Hi All,

My mum was diagnosed with MND- progressive bulbar palsy in July 2018 10 months before the diagnosis she has started losing her speech we never thought it would be something serious she sounded like she had a sore throat that never got better! ‘‘This was October 2017
July 2018 one night at 4am she started having breathing difficulties and was admitted to hospital every thing in her body seemed fine but the suggested a nerve test as there is history of Mnd in the family - my grandmother ( mums mother was diagnosed at 80).
Diagnosis confirmed we were shattered mums life changed from being such an active woman to feeling tired all the time, speech issues, swallowing difficulties ( dyspaghia) , she was on puréed food, having mood swings.. a lot of secretions in the mouth. She would sit all day with tissues wiping her mouth. I live in London and I stayed a month with her trying to look for speech therapists for her speech exercise only to find there were only 8! And 1 was available.
We started physiotherapy for her thrice a week to keep her muscles going. We tried Rilutek as prescribed by her neurologist but it seemed she was having side effects. We then found a mnd clinic in Kerala and she was on homeopathy medication for a year. She was off her thickner for drinks, and seemed quite stable.
Things took the worse turn last year October 2019, she was admitted again in one of the hospitals in Kenya. She had choked on milkshake and the secretions were quite a bit. She had a very unusual cough that drew concerns.
At hospital it was decided she needed peg tube. She had that done and took long to recover from surgery. Her neurologist on one visit noticed she wasn’t breathing well she went into ICU where she was intubated and then reintubated after three days. I remember being called 3am in the morning two nights In a row to be told she had a cardiac arrest or she was unconscious.
She spent 4 weeks in ICU and was moved to HDU where we were told we should prepare for home care. We got a portable ventilator for her which gave us even more trouble. Every 72 hours mum would be down, anxious and unconscious we later find out when a blood gas test was done the machine was not supporting her exhalation. She could inhale though. And the co2 in her body was rising and o2 dropping. This happened for three weeks until we replaced the ventilator. She is still in a private ward in Kenya under critical care. We just don’t see how we can even provide support for her at home. The ICU nurses are so expensive. The hospital bill has been crazy almost £40,000 but we are reassured she is being looked after the medical team.
This is her third month in hospital.
She is fully conscious and has the best team
The only concern I feel is mums mental health how long is she going to stay in hospital ?
Can we really afford the ICU nurses.
We have been through some tough 7 weeks of our lives. I came back to London before Christmas. Mum turns 60 next week and I can’t wait to see her !!

Wishing everyone on the journey lots of love and positivity we need it xxxx