Shut Down

We are surrounded by foreclosures. The house behind The Pink House sits abandoned, its stucco face cracked with age lines, its wooden front steps broken and leading to a drooping porch on which a bloated and long ago delivered telephone book lies. On the other side of us is an empty duplex, its aluminum eaves, pealed back like a sardine can, clank when the wind rises. Next to that, the melted facade of a long forgotten house, its vinyl siding liquified in a fire set by vandals, window glass all broken out.  Across the street, a For Sale sign has sprouted in the lawn and next door to that another foreclosure, though that neighbor is hanging in there until, she says, they drag her out kicking and screaming.

A few years ago, during the big real estate boom, we were the next "up and coming" neighborhood. Ripe for revitalization, conveniently located with many fine historic bungalows ready to restore....

And now, it seems like this neighborhood has shut down.

These past few days, our DIY rehab center at The Pink House has been shut down, too. Because I've been ill. Me. The strong one. The one whose always healthy as a horse. Lately, it takes everything out of me just to get Bob's bedbath, meds, tube feedings done and then, I am down for the count. Crashed on the couch. Feeling as dismal and miserable as this neighborhood. And guilty as all get-out....

Which brings up another dilemma, the first time we are dealing with this, which is: Who takes care of the caregiver when the caregiver needs care?

Go Fish

Toward the end of Bob's Speech Therapy, when it became apparent to me that the therapist was giving up, I began to hunt around for new and different speech therapy techniques. Unfortunately, there's not much free information out there. I did run across the mention of "Constraint Induced Therapy" for aphasia, but that invariably led to me a website to "buy our computer program" or "enroll in our clinic", both of those options being too expensive for us. I had heard of Constraint Induced Therapy for arm/hand paralysis, and that the therapy involves securing or tying back the unaffected arm/hand so that the participant is then forced to use the affected arm/hand instead. But how is this done with aphasia? When there's nothing to tie back or secure???

I continued searching for this therapy and finally landed on the results from a research study group for Constraint Induced Aphasia Therapy. In that study, the participants played the card game "Go Fish" and as they played this game, gestures such as pointing, etc., were "outlawed" and the participants were thus "forced" to speak. And I thought, well, Bob and I can do that. We can play "Go Fish."

But alas, I had never played Go Fish before--did I have a deprived childhood, or what? ha! I managed to find a deck of Go Fish cards at the pharmacy for $2.50 and snatched it up. Fortunately, it had directions.

We've been playing Go Fish since about May, when the Speech Therapist was giving up on Bob and she was starting to "teach" him gestures (which was idiotic, I mean, he's aphasic not retarded) and wanted me to put together that Clip Art Notebook so that Bob could point to pictures instead of saying words (I hate to say, but I never did do that. It just didn't seem the right thing to do.)

In case you (like me) never played Go Fish or have forgotten how it's done, the game is pretty simple. The deck I bought is geared for children, so it has pictures of animals on it. Each player gets dealt five cards and the rest of cards are put in the "Go Fish" pile. Then we turns, asking each other, for example, "Do you have an elephant?" And if the other player has an elephant, they must give it up. If they don't have an elephant, the other player tells you to "go fish" which means take a card for the pile. The object of the game is get as many matching pairs as possible. The one with the most pairs wins.

While we play Go Fish, I really force Bob to speak, to say the phrase "do you have a...?" He does have a big problem with names of things, so I show him my card while asking him, otherwise if I just asked him for an elephant, he'd probably hand me a Lion card, instead. So I let him see the card, so that he can make the connection. When it's his turn, I give him time to try to figure out the name of the animal, only helping when he gets really stuck, and then usually if I give him the first sound in the word (example: "el" for "elephant") he can figure it out.

So where is all this leading? Yesterday, when we played Go Fish, Bob really shocked me. Usually when we play, and it's my turn and I ask him for a card and he doesn't have it, he says "no" and I have to coax him into saying "go fish". Yesterday, he responded "No, I do not. Go Fish!" And he did this pretty much consistently throughout our game.

"No, I do not. Go Fish!"

Oh, I do hate to sound like a broken record, but every time he comes up with a complete sentence and/or new words, I am just leaping for joy!  So forgive me.

Also, yesterday, Bob hit a new record on the rail: 26 times. But, more exciting for me was that afterwards, he said, "Geez. I'm worn out."

And to think Bob is having this "breakthrough" now, just one week shy of his one year stroke anniversary. And to think, Speech Therapy gave up on him back in June.

Timelines & Predictions

Bob's one year stroke anniversary will be on Oct. 22nd. This impending date has had me, I'll admit, a bit freaked out because of all the talk about "the first year" post-stroke and recovery being difficult if not impossible after that. In some ways it doesn't seem like a year has already passed. In other ways, it seems much longer than that--a lifetime maybe. I don't think I was prepared, back then, for what a long process this recovery would be and still is.

I remember one of the first "predictions" about Bob's recovery came from one of the doctors in ICU who told me, in November, that Bob would be "home, walking and talking and eating, by Christmas."

I actually believed that guy and he was wrong, on all points.

Then, another doctor in December told me "don't get your hopes up" as "he will never walk again."

We are still proving that doctor wrong.

And the doctor in charge at the Acute Rehab Hospital, who told me that Bob would never come home and would have to, sadly, spend "the rest of his life" in a nursing home. Wrong, wrong, wrong again.

And countless therapists, who told me that Bob had had too many "set backs" and got started on rehab too late, because, you know, after that "window" which is the first "three months" or "six months" or "one year" (depending on who was talking at the time) the prognosis is very poor and recovery is unlikely....

Recently, I was browsing an aphasia/stroke website and I ran across a discussion board and was horrified to find that many people on that website were under the impression that if you haven't recovered from aphasia in 2-3 months, you will never recover or improve.... I am glad no told me that.

Because Bob has had, I believe, the greatest overall improvement in his speaking, just this last month. He has said so many complete sentences that, geez, I've lost count.

Also, this week, Bob hit a new record on the rail, 25 times: that's approximately 150 feet that he is walking almost everyday. At Outpatient Rehab he was lucky to do 50 feet, three times a week, on the parallel bars. So much for "hitting the wall"--eh?

Which makes me wonder, why do these doctors and therapists and experts always make predictions? Why are all these timelines handed out as though they are "set in stone"? Because it seems to me that it only discourages people.

So, today, I'm making a vow to myself to no longer get freaked out about timelines. So what if his stroke anniversary is coming up? We still have time and determination to improve.

CIDP Still "Quiet" & Other Neuro News

I took Bob back for his follow-up with his neurologist last week and the doc thought Bob was doing quite well, all things considering. Bob's affected (right) hand is gaining spasticity which means it is progressing somewhat, so not all hope is lost for that. He was worried a bit that Bob was clenching his hand to tight and talked about getting a splint, but really that's up in the air. I'm to keep an eye on it. He also tested Bob's vision, but, unfortunately, there is no improvement there. I think, we were all (doctors and I) hoping that some of his vision would come back, but Bob still is totally blind in the left eye and has no peripheral vision in the right one. And that is sad.

The doctor also informed me that Bob would have to stay on blood thinners (Warfarin) for the rest of his life because his "genetically unnaturally thick blood" could cause another stroke. And also he will have to have a once month blood test for the rest of his life to monitor his blood thickness. But that's something we can manage.

The doc then tested Bob for CIDP and he could find no trace of that disease, he said the CIDP was "quiet" and thank goodness for that. I was beginning to worry as Bob seems to be having more trouble holding his head up lately, but the doctor assured me it was just muscle atrophy from the CIDP and not the CIDP returning. And that is such a blessing.

An interesting aside, Chris' brother suffered a left hemisphere stroke about three months ago (he's doing quite well now, just some right hand coordination problems) but he also previously suffered from diabetic neuropathy and since his stroke, his neuropathy has also completely disappeared. Makes me wonder if anyone's done any research on this phenomenon... i.e.: stroke cures neuropathy??

Terms of Endearment

Since the stroke, Bob has not been able to remember my name. I'm talking not so much about my actual proper name (though that, too, is a problem) but my "pet name". Like many couples, before the stroke, Bob and I did not walk around the house addressing each other by our proper names. We had pet names. Mine for him was "Dar" which is short for darling, but also means "gift" in Polish. Or I called him "Bucky", don't ask me why. He always called me "Sweetheart" or "Sweets" for short. I know it's rather sappy, but I certainly have missed that.

Back in January, when he first came home, he kept calling me "Brenda".

(Which really brings to mind one simple question, which is: Just who the hell is Brenda??)

After he got over the "Brenda stage," he stopped addressing me completely and when he wanted me, I became just "hey" or "yoo hoo" or occasionally "hey you".  Not very romantic, that.

So you can imagine my joy when, just yesterday, Bob turned to look at me and grabbed my hand and said, "Sweetheart."

Just that one word.

And I am elated! I mean, I'm like a 13-year-old with a crush on a boy who just smiled at her. I want to do cartwheels through the house!!---but I won't because I'd probably just break my neck.

But such joy, such simple joy, just to be a "sweetheart" again.

End of a Long Strange Summer

A "cold front" moved into Florida yesterday, and I put quotes around "cold front" because you folks up north will laugh when I tell you that means our temperatures dipped to a frigid 69 degrees at night and cooled down to 85 degrees during the day. But what a pleasant relief from the constant 93+ degrees that has been droning on all through this summer.

It has been a longest, strangest summer. Bob and I have been pretty isolated here at the Pink House. Window shades drawn (for energy efficiency), air conditioner humming in the background. Every day a repeat of the day before: laundry, bed bath, tube feedings, therapy in the afternoon, diaper changes, bladder issues....

Yesterday, I flung the windows wide open and aired out the house. This made the cats quite happy. This morning, I got out in the yard to do some much needed yard work.

Yesterday, too, Chris moved out. The neighborhood seems strange and lonely without her.

"Not Simon"

Last week, I found a home for a stray/lost cat who had been hiding under our wheelchair ramp during the day and snoozing on our front porch at night for about 3 weeks. I had called an ad for a lost cat that sounded much like this one, and when they came to look at him, it was "not Simon" (their cat) but they actually fell a little in love with him and asked if they could take him home. I said yes, of course, because he would be so much better off in a good home then hanging out under the wheelchair ramp. And I really I don't have money to support and care for another cat. (Although I was already feeding him, I've always been a sucker for a stray....) And now, I rather miss that kitty.  I still find myself looking for him each time I go outside. Seems like my heart has broken more than once this past week.

Last I heard from the people who took "Not Simon", they had taken him a vet, checked for a microchip (found none), given him blood tests for Feline Leukemia and other things (all negative), got all of his shots, had him dewormed and now he is living in a climate controlled condo in Innsbruck with a female friend of their's who is an Occupational Therapist. Weird, huh? So, I do know he is better off.... but still, I miss him.

Also, this past week Bob hit another new record walking on the rail: 23 times. Although yesterday, he could only manage 18 times. When he indicated he couldn't do anymore, he looked up at me and asked: "Are you mad at me?" Of course, I wasn't "mad" just a bit disappointed and concerned as his right knee was buckling and it hasn't done that for a long time. But, hey, that was another complete sentence coming out of his mouth.