Whispa
New member
- Joined
- Jan 11, 2021
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 12/2020
- Country
- AU
- State
- VI
- City
- Orford
Hi all.
I lost my mum a few days ago, and right til the end doctors were hesitant to actually call it MND, just that it was equally devastating. Noticable symptoms started approx 18 months ago, but may have been earlier but subtle. She had weakness and loss of balance in legs, worse on the right. Initially speech started to occasionally slow during some sentences, and eventually became permanent. We dragged her every doctor and test we could but due to covid most were unavailable til only a month or so back.
2 weeks ago she had another fall and went to a different hospital via ambulance. From there it was downhill fast but before and up til the end, there was the leg weakness, slow and slurred speech, swallowing issues, severe sleep apnea and crippling fatigue. However everything was still working, slowly but there was no actual failure. Aside from a walker and a few Kmart aids she was living independent until hospital. Steroids were tried at one point and massively improved things for 2 days before going down again. She only managed to get a cpap machine 4 days before hospital but one of those days was again major improvement.
But once in hospital, leg weakness, speech and swallowing got worse and eventually she was in so much pain from being bed bound, that she was sedated, and eventually just stopped breathing. But she still had full use of arms and could write til the end and could still move her feet just not stand. Nerve conduction study was mostly clear, mri and ct scans all clear besides spinal pinched nerve. Very little fasticulations or atrophy until last 2 days. She did have the uncontrollable crying, was very pale from low oxygen and her features went back to almost child like towards the last few months looking back on photos. I know it’s never going to help or bring her back but just curious if anyone has seen this variant before?
I lost my mum a few days ago, and right til the end doctors were hesitant to actually call it MND, just that it was equally devastating. Noticable symptoms started approx 18 months ago, but may have been earlier but subtle. She had weakness and loss of balance in legs, worse on the right. Initially speech started to occasionally slow during some sentences, and eventually became permanent. We dragged her every doctor and test we could but due to covid most were unavailable til only a month or so back.
2 weeks ago she had another fall and went to a different hospital via ambulance. From there it was downhill fast but before and up til the end, there was the leg weakness, slow and slurred speech, swallowing issues, severe sleep apnea and crippling fatigue. However everything was still working, slowly but there was no actual failure. Aside from a walker and a few Kmart aids she was living independent until hospital. Steroids were tried at one point and massively improved things for 2 days before going down again. She only managed to get a cpap machine 4 days before hospital but one of those days was again major improvement.
But once in hospital, leg weakness, speech and swallowing got worse and eventually she was in so much pain from being bed bound, that she was sedated, and eventually just stopped breathing. But she still had full use of arms and could write til the end and could still move her feet just not stand. Nerve conduction study was mostly clear, mri and ct scans all clear besides spinal pinched nerve. Very little fasticulations or atrophy until last 2 days. She did have the uncontrollable crying, was very pale from low oxygen and her features went back to almost child like towards the last few months looking back on photos. I know it’s never going to help or bring her back but just curious if anyone has seen this variant before?
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