On The Road With Bob

A couple of people have asked me, just this week, how on earth do I get Bob around? After all, he is 6'3", partially paralyzed, and I'm 5'4". So, I thought I'd detail what it takes to move him in this post. Before I do, please don't feel sorry for us. I knew what I was getting into when I took him home (against the doctors' advice) instead of sending him to a nursing home.

At the hospital, they used to move Bob using a machine called a Hoyer Lift. This device has a hydraulic arm that picks the patient up out of bed with a large sling, swings him around through the air and then deposits him in a chair. They wanted me to rent a Hoyer Lift for our home, but I nixed the idea for two reasons. Good grief, who has room for this huge contraption (it would take up most of the living room!) and second, I am a strong proponent of "tough love" and I figured that Bob needed to get moving on his own, and what better motivation than just to make him work for it and not have the convenience of a machine to do the work for him.

Our Ramp

I spent a lot of that last week at the hospital arguing against the Hoyer Lift. The therapists told me it would take three people to physically transfer Bob from bed to wheelchair, but I remained stubborn and asked to be shown how to use a slide board (also called a "transfer board"). Finally, they gave in and brought out a slide board and showed me how to use it. Bob and I tried it out, and I thought we did pretty well and I thought that was the end of the Hoyer Lift debate, however, the day before he was discharged, I got a call from a medical supply company telling me that they had an order from the hospital for a Hoyer Lift and when can they deliver it? (GAAA! I cancelled the order.)

Here's how we do it:  First, I roll the wheelchair next to the bed and park it at an angle. One wheelchair arm must be taken off, as well as the footrests. Then, Bob must pull himself forward to a sitting position and swing both legs over the side of the bed. He sometimes has difficulty swinging his legs, so I help him, but I let him get as far as he can on his own. Once up, he must scoot to the edge of the bed and get his feet firmly on the floor. Then, I position the slide board. The board is just that, a long board with tapered ends, slickly polished with varnish. One end of the board rests on the wheelchair seat and the other end is positioned under Bob's left thigh. The board then makes a little bridge between the bed and the wheelchair and Bob scoots along this bridge on his rear end and ultimately slides onto the wheelchair seat. He's got the scooting part down pat, almost goes too fast (freaks out the therapists) but he basically can do this part on his own and I'm only there to make sure he doesn't take a tumble. Once in the chair, the arm goes back on as well as the footrests and we are ready to roll! Out the back door and down our ramp, which is a bit of a carnival ride with all the twists and turns. Bob helps by grabbing onto the ramp rails as we go down.

Amazon Breakthrough Novel Award

The good news here is that my novel (Little Flowers) made it to the "second round" of the Amazon Breakthrough Novel Award contest. You might be wondering: what the heck is she talking about? I thought this blog was about Bob and his stroke... Well, excuse me while I digress for a minute...

Shortly after Bob came home from the hospital, I found out that the Amazon contest was open for entries again. This is a contest held every year by Amazon.com. So, I quickly (and I mean quickly) uploaded a manuscript, hashed together a "pitch", etc. and entered one of my novels. Most of you know that I have two books published (one nonfiction, the other a collection of short stories) but have been trying for years to publish a novel to no avail. (I've written eleven novels, no less.) Last year, I secured a wonderful agent, Melissa Sarver at The Elizabeth Kaplan Agency in New York. Melissa fell in love with Little Flowers and helped me edit it, then pitched it to about 30 publishers, all of whom nixed it--usually because the novel did not fall into a concrete "category" and editors thought it would be difficult to market. I found out that Melissa "gave up" on it shortly before Bob's stroke and since his stroke, I've really done zilch about my writing. I mean, I've got my hands full here.

CIDP Could it be--- Gone?

Bob and I went to see his Neurologist yesterday. This is the same neurologist he has been seeing for four years for his CIDP. CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy (yeah, I had never heard of it before, either, it's pretty rare).

Bob was diagnosed with CIDP in 2007. His first symptom was a sort of crick in his neck that would not go away. After months and months of various doctors, x-rays and MRI's, and misdiagnoses (one of which was torticollis, which he got treatments for, to no avail) and a trip to Gainesville to see a specialist, he was finally properly diagnosed. CIDP is an autoimmune disease. Basically, what happens is that one's own immune systems goes wacky (that's a technical term, ha) and begins to attack healthy cells. In the case of CIDP, the immune system attacks healthy nerves, literally stripping off the myelin outer sheath of the nerve (hence the term "demyelinating"), causing extreme pain and muscle weakness. Bob's CIDP started in his neck and progressed to his legs and ultimately began attacking his arms. It had gotten so bad that Bob could no longer work and, in 2008, he applied for and was granted Social Security Disability. CIDP can happen to anyone. It happens when the immune system becomes overwrought from fighting something (i.e. a prolonged illness or, in Bob's case, an allergy.) The culprit, in Bob's case, was a drug called Vytorin (a statin drug) prescribed for high cholesterol. Turned out, he was highly allergic to this drug. There is no cure for CIDP, however, there is treatment. One of which is IV-IG, in which healthy blood plasma from donors is transfused into his blood in order to boost his immune system. The other is a drug called Cell Cept, which is usually given to organ transplant patients, and calms the immune system down. Bob was on both of these before his surgery and subsequent stroke in October.

The Dreaded "Plateau"

Bob's Occupational Therapist has told us that he has "plateaued" and she will not see him anymore. I have been warned about this word, this "plateau", that we might hear it again and again. It means he has gone as far as he can, that he is no longer progressing, that he is---what? Toast? Lord, I hate this word, "plateau". It feels like giving up and I refuse to give up. The OT had been working on his right arm, which is still a dead thing, but....

To give up? So soon?

It seems there is a magic ruler out there. That if a stroke survivor doesn't reach Point A by X time, forget it. I really don't understand.... After all, I remember, in the hospital, when I asked the doctors what to expect, I was always told that "every stroke is different" and "every patient responds differently" but now, because Bob hasn't hit the "magic mark", let's just give up.

I am frustrated. Worn out and worried. This coming week, Bob's certification period is up for Home Health Care. I have no clue what to expect.

In the meantime, I will paste the electrodes on his right arm and run the TENS unit. I will massage his right arm with oil and do the exercises. And I will not give up. Plateau--be damned.

Spring Has Sprung

Well, it looks like spring is here. This week the weather has been perfect. Highs in the upper 70's and lows in the 60's. And our tabebuia tree is blooming.

I grew this baby from a pilfered seed pod a few years ago. It's now about 6 feet high!

3 Doctors = 3 Different Diagnoses

Since December, Bob has been complaining about mouth pain. He began complaining at the Acute Rehab Hospital and I asked for a doctor to look at his mouth. Nothing happened there. So, when he came home I asked the home care nurses to take a look. No one could see anything wrong with his mouth. I took him to his primary care doctor, who ordered x-rays and looked in his mouth and could see nothing wrong, so suspected it was "nerve damage" from the stroke. He prescribed Lidocaine ointment. Which didn't work. I took him to the Pain Management doctor, who looked in his mouth, and thought it might be an infection of some sort. He prescribed nerve block injections (which didn't work) and also to smear his gums with yogurt... This week, I took him to the Endocrinologist, who looked in his mouth and said it looked like Bob had Scurvy! (Ahoy, mate! Who'd of thought?) That doctor asked what type of feed is used in Bob's feeding tube, and then told me that these solutions are not all that great for nutrition. He believes that Bob has been suffering from a vitamin deficiency, and sent me to the pharmacy for multi-vitamins plus extra C and 1000 mg of Vitamin D. He also said I should shoot Orange Juice into Bob's feeding tube. This doctor was also appalled that the Rehab doctor had doubled Bob's steroids, saying to me "What is he trying to do? Kill him? He can get Cushing's Disease from this, and look at him, he doesn't look well." Boy, did I feel terrible. I mean, I've been giving him the prescribed dose and didn't even know it was dangerous.... Who can you believe? Or trust?

This week, Occupational Therapy dropped off the map, followed by Physical Therapy. (They are waiting for "approval" to continue from the insurance.) This caught me off guard, because I was told everything would continue until the 28th.  I did talk to that Social Worker, who is going to see if she can straighten things out and get Home Health Care approved for another 60 days. I pray she does. Meanwhile, I have become both the Occupational and Physical Therapist. No wonder I'm exhausted.....

On a good note, Bob has been able to bend his right knee a little more this week!

Scrabble As Therapy

Many of you know that Bob used to be a Scrabble Champ. Long before we met, he belonged to a Scrabble Club and used to attend events and tournaments. I remember the first time we played Scrabble. It was a cold winter night in Wisconsin and we had just begun dating when he showed up at my apartment door with his Scrabble game board tucked under his arm. "Do you want to play a game?" He had asked me. I think I laughed and replied that the only games I had played with men recently were "mind games". (I had been divorced for six years then, my dating life had been less than perfect, and I--a bit of a cynic....)

I hadn't played Scrabble since I was a kid, so of course Bob blew me off the board. And his board, my god, it was a high-falutin thing, with a swivel pedestal base and recessed tile markers. Bob bragged that he had only been beaten twice in his life. So the gauntlet was thrown--I figured two can play this game, quite literally. So, I studied his strategy and became quite good at it. So good, that after some time, I beat him! Ha! We have played Scrabble for years now, and are quite well matched, he and I both winning--50% of the time and always scoring in the upper 300's or 400's. We even have our own "romantic" version of the game (I'll leave the details of that up to your imagination....!)

So, it was with some trepidation that I took out the Scrabble board. I had been reading a book written by a man whose wife suffered from asphasia and he mentioned that Scrabble

Swallow Test Results & The Week in Review

On Thursday, Bob and I went to the hospital for a swallow video study. I had been praying that he would "pass" this test and be able to begin eating and drinking again. Right now, he has a "peg tube" which is a feeding tube surgically inserted into his stomach and nutrition is provided to him via tube feedings of a liquid called "Jevity". He gets three separate Jevity feedings each day, plus he is hooked to a pump at night for a continuous 12-hour feeding. He is "NPO" which means nothing by mouth, so he is not allowed to eat or drink, which I know is very frustrating for him. He is allowed to have a dental "toothette" sponge, that he can wet and moisten his mouth with, but that is all.

The results of swallow test were dismal. Unfortunately, it seems that anything he swallows is getting stuck in the pockets at the back of his throat, and from there slips into his lungs

Bob and Ripley (Pet Therapist)

Aphasia: the worst nightmare

I think the worst thing is the aphasia. I miss talking to Bob. We used to talk, all the time, everyday, but especially every night at "porch sitting time". Every night, like clockwork, we sat on the front porch and talked about the day, or about politics, or the news, or what was happening with my writing or gossip in the neighborhood....

All that is gone.

He can speak. Somewhat. I know it must be frustrating for him, as I think, he knows what he wants to say but can't find the words. Or his mind gets stuck on one word and he will keep saying it. I can see the frustration in his face. I can't imagine what it's like for him to go through this--it's got to be like your worst nightmare. Trying to speak and not being able to. Sometimes he just says, "words, words." Often, he says "my minds, my minds!" He has also said, "my mind is gone." Usually, he gives up and says "whatever."

He tends to pluralize words. For example, when he is happy, he says "happies".

He tends to speak mostly with one word and a lot of pantomiming, i.e. pointing, gesturing, etc. It's like a chronic game of charades.

Yesterday, for 30 minutes or so, he kept pointing to his feet saying "movies". It took 30 minutes to figure out what he wanted was a different pair of socks.

A lot of the speech therapy he gets is "name the object". So, I do this when we are alone. I walk around the room and pick up things, saying, "what's this?" I hold up a book, "what's this?" He says, "turtles?" "Book," I say and he repeats it. "Books. Books." We try again. "What's this?" I say, pointing to the lamp. He says, "books?" "Lamp," I say and he repeats this: "Lamps. Lamps." We continue like this for a while, me saying, "What's this?" Bob trying to find the right word. If the cat walks through the room, I snatch him up and say "What's this?" He laughs and says "Ripley!" He does know the cats' names. But everything else is difficult. Speech therapy is also about counting numbers and saying days of the week. He gets stuck after Monday and keeps saying "Friday".  He can count to five, but after that it's difficult.

They tell me it takes time. He has improved. For the first month after the stroke, he did not speak at all. Only made grunts and garbled sounds. For a long time, I thought I would never hear his beautiful familiar voice again.

The night after his surgery, he had called me from the hospital. I was already in bed (exhausted) so the answering machine picked up. It was about 9:00 p.m. I heard his voice on the machine saying "Hey Sweets, It's me." That was what he always said when he called me. I picked up the phone that night and we talked for about a half an hour. He asked me to bring his razor in the morning. He said he felt fine. Indeed, he sounded fine. The next morning, when I arrived at the hospital, I found him in his bed. He had had a stroke and no one seemed to notice it until I came in. (Still, that pisses me off. I mean, he was in ICU, for crying out loud.) Anyway, for that first month afterward, I would come home nightly from the hospital and replay that answering machine message. Bob's sweet voice saying, "Hey Sweets, It's me." Me--standing in the kitchen, crying.

His first clear word was said on November 20th. He said, "No."

His vocabulary is now quite improved. He can say, "Hey" "Hello" "How are you?"  "Whatever." "yes" and "no", "I remember" "Yuck!" "OK" "Hurts" "Merry Christmas and Happy New Year", and "Boomer, Shut up!" to name a few---(that last one, to the dog when he barks.) Occasionally, he comes out with a very clear statement, but this is still rare. At least, now, he usually gets my name right. For a long time, he called me "Brenda", I have no clue why.

Today, we worked on "slippers" and "socks". He counted "one, two, three, four, five, six, seven, eighteen, nine, twenty."

One day at a time. One word at a time.

This week will be busy. Two doctors appointments and Thursday, a swallow video test. I pray he passes that, at least to the point he can start eating or drinking a little bit. Wish us luck.

Bob & His New Wheels

The High Cost of Rehab

Bob's caseworker was here this past week. She told me that Bob's home care was approved through the end of February, and after that, she did not know, but did not think it would be approved. (Approval is via the Medicare insurance.) At that point, he will need to continue therapy in Outpatient Rehab with all three therapists (Speech, Physical and Occupational) and that he needs to see each of these therapists three times a week..... O-kay. I checked his benefits and find that each visit will cost us a $30.00/copay.

Yikes. That's $270/week.

I did ask that she refer me to a Social Worker at their agency. There is one hospital in town that is not-for-profit and I'm hoping they can help us out as they sometimes do "charitable write-offs". Otherwise, we'll never be able to afford this.

And I hate to think what will happen to him if we can't afford to continue his therapy.

A social worker is supposed to contact me. But my stomach is all in knots....

He's Come A Long Way, Baby

Sometimes, when progress seems so slow, I have to remind myself how far Bob's come since those early days after his stroke. I have to remind myself that three times I was told to prepare for "the worst" including the possibility of "having to pull the plug". I have to remember the horrible night I authorized a DNR (do not resuscitate) and all the days I sat by his bedside, reading aloud and talking to him, when he was unconscious and hooked to a breathing machine, and me there at his side, waiting (just waiting) for any sign from him. Originally, the CAT scan had shown that 2/3 of his brain was damaged, the damage had crossed the midline, the doctors told me that he would never breathe on his own, that he would be paralyzed from the neck down, he would not be able to think or speak and they did not know if all of his organs would function. I have to remember the day he pulled out his own breathing tube, it was my birthday, and he amazed all the doctors by breathing on his own. That later CAT scans showed the damage had shrunk, although still 80% of the left side of his brain, and the doctors said it was a miracle--I have to remind myself how much worse it could been and how blessed we are.

Right now, as I write this, he is with the Speech Therapist, who is showing him flash cards with pictures of everyday objects. It is frustrating to see him look at a picture of a toaster and call it "apples".  And to see him struggle swallowing just a little teaspoon of ice.

That's why I keep reminding myself. We are blessed.

It's Been A Month

Bob's been home a whole month now. He was discharged from Acute Rehab on New Years Eve. We've finally settled into a routine, but, by God, it hasn't been easy. There have been times when I've been ready to throw in the towel, believe me. Bob is still not able to walk. Has difficulty speaking. He's on a feeding tube and can't have anything by mouth because his swallow is too weak. No movement in his right arm, at all, but his his right leg is coming back slowly.

Our daily routine: Up at 6:30 (me), walk the dog. Back home, disconnect the 12-hour nightly feeding. Quick bath (me). 8:00 a.m. first medications for Bob (all his pills have to be crushed and dissolved in water before syringing them into his peg tube). 10-10:30, first of three "bolus" feedings, 11:00--bed bath, get Bob dressed for the day. 12:00 second dose medications. 2:00 p.m. second bolus feeding, 4:00 p.m. third medications, 6:00 p.m. third bolus feeding, 8:00 p.m. last medication dose and connect overnight 12-hour feeding. In between all of this, visits from therapists (he has three, Speech, Occupational and Physical) and if no therapists are due that day, I do the therapy with him. Meanwhile, get him up in the wheelchair, change sheets, do laundry, empty urinal, change diapers, put TENS unit on for his electrical stimulation on his right arm, work on reading and writing (we are up to One Fish, Two Fish, Red Fish, Blue Fish and he is learning again to sign his name and print some words) or on slow days, playing Scrabble.  At night, we watch a movie together on DVD's from the library. Then to bed around 9:30 and if I'm lucky, I won't be up three or four times with him.

Last night was a good one. I got to sleep until 5:00 a.m. A first!!

Today, the Physical Therapist is going to show me how to help him up to a standing position with the walker. He's been able to stand for 3 to 4 minutes. I've been to scared to attempt this on my own, afraid that he will fall and no one will be around to help me get him back up.

This is my first post here. I'm going to try to post regularly for those of you who would like to hear an update on Bob's progress. Time now for me to go and do his first feeding. Bye!