I'm just back home from a week on Maui. My husband, Bob was finally diagnosed the end of November after years of increasing and worsening symptoms. At the time of diagnosis, his speech was very difficult to understand, eating was a problem, as well as the falls and leg cramps. The PSP was moving along at an unbelievable rate. By the end of January I was already feeling the effects of caregiver burnout, and feeling a whole lot of guilt for not being able to fix this, or even make him comfortable at times. I have wanted to blog before but it all seemed to be about me, poor me, crying all the time, feeling helpless and out of control. Then I had an opportunity to go to Maui for a week in March. At first there was guilt and I thought there was no way I would be able to leave Bob here, but thank goodness for my kids. They knew I was loosing my mind and needed a break, they would look after Bob and they encouraged me to go. From that time, the end of January until my scheduled departure March 7th, Bob had become week and lethargic, wasn't getting much food down, and weighed 97 lbs. We saw his GP the week before my scheduled trip, he referred to the nutritionist, who went over his options: have a feeding tube placed or don't, this is a life or death choice she told him....YIKES!! That was blunt and to the point! He typed out that he needed to do something. The day I left, they put him in hospital, were going to do a feeding tube through the nose, didn't think he would be strong enough to have the peg tube placed. Anyway, they got him well enough with just IV fluids, and got his electrolytes to where they needed to be, and sent him home for two days, and on the third day took him to have the peg placed. That was four days ago. I got home today, still haven't unpacked! He is still in hospital, they are trying to sort out his feedings, can only start with small amounts at a time. He has put on 3 lbs already and has lost the pasty grey hue and has a nice healthy color in his face. His strength is getting better and surprisingly, his speech is better...I didn't need to have him use his keyboard communication device at all! Anyway, I thought Bob was choosing death, which was not good for my sanity, he is doing well now and I am feeling recharged! If you are giving care to someone with PSP, and get to close to that breaking point, I highly recommend taking a break, not just an afternoon, take a weekend, take a week and rest and recharge yourself. you can't look after anyone else if you don't look after your own health first! And ya, you don't have to go to Maui, although it is very nice!
joan 
Excessive Weight loss 
Feeling Sad
New to PSP and to this site-not so new to PSP symptoms
Don't know whats happening
Someone else lost to CBD
