Fab thanks!

Hi! This looks really interesting but I am in Sweden so 6pm ET is midnight here 😴😅
Is it going to be recorded so that it is possible to watch it after? Many thanks Anna-Lisa 😊

Difficult one - probably arms are worse as can still do so much with useless legs 😅👩‍🦼

Out of interest would you say your quality of life/mental health is better with the trac or the 24/7 NIV?

I know this is an old one but diagnosis is better sooner - i feel lucky that I have a brain that worked it out early and then I could focus on that until the neurologists caught up
Honestly it was the only thing that kept sane as I have to know and understand my body 😅

I would go for the longest walk into the deepest part of the forest now that spring has come

This is in Sweden - i moved here from the UK in 2018
Councilor I also have contact with.

The neuro rehab team is made up of physiotherapist, speech therapist, occupational therapist, counciler, nutricianist and a "rehab co-ordinater"
I have most contact with physio - therapy in a warm pool & assessments, speech therapist but there isn't much she can do now except test and monitor & OT

4 years into diagnosis process - long and complicated process of elimination
Neurologists have been the biggest struggle
PLS diagnosis finally - now LMN symptoms ...
Must say I have the best rehab team around me from the start that have supported & provided the diagnosis evidence

What was your first symptom?

First symptom was that I was struggling with my uphill training intervals - at the time I was a professional cross-country skier in intense training

As my symptoms were/are prodominantly UMN it has been a long 4 years of chucking out every other disease

Now LMN symptoms started 😅

Have to add this picture of Clara, who's 6, taking full advantage of my permobil features in the sun at lunch 😂

Not yet but it's on my list for next neuro visit

My thing at the moment is struggling to breathe, especially laying on my side; eventually I drop off only to wake a few hours later dripping in sweat (which I've read is a body shock reaction to lack of oxygen)
Not to mention pressure pains...😅