I am, a nurse and a patient at the same time,waiting in this Limbo. I really hope you'll stay quite well for a lot of time, I read that als in young people is usually slow progression. Hugs
Thank u Greg you're always very kind, as you said better thing to do is trying not to think about it and living the present. I'll do my best to stay positive. Today my legs seem to be weaker than usual....they're shaking a lot when I walk down stairs...tomorrow it will be a hard day at work, I'm a nurse and I have to stand and walk all the time.
Hi Greg I think about you a lot as you are very young like me. May I ask you how do you find the strenght for going on? I haven't a diagnosis yet but fighting with this symptoms is driving me crazy. I'm always sad and always think about the past when I was fine and healthy....I don't know the name of my disease yet but I know that is ruining my life and my attitude. Hugs Kiara