New Diagnosis and eating & speaking

[TheBean]

Hello everyone.
I was diagnosed on June 4th, though I have "known" for about a year. I have been having difficulty speaking clearly and chewing for about that long as well. If my symptoms started around a year before diagnosis, and then about a month after diagnosis I began experiencing lower leg weakness, does that mean the disease is progressing rapidly?

I have noticed that my speech is slower and harder to understand. And I am not chewing is more difficult. How long after a diagnosis of bulbar inset is it before I will no longer be able to speak? And does not being able to eat go along with that at the same time?

On a different topic, my husband keeps asking me every 2-3 days when I think I am going to die, what he wants to do with my life insurance payout and despite absolutely refusing to discuss any of this, he demands to know "right now" what I want done with my body.

Any input/advice is always appreciated.

 

[Atsugi]

re: New Diagnosis and eating & speaking

Hi Bean, sorry to see you back. I was hoping your second opinion would be better.

If you've been having symptoms for two years, and now only beginning to get leg weakness, then I would say your progression is not rapid. My wife was symptomatic for only 10 months. That was rapid. But there is a lot of variability from person to person. I think it's impossible to tell.

I believe the FVC (Forced Vital Capacity) is used by some to gauge progression. Your pulmonologist uses that to measure your lung strength. But I'll let a medical expert come along to discuss those kinds of things.

Honestly, I don't think doctors will tell you anything different than the usual 2-5 years. But behind closed doors (literally) I was able to get several docs to whisper to me "She won't last the year." I never told my wife about that, but it helped me plan. Based on that, I didn't buy a house.

Discussions of EOL issues are usually upsetting. So you might encourage your husband to open his own account here, to get his questions answered without having to discuss it with you so often.

Again, condolences on your diagnosis. The people here are very friendly and supportive. Look around the site and find some interesting (or fun) forums. There are a few comedic personalities among us.

--Mike

 

[MaxEidswick]

re: New Diagnosis and eating & speaking

>Discussions of EOL issues are usually upsetting. So you might encourage your husband to open his own account here, to get his questions answered without having to discuss it with you so often.

Ditto that!


>There are a few comedic personalities among us.

really?

 

[Nikki J]

re: New Diagnosis and eating & speaking

Sorry to hear your update.
Everyone is different so most of your questions we can't answer. For most I think progression is not linear. It may seem that you slide quickly for a bit then plateau. Work with your clinic and try to plan ahead. Watch your weight carefully. don't lose weight. Consider a feeding tube earlier than you think you really need it. Say yes if the doctor says it is time and you want one.
Start learning a text to speech program you can use when you are tired.
Look into nuedexta. Indicated for emotional lability ( inappropriate crying and laughing) which you probably need to report to get it covered by insurance. Some have found it helps swallowing for a while.

 

[notBrad]

Sorry to hear your update.
Everyone is different so most of your questions we can't answer. For most I think progression is not linear. It may seem that you slide quickly for a bit then plateau. Work with your clinic and try to plan ahead. Watch your weight carefully. don't lose weight. Consider a feeding tube earlier than you think you really need it. Say yes if the doctor says it is time and you want one.
Start learning a text to speech program you can use when you are tired.
Look into nuedexta. Indicated for emotional lability ( inappropriate crying and laughing) which you probably need to report to get it covered by insurance. Some have found it helps swallowing for a while.

It has helped both my speech and swallowing although YMMV.