Can he eat soup or even just bouillon? Does he like Popsicles? You can make healthy popsicles by grinding up strawberries or other fruits, with some yogurt, put in popsicle forms and freeze. I used to make those for my kids and they loved them, especially when they were sick. If he can eat watermelon that has a lot of water (and iron) in it.

Thanks again, everyone. I am following up on all your suggestions.

Robin, you are right that the UTI for which he has been on antibiotics is not responding. I brought in a urine specimen this morning, and the doctor has now prescribed a different, more powerful antibiotic that I am going to start today. In addition, I did take Philip for the upper GI test his doctor wanted, and indeed it showed that his esophagus goes into spasms when he swallows, and that is what is causing the intense pain in his chest that leads to the cries and howls as the food goes down. I understand this ailment goes with the dysphagia but it may respond to some form of medication. I'll see what his doctor has to say when she gets the report. As for the seroquel, I have decided not to ask for it after all. I'll see if his complaining subsides once these two conditions start to improve.

Meanwhile his overall condition is suffering. He can barely stand up, even with support. His sleep is disturbed by the pain of urination, and his eating is disrupted by the pain he feels when swallowing. It is a nightmare for both of us.

Doris

Doris,

I'm glad you've gotten to the bottom of it. UTIs can be debilitating -- physically and cognitively.

I also have esophageal spasms. (I am non-neurodegenerated, as far as I know.) This was diagnosed with some sort of barium swallow test. For me it's not associated with dysphagia. Coincidentally the radiologist who did the test told me he also has these spasms. He suggested that I keep a diary of what foods I eat as he found that his spasms are triggered by chicken! I think I've figured out for myself that the spasms are triggered when I'm really hungry and wolfing down food. After being more careful about my shoveling speed, I haven't had these spasms in years. I hope something straightforward can be found for your husband!

By the way, are you intending to donate your husband's brain? I've been working with a technician in the east bay who is reasonably priced for the procurement. I've got brain donation on the brain today. Wrapped up one local LBD case over the weekend and worked on another LBD case today. Wonderful that so many LBD families are pursuing brain donation!

Robin

Robin,
Regarding brain donation, yes, I intend to do it. I have contacted the mortuary and they are agreeable. I have also mentioned it to his doctor and neurologist, and both will participate. I have specified brain donation on Philip's advanced care directive as well. I just haven't submitted the paperwork.

I am now beginning to consider hospice care. I don't know if Philip qualifies or not, but with the persistent infections, and the increase in his weakness due to the problems of eating and drinking, I think it would be helpful to have him under regular supervision. I'll mention it to his doctor to see what she thinks.

I'm glad to hear that spasms of the esophagus are common. Philip's seem to be especially unbearable, probably due to his malfunctioning autonomic system. I'll let you know what the doctor prescribes.

Thanks again,

Doris

Hi Doris,

Yes, I'm interested in knowing the anti-spasm medication too.

Given what both you and your husband have gone through of late, I think hospice is an excellent idea. (This will help you both.) I'm sure your husband qualifies. I recommend you speak to your neurologist about getting a referral. And ask around to get recommendations for agencies taht seem to be performing well right now. I've heard good things about East Bay Hospice and terrible things about Sutter VNA & Hospice (at least the Concord office).

Robin