Anna-Lisa Palombo 🇬🇧🇸🇪🇮🇹

Todd Hido

Neurology appointment tomorrow, lots to discuss but breathing/sleeping/talking - i.e. diaphragm weakness being number one
It sucks majorily
#ALS #MND #PLS #Neurology #ChronicIllness #wheelchair_adventures #WhatsMeantToBeWillBe #WheelchairLife #wheelchairgirl #NeuronesGoneHaywire

Fab thanks!

Former chair of the Tennessee Libertarian Party 👇🏽

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 😊

Six more Palestinians have been killed and others injured when Israeli forces bombed a house in the Tuffah neighbourhood of Gaza City.

🔴 LIVE updates: aje.io/ixal8c

ALS stinks.

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

A landscape picture of the sea with bright blue sky sun shining off bits of ice still in the water. A dog in the foreground in the water

Slept awful, struggling to breathe and dripping in sweat about 2am - woke up with a headache, shattered & still struggling with breathing so I packed some coffee and took Lilja (malamute) out with my permobil - perfect ❤️🇸🇪👩‍🦼

#MND #ALS #PLS #Sweden

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

‘Eid of Sadness’

Gaza marks festival amid Israeli bombings, lack of food — in pictures aje.io/dpn42m

Yep thats me waiting to be an adult

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

Wheelchair Girl

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 😅

A 0.5 perspective photo of youngest daughter sat in permobil wheelchair with ot raised up and reclined

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

A picture of salom slopas with blue sky in the background

A picture of two sisters, one is longer in a t-shirt and midlength Brown hair ski trousers drinking a caprisun and her smaller Sister with blonde hair has pink ski salapetes and has a silly smile on her face. They are both caucasain and one is 10 and the other 6 years old

A grey and white alaskan malamute is laying asleep in the shade

A selfie of myself a white woman in the sun with a pink hat, sunglasses and thick red winter coat

Todays joy at spending the weekend at Hassela ski resort only an hour away from us - was worried about being sad I could not ski or even come some close to slopas but it was ok - my girls & Ben had a fantastic time & I got in dog walks & sitting reclined in the sun in my permobil watching ☀️👩‍🦼⛷️💛
#MND

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...😅

Being ill with PLS is extremely lonely - friends forget to check in or come for a coffee while thier lives go forwards & mine stands still 🙄
#PLS #MND #ChronicIllness #LeftBehind #ALS #ALSWarrior #PrimaryLateralSclerosis #ChronicPain #MuscleWeakness

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