Danielle Uskovic
Forum Replies Created
-
@dagmar-munn it”s a great point you raise. For me, I have consciously slowed down due to the risk of accidents and falling. I find that if I try to keep the pace I did pre-diagnosis that I end up having an accident. I have to be much more thoughtful in my everyday activities from cooking to walking or climbing stairs.
My advice for the newly diagnosed is to slow down and be much more deliberate in your activities. After a few falls and a visit to the ER, I’ve learnt that slower is better.
The only exception to this is speech. For me personally, this is the most frustrating and challenging part of the disease. That is, the (in)ability to keep up with friends and family in conversation.
-
Thanks @johnjr for the information
-
Today they have announced some news on it https://alsnewstoday.com/2020/05/29/rescue-als-trial-enrolls-more-than-half-of-patients-ahead-of-schedule/
-
Hi Marianne
I’m in Australia and on a trial called Rescue ALS. It’s a double blind placebo trial. The drug is called CNM-Au8 (gold nanoparticles). I know from being on this trial when the pandemic hit that a lot of hospitals were told to cease all trials. I was fortunate that this study I’m on was given an exception and allowed to continue because it had already commenced before lockdown.
Warmly Danielle