On A Better Note

Bob hit a new rail-walking record this afternoon: 20 times!

I tell you, the man's turned into a regular walking machine.

Losing Chris

Chris has been our neighbor and friend for eight years. She lives just three doors down the block and since Bob's stroke, she has been a godsend to me. She's always willing to help out, pitch in, watch Bob for me so I can run errands, etc. When Bob was in the hospital, she came over every single night when I got home to sit with me on our front porch while the weather was good, and later, to sit in front the fireplace when it got cold. And she listened to me crying, worrying and, later, complaining about his care. She was there the day he came home with a bundle of extra sheets and towels. She carted my wet laundry down the block to her dryer when my dryer broke. She's always been there when I needed her.

This week, I found out, she's moving.

I tell myself that she's just moving across town, really, it's not so bad. But she doesn't drive and pretty much gets around on her power wheelchair these days, so she'd have to take a bus to get here, which is a burden. But the move will be good for her, the rent being cheaper (her landlord is planning on raising her rent $100/month and she just can't afford to stay in that apartment). And maybe we'll work things out at this distance.

But, you know, I am going to miss her like hell....

A Tentative Reason to Rejoice

OK everyone, find a piece of wood and get ready to knock on it..... because (drum roll, please):

Bob's bladder is a bit better!

(whoa, that's a bit of tongue twister, trying saying that one fast.)

He's on his third week of the new bladder medication, Gelnique, and the stuff seems to be, finally, working. Although he still is having some trouble, so it's not perfect but.... The biggest difference is no more bed-wetting. I am actually able to go to bed and sleep through to morning---for the first time in I-don't-know-how-long. So, I am getting some sleep: precious, wonderful, though still dreamless, sleep! And yesterday, he was able to do his leg exercises in 25 minutes, whereas before these same exercises took 2 or 3 hours because of all the bathroom breaks.

But like I said, everyone, are you with me here? Knock on wood, knock on wood, knock on wood.....

Our First "Date Day", Post-Stroke

Last Thursday, the 16th, was our 17 year wedding anniversary. I wanted to do something special in honor of the occasion, so we took the Wheelchair Transport to a local art museum. This was Bob's first pleasure trip since the stroke. Here he is as the entrance:

I was a bit apprehensive if Bob could handle it (with all the bladder problems), so only scheduled us out for a window of 2 1/4 hours, but, of course, the wheelchair transport was late coming to pick us up (Why is that, anyway? When you want to go somewhere fun, they're late, otherwise they come way too early for his doctor's appointments, etc.) so by the time we got there we had to rush to get on the next tour.

Unfortunately, the tour was packed and there was a problem with people standing in front of Bob, who could not see around them, but, all in all, we enjoyed the tour up until the last couple of exhibits when I could tell Bob was getting uncomfortable and then, of course, he had to pee.

So, there we were, in yet another public bathroom for 30+ minutes, Bob trying to pee, and he can't go.  Aaargh. Then, dashing out to catch the wheelchair transport home....

Here's a photo of us, 17 years ago, in the process of getting hitched:

We were married by the justice of peace, and at exactly 4:00 p.m. (our scheduled time) there was a power failure in the court house and all the lights went out---Gosh, an omen???? That's why this photo is so dark. We actually had to go into the judge's office and stand by his desk at the window so we could see what we were doing.

There's a brighter wedding photo on my profile.

Bob At The Rail

(Click to enlarge!)

Here he is, having just set another rail walking record of 15 times!
One month ago, he could only make it 5 times.

He's hot and sweaty 
and showing us some real "tough guy", fighting spirit!

That's our hallway rail, I know--I need to paint it--but who has time?

The Singing Penis & Other Bladder Problems

We just started another new bladder control medication, this will be the third or fourth one (I'm losing track) that he's tried. The last one was Vesicare, first 2.5 mg. then 5 mg. and finally 10 mg. The 10 mg. seemed to help---sometimes, but in the past few weeks it was more and more ineffective. The urologist switched Bob to Enablex but that turned out to be time-released and could not be put into his feed tube. So now he's on something called Gelnique, which is a topical gel that's absorbed through the skin---and I am just praying this works.

Bob's main problem is that he feels a constant urge to pee. And I mean constant. All day long, it seems, he needs to pee and nine times out of ten, he can't go. The urodynamics test showed that his bladder floor was contracting instead of relaxing, then relaxing instead of contracting, so it's pretty much all screwed up. You can't believe how aggravating, time-consuming and not to mention uncomfortable (for Bob) this has been. He's even developed pressure sores you-know-where from using the urinal so much.

The first dose of Gelnique seemed to work like magic, he was able to pee just one hour later. Then the next day, we were back to square one. At the one week mark, he had one beautiful day, it was heaven, everytime he had to pee, he could! I was doing a happy dance all through the house (amazing, the things that get me excited these days) but then the next day, he once again cannot go.

Then, yesterday, while he was trying to urinate, his penis was singing. I kid you not. At least, that's what Bob said it was doing. Our conversation went something like this:

Bob: "It's singing." Motions to you-know-what.

Me: "You mean it's stinging?"

Him: "No. It's singing." He's quite adamant about this.

Me, thinking this is the aphasia talking, he means something else: "Tingling? Burning? Itching?"

Him: "No! IT'S SINGING!"

Me:  (thinking: It's certainly not singing, I mean, I can't hear anything.) "I think that's the wrong word, sweetheart. You don't mean singing, you mean something else. Try to find the right word."

Him, silent, trying to find the right word.

Me: visions of you-know-what with a microphone and miniature top hat, tap-dancing across the stage.....

Him, finally: "Boinking?"

Lordy lord. Sometimes, I tell you, it's darn hard to communicate. And I still don't know what he meant or if he really said "singing" or I just couldn't understand him. Though it is rather funny. Just praying this new medication kicks in soon. Our wedding anniversary (17 years!) is this coming Friday and I'd really like to take him out for a "date" without spending the whole time in the bathroom.....