Medical Update

Hi all,

Up until the past few weeks, I don't feel that there has been much to report regarding my health. I've gotten progressively more fatigued, have more slurred speech, more trouble eating, yadda, yadda. The past couple of months things have taken a somewhat more dramatic (for me, at least) change. The most obvious new physical symptom I've developed is clonus. I had some jaw clonus (feels just like your 'teeth chattering' for no reason) for many months, but I now have clonus in my extremities. Unfortunately it is making my balance more unsteady. The other rather significant symptom I've developed is marked dyspnea (shortness of breath) with exertion...to the point where I can only speak in one-to-two-word sentences. I saw a pulmonologist in Indy last week and he has changed me from my BiPAP to a non-invasive ventilator at night (AVAPS) and has put me on a 6-week blitz of nebulized short-acting and long-acting bronchodilators as well as steroids. This, coupled with my immune deficiency (treating my inability to fight the bacteria that causes pneumonia) is a concerning development. Mostly, though, I just get frustrated because my phyisical activity and sleep are so negativly affected by my breathing.

So, you might see me in my wheelchair, or walking with a "rollator" walker. All this said, I don't think I "look sick" and I'm glad of that. I'm trying to get sun whenever I can to cast off the winter-pale and I laugh and joke as much as possible! Come join me on the deck or front porch! Bring your sense of humor...it is the only requirement.

Love, Claudia