Hi all,
I've looked at the forum a few times over the last 11 months since my Dad was diagnosed (69 at the time) but this is my first post. His first symptoms were 11 months before (approx May 2020) with slurred speech. As seems to often be the case he was miss diagnosed (mini stroke). 6 months later he had difficulty eating and excess saliva, he eventually had a neurology appointment. He was on his own and told it's not confirmed yet but likely MND and given a leaflet with really worrying statistics. After a difficult month or so, he was finally diagnosed, started riluzole straight away and referred to the Community Team.
Our Speech Therapist is amazing - helped with swallow, speech to text apps and provided a light writer so he can type and it speaks for him (too late to bank his voice sadly). We also have a great Physio who has provided a neck brace as he has weakness in the muscles in the back of his neck and assists with breathing/cough techniques.
He had a feeding tube in December, he put it off as late as poss as he is squeamish. By the time we finally got the consultant to approve it and the appointment came through it was nearly too late (thankfully a second doctor managed to place it). Dad has coped brilliantly and I would suggest to anyone to consider it early. Eating was an absolute chore for my Dad and with risks of choking, now he uses the tube for all nutrition and only has the food he likes (pureed chocolate cake and ice cream although this is increasingly difficult.) His meds are now liquid suitable for the tube.
The current challenge is clearing thick mucus which causes a blockage in his throat as his cough is too weak to clear it. He's just started using a nebuliser and a cough assist machine but any suggestions on this would be gratefully received as it is really horrible for him. He has 2 meds to try to help (Glycopyrronium Bromide and Carbocisteine) but it remains very difficult.
It's likely his carbon dioxide levels are raised at night. The indication is that Non-Invasive Ventilation will be recommended. Other thoughts are about future mobility challenges with breathing declining, I was thinking of a stair lift however its recently been suggested this may be difficult as core muscles are likely declining and stability on a stair lift may be affected.
There's so much I don't know and wouldn't have thought about, I like to plan and be ahead of things but feel like I'm always one or two steps behind the illness, despite trying my best to ensure he gets the best care.
He is lucky to have very good mobility so is living independently, going for walks and gardening. Sadly he has stopped his sports (boxing, table tennis, running and cycling) due to his breathing declining. In amongst all the medical stuff we try to have good times, a simple walk on a sunny day.
Sorry, this has turned into a long post! I'm not known for being concise!
Claire
I've looked at the forum a few times over the last 11 months since my Dad was diagnosed (69 at the time) but this is my first post. His first symptoms were 11 months before (approx May 2020) with slurred speech. As seems to often be the case he was miss diagnosed (mini stroke). 6 months later he had difficulty eating and excess saliva, he eventually had a neurology appointment. He was on his own and told it's not confirmed yet but likely MND and given a leaflet with really worrying statistics. After a difficult month or so, he was finally diagnosed, started riluzole straight away and referred to the Community Team.
Our Speech Therapist is amazing - helped with swallow, speech to text apps and provided a light writer so he can type and it speaks for him (too late to bank his voice sadly). We also have a great Physio who has provided a neck brace as he has weakness in the muscles in the back of his neck and assists with breathing/cough techniques.
He had a feeding tube in December, he put it off as late as poss as he is squeamish. By the time we finally got the consultant to approve it and the appointment came through it was nearly too late (thankfully a second doctor managed to place it). Dad has coped brilliantly and I would suggest to anyone to consider it early. Eating was an absolute chore for my Dad and with risks of choking, now he uses the tube for all nutrition and only has the food he likes (pureed chocolate cake and ice cream although this is increasingly difficult.) His meds are now liquid suitable for the tube.
The current challenge is clearing thick mucus which causes a blockage in his throat as his cough is too weak to clear it. He's just started using a nebuliser and a cough assist machine but any suggestions on this would be gratefully received as it is really horrible for him. He has 2 meds to try to help (Glycopyrronium Bromide and Carbocisteine) but it remains very difficult.
It's likely his carbon dioxide levels are raised at night. The indication is that Non-Invasive Ventilation will be recommended. Other thoughts are about future mobility challenges with breathing declining, I was thinking of a stair lift however its recently been suggested this may be difficult as core muscles are likely declining and stability on a stair lift may be affected.
There's so much I don't know and wouldn't have thought about, I like to plan and be ahead of things but feel like I'm always one or two steps behind the illness, despite trying my best to ensure he gets the best care.
He is lucky to have very good mobility so is living independently, going for walks and gardening. Sadly he has stopped his sports (boxing, table tennis, running and cycling) due to his breathing declining. In amongst all the medical stuff we try to have good times, a simple walk on a sunny day.
Sorry, this has turned into a long post! I'm not known for being concise!
Claire
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