This is where we're at

I promised an update and a "real" post in my last abbreviated one. So, even though I still am not sure what to write - here we go.

The disease continues it's advance. My wife is at a point now where swallowing is a problem at times. We sometimes work for 10 minutes on one pill. The good news is she does not have to take much. We have cut out the vitamins and supplements, it became too much of a hassle every day to get them down. Also, between her jaw problems (TMJ, see previous posts) and the swallowing, we have to be aware of her nutrition. Especially without her supplements and vitamins. Thank heavens for Boost.

Speaking is pretty much gone now. She will croak out something from time to time, but mostly she talks in a whisper. With my poor hearing that means a LOT of repeating and questioning. I feel like we are playing 20 questions a lot of the time. We do have a speech therapy session scheduled for next week. I am not sure what can be done at this point, but we will try. It has to be frustrating to her to not be able to communicate. I know it is for me on this end. We do have an eye blink system set up for yes and no questions. I felt like that was "giving up" at first, but it definitely helps. I decided some communication was better than none.

Her life pretty much revolves around her recliner and the TV. Her eyes and concentration do not allow her to read. (she had trouble focusing her eyes and they have a tendency to dart around - another wonderful part of this disease) Her tremors and lack of ability to move make using a computer out of her reach as well. Throw in the above problems with speech and that leaves TV watching as her pastime. The lack of speech even makes using her phone an impossibility.

I really had no plan today, so I guess that is it. I thought I would at least update things. I would still like some responses from any and all that read this out there. I see by my statistics and such that there are some of you from all points in the northern hemisphere. Drop me an email. If you are going through this disease as a patient or a caregiver, I would love to hear from you. If you have questions, ask. We'll be here.