Swallowing

[Sammy88]

Hi all, Lately when I swallow the sound is rather loud . My voice is very weak to. I'm 2 years into my als journey and still haven't seen a neurologist since diagnosis.

I did have an appointment for my breathing last year at my local hospital, but the doctor told me to cough into the air once and said your fine

I found this rather worrying especially as the follow up letter said I was unable to do the breathing test ....what breathing test, I wasnt offered anything. So my 2 years with als has been without any medical help.

It's getting scary now that's why I'm asking for alittle information on swallowing. It takes me ages to eat. Will my swallowing suddenly go.? I'm scared.

 

[Nikki J]

Hi Sammy it is good to see you but I am so sorry that you are not getting proper care still.

Why does it take ages to eat? Is it hand weakness only or is your swallow already affected? You don’t go from totally fine to no swallow overnight but having to eat slowly is often a sign ,along with having issues with some textures, coughing after swallowing losing weight and other changes.

You can adjust textures. People often do well with smoothies. Tucking your chin to swallow also can help. Can your gp order a swallow study or an evaluation with a speech pathologist? You have been so neglected it is really shocking. I wish someone would advocate for you. The MNDA should be ashamed

 

[Sammy88]

Hi Nikki hope you are well . It takes me ages to eat because my chewing isn't great my tongue seems slower . I worry about swallowing especially as my throat keeps having spasms. It completely closes for a few seconds, I can't breathe or talk.

My legs have gone, arms strong but weak hands. I can never get a GP appointment .
It's shocking the lack of nhs care. I called social services in February this year but they were no help. They said my care was to complex for them and filled out a continuing healthcare form for me . Unfortunately the nhs refused it.

I can handle the legs/hands weakness but the swallowing issues are frightening especially with no medical care. I've become my own occupation therapist lol. I struggle to transfer. I have a commode but when I try to transfer onto it,.it tips over (no toilet downstairs to many transfers with stairlift) so I came up with the idea of taking the back off commode and getting husband to drill it to the wall in the downstairs large cupboard . Then getting a chemical toilet to go underneath.

I have reached out to the MNDA but they were no help at all.

 

[krnNdug]

Hello Sammy88.

I am so sorry that you had that experience when you met with the physician. Have you contacted the motor neuron disease association in London? I know that they have offices all over London. I have the contact info for the South London office. Maybe you could start there.

ALS/MND is challenging enough with support of a physician. To do it with the "extensive" breathing test you did. That was mentioned tongue in cheek.

I am glad that you found this forum. The moderators are excellent and there can be nice contributions from others. They have helped me many times over the years.