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Friday, March 30, 2012

Therapy: A Revolving Door

This week we had the "last" session of Physical Therapy, which made for a total of five sessions which means 15 left to use later this year. We are now armed with some new exercises, some of which are quite labor intensive (and I'm talking about for me!)

And I'm telling you, I am using muscles I didn't know I had. So Bob and I are both getting a workout.

In addition to our "hall dancing", I am manipulating his right leg, bending that troublesome knee in all sorts of ways and his leg is heavy. This is totally the opposite of what the Outpatient Rehab therapist had instructed us to do, which was to let Bob struggle on his own to bend that knee. The new therapist tells me that to let Bob struggle was fruitless, that instead, I should get in there and bend that sucker myself in order to "wake up" those muscles. So I am now kneeling on the bed while pushing his knee, this way and that, and instructing him to push back at me.

I must say this new technique is working. Bob is able to push harder and harder each day. He has also just begun to be able to slide his heel down the bed after I stand his knee up. In addition, he has just now begun to be able to squeeze his thighs together--though not all the way together, yet. And to keep his right knee up in the bent position--previously that leg would just flop to the right. So muscles, indeed, are waking up!

In addition to the knee/leg exercises, I am to get Bob sitting at the edge of the bed daily. I do wish someone had told me this simple exercise before, as we could have made much progress by now if they had. Alas, no therapist mentioned this. Seems that Bob's back and abdomen are very weak from always being supported by the back of wheelchair or the back of the bed. So now, we sit side-by-side on the edge of the bed, with my arm around his shoulders and we sway back and forth, shifting weight and moving those muscles. After that, I pull a chair up in front of him, take his hands in mine and pull him gently toward me and back, a sort of bending exercise. And in this short amount of time, Bob has gone from toppling over immediately to being able to keep himself erect at the edge of the bed for ten minutes. Though he is still a bit wobbly.

So PT discharged Bob, with the understanding that as soon as Bob masters these new exercises, we will be calling her back for more. Right on her heels, Speech Therapy showed up for the first evaluation visit.

The ST evaluation went smoothly enough, I guess. The new therapist watched Bob eat pudding, often placing her fingers on his throat to feel the movement. She asked me how the thickened liquids were going, but really, truthfully, I've only done it a few times because Bob would begin coughing and later, making gurgling noises which pretty much scared the heck out of me. So she is planning to work with the thickened liquids and she will also do e-stim for swallowing. The latter at my request, because, hey--can't hurt and maybe will still help at this late date. As for speech, she ran Bob through the typical questions, had him count to ten, had him point at things, try to name a few objects, and then this:

ST:  Bob, I am going to say a sentence and I want you to repeat it. OK?

Bob:  OK.

ST:  Good morning.

Bob:  Oh! Nice to meet you!

ST:  Bob, I am going to say a sentence and I want you to REPEAT it. OK?

Bob:  OK.

ST:  How are you?

Bob:  I'm fine, thank you!

So, speech therapy is off to a roaring start! We have our first session on Monday.

Wednesday, March 28, 2012


Here's another strange, surreal drawing by my formerly right-handed, now left-handed artist. This one he calls "Eye".  He told me that he thought this drawing was "trippy".

(click to enlarge)
All righty. I have no clue what this drawing means or what it is. Maybe someone out there can figure it out! Though it is extremely intricate and he spent a heck of a lot of time on it.... such details! And it certainly is "trippy".

Sunday, March 25, 2012

Slow Dancing in the Hall

One of the problems that Bob's experiencing is the inability to put weight on that right leg. Every time I have tried to get him to put some weight on that leg while standing at the rail in the hall, the result is that his knee buckles and he begins to slowly crumple toward the floor.

Last week, the therapist was trying to figure out a way for Bob to start putting some weight on his leg. It seems the typical exercise assigned at home is to have the person wheel up to the kitchen sink, pull themselves up by grasping onto the edge of the sink and stand there, sort of leaning forward, shifting weight from side to side.

She took one look at our kitchen sink and realized this is impossible.

One of the things Bob and I loved about the Pink House when we first saw it  (back then, it was "the white house on the corner") was its "old world charm". Walking into the house felt like walking back in time. Under layers of grim and dirt, all the woodwork, floors, windows, plumbing fixtures and kitchen cupboards were intact and dated from 1922. (The electrician would later call it "a god damn museum, not a house", as even the electrical wiring dated from 1922.) So our kitchen sink is an old wall hung, cast iron sink. Which basically means it has no cupboard supporting it underneath. And if 6'3", 190 lb. Bob tried to pull himself up on the sink--the result would most likely be that he would yank the sink right off the wall. Not a good thing.

So, the therapist decided we'd have to use the railing in the hall, but when she tried to get him to shift some weight to his right leg standing at the rail, she had the same result as me. Bob's knee buckles, he starts going down. She then tried placing the wheelchair at a right angle to the rail, so that he could lean forward toward the wall while doing this exercise, but unfortunately the hallway is too narrow.  After thinking about it, she devised a rather clever way to practice shifting Bob's weight. She called it "dancing". And this is how it's done:

Bob pulls himself up to a standing position at the rail, like he usually does for walking practice. His left hand is holding onto the rail. I stand on his right with my right foot in front his right foot (blocking it, so it doesn't slide). My left foot is positioned slightly behind the front wheel of the wheelchair which is behind us, in case he falls. My back is to the wall and I put my arms around Bob's waist, in a big bear hug. Then, I pull Bob toward me and we sort of sway back and forth, back and forth, shifting his weight from leg to leg. This way, I can keep him from falling down, by bracing myself against the wall if necessary.

The first time we did this, with the therapist watching, I couldn't believe how wonderful it felt just to hug Bob once again. I can't remember the last time that Bob and I stood next to each other and hugged each other. Let alone, actually danced. Of course, it isn't really dancing.

Although it does remind me of those couples on the dance floor, late at night, right before last call, when the band strikes up one last time and the lights go very low. It's usually some love song, you know the kind, such as that song that goes like this:

Only you can make the world seem right. 
Only you can make the darkness bright. 

And the dancers out there on the floor are sort of drunkenly holding each other up, feet barely moving, just sort of swaying back and forth, never really moving from one spot. While the band plays on:

Only you and you alone
can thrill me like you do.
You're my dream come true,
my one and only you.

And the nice thing about this exercise is that we can actually sneak in a kiss or two.

Thursday, March 22, 2012

Finally, I'm in Charge!

And I'm discharging PT next week. Yep. You read that right. I am discharging physical therapy next week. Me! I can't tell you how empowered that makes me feel! After all this time, and all those therapists who made me feel like a worthless piece of crap, all those discharges for "no functional improvement" and "poor prognosis" and "lack of progress", after all of that, I am finally in charge. BAH HA HA HA!!! Whoo! I feel good!

You're probably thinking I've gone completely off my rocker, bit the big one, gone off the deep end, etc. after all, wasn't it Diane who fought so long and hard for this therapy??? Um, let me explain what happened.

After that first (and quite confusing) PT session, Bob received an "Approval Notification" in the mail from the insurance company which informed us that Bob was approved for 20 units of Physical Therapy, plus 20 units of Speech Therapy, plus 20 units of Occupational Therapy!

I tell you, I was floored because the neuro doc did not request ST or OT. And I didn't think Bob had a chance in hell of getting any more of those therapies. But then, this "20 units" thing was confusing, as what is a unit of therapy?

The only experience I have had with this term "unit of therapy" was way back when Bob was in Acute Rehab and the doctor in charge there was determined to send Bob to a nursing home, so determined that nursing home representatives were starting to show up in Bob's room with their glossy brochures filled with photos of happy, smiling senior citizens and glowing reports about how great their facilities were. I remember one representative who handed me a brochure for a "skilled nursing rehabilitation facility" and I asked her how much "rehabilitation" do they actually do and she told me that, well, their patients get a maximum of 3 units of therapy every day. So I asked her what a unit of therapy was and she told me it was "15 minutes", at which point I thought, well, big whoop.

Anyway, so I was looking at the approval letter thinking a unit might not be a visit, but a time-frame, such as 15 minutes, but no matter how I figure out the math, it's not adding up. Because the admissions/PT evaluator had told us that Bob was approved for 6-8 weeks of therapy, twice a week. Like I said, it didn't add up at all.  So when the PT arrived the next day for her session, I showed her the letter and asked her what a unit was, but she had no clue.

So I called the insurance company, after the usual being transferred all around and on hold forever, I finally got through to the "approval office", who told me that a unit was a visit. And that Bob was approved for 20 home visits of each therapy and they could be used anytime up until Dec. 31. 2012.

The next thing I do is call the Home Health Care Agency and talk with the Therapy Team Leader and I tell her my idea, which is this: I want to spread these 20 units out over the entire year. That way, Bob can get off and on physical therapy all year long. I ask her if that's possible and she says, "Sure!" and tells me just to talk it over with the therapist.

So I run this by the PT at Bob's next session and she is totally on board with this idea. In fact, she thinks it's a great idea! She is going to teach me and Bob all the exercises that she can think of to increase his trunk control and weight bearing on his right leg and then discharge Bob next week. After which, Bob and I will work together on the new exercises (plus all the others) and when he has mastered the new exercises and gains more strength in his leg, I will ask the doctor for a new script and she will come back to progress us to the next level. And hopefully, we will have him up on the hemi-walker by the year's end!

How about them apples? I tell you, this is the best news we've had in a long time.

By the way, I really do like this new therapist, even though we got off to a sort of bad start. She is very enthusiastic and seems to know what she's doing. She told me that she really was impressed by Bob's progress and his motivation and willingness to work at it. That she has seen so many caregivers and patients who give up, especially in light of Bob's disabilities and the amount of time that has passed since the stroke. That she has never worked with a patient "in Bob's condition" who was not in a nursing home and she admires our fortitude and she also said that I was darn a good therapist. She's also going to report to the insurance company that our sessions were for "training the caregiver", that way, she says the insurance company won't think Bob's being discharged for "lack of progress". I do like this therapist and think I'll request her next time.

Oh, and she's put in a request to the neuro doctor to send a script for Speech Therapy so we can start that, hopefully, next week.

I am still not sure about OT. As I'm not sure what they can do for Bob at this late date, especially in light of the fact that he has no movement what-so-ever in that right arm. But we'll start with Speech and think about OT later.

Monday, March 19, 2012

A Special Visit for Bob

Aunt Mary, Bob & Uncle Dick
Bob's Aunt Mary and Uncle Dick spend a couple months in Orlando, Florida each winter and managed to drive over to see Bob and me three times while they were there.

This photo taken yesterday. They are on their way back home this week.

Last year they weren't able to make their yearly Florida sojourn due to some medical issues of their own. So we both were delighted to see them!

Bob was especially thrilled! This was the first visit from his side of the family since he was hospitalized.

Uncle Dick tests Bob's pushing strength.
Bob got to show off his walking skills at the railing the hall. And demonstrate his other exercises for them.

Dick even tried his hand at a little PT.

Other good news: This past week, Bob suddenly is able to push with his right leg. As if those muscles have come alive!

The first few times I tried to get Bob to push back at me, while I pushed his leg forward, he couldn't do it at all. I could feel no resistance, none, na da. Then, on Friday, I felt a bit of resistance, a little push. And on Saturday, he pushed me so hard I practically fell backward!!! Afterward, my shoulder hurt like heck. Now, we need to work on not just pushing his leg down, but pulling it back up.

Saturday, March 17, 2012

Dante & the 2nd PT Session

Dante, 1880's edition
Well, folks, call the Pope! We've had a bona fide miracle here at the Pink House because at Bob's second PT session, the therapist discovered that Bob can actually move his leg! Whoo hoo! And just think, it only took one session of therapy for this miracle to happen!

OK, I'm being sarcastic. But man, that therapist had me so freaked out after that first session (I mean, really freaked out--oh-my-god he's-worse-than-I-thought, he'll-never-walk-- kind of freaked out) and then, lo and behold, she decides she was wrong. That the movement is not just in his hip flexor, but he also is moving the muscles in his thigh and ankle. The knee, now, seems to be a big problem area.

I, for one, agree with that. He has a terrible time bending the knee.

The second problem area is his "trunk control". The third is weight bearing on the right leg.

So at least we've identified some problems and we now have a couple of new exercises to address these problem areas. One of which is to have him sit at the edge of the bed, with me sitting next to him, arm around his shoulder, and kind of swaying/rocking back and forth. Another is (while Bob is lying flat) for me to actually push his leg and bend his knee up all the way to his chest and to have him try to push back. The first one is rather sort of fun, sort of like "seat dancing". The second is damn hard work for me, his leg is heavy.

But this second session went much better than the first.

The other day, I was dusting off the cabinet by Bob's bedside on top of which I have several old books displayed. I set the books down on the edge of the bed and heard Bob say one word, "Dante!"

This made my heart swell with joy.

You see, I am a long-time lover/collector of antique books, especially nineteenth century poetry books. Like any collector, I have a "wish list" of books I'd like to add to my collection. A long time ago, when Bob and I were first dating, I told Bob the story of The Dante that I didn't buy. I was in Concord, Mass. on vacation, with only a little money, and I ran into a gorgeous edition of Dante from the 1880's. I nearly bought it, but I didn't. I bought instead an 1836 volume of British poets, a beautiful two volume set, but I didn't have the extra money for the Dante. I bought the 1836 book because it was older and more "rare" and I figured I would find another copy of Dante somewhere down the line. But I never did find one, at least not in my price range. And I always regretted not buying that book.

Years later, Bob and I were out haunting antique shops, as we were like to do on our days off work, and he came up to me with his sly grin and whispered that he had found The Dante! I followed him, like an eager child, to the back of the store. And there it was, nearly the exact copy I had left behind years ago. It was priced at $20.00, a steal. I was ready to buy it immediately, but Bob took the book up to the cash register and, to my absolute horror, offered $12.00 for it. The shopkeeper countered with $15.00,

Well, just to hear Bob say "Dante" the other day. And not just the word, but the way he said it: Dante! So that I know he remembers that book and the story behind it. This, from the guy who still calls his leg an 'arm' and can't identify so many other objects....

It's times like this, I really do think he is coming back to me.

And I do hate to burst the story bubble here and tell you, truthfully, that the books I laid on the edge of the bed were Byron and Burns, not Dante... but heck, close enough. These days, I take what I can get!

Thursday, March 15, 2012

First PT Session Has Left Me Confused

And feeling like we've been doing everything wrong.

Confused because when the PT evaluator came over, he said he was amazed at Bob's ability to move his right leg. And now the PT who is actually scheduled to work with Bob, a female therapist, tells me that Bob is not moving his leg at all, except for his "hip flexor".  She says that basically Bob's leg is "frozen" except for the hip flexor and all the movement is coming from the hip.

I'm thinking if this were the case, wouldn't Bob be swinging his leg out, stiffly, like a zombie? He doesn't do that. At least, I don't think so. But who am I? Certainly not a licensed/trained therapist.

The Outpatient Rehab therapist told me, on Bob's discharge, that the "best practice exercise for walking is walking". Hence, I had the railing installed in the hall to practice walking on.

This new therapist tells me that Bob could walk that rail for the next ten years and never see any improvement.

I feel like we've been doing everything wrong. I don't know which therapist to believe anymore.

Tuesday, March 13, 2012

A Bit of Respite---Then Back Into the Fray

I should have taken a picture and actually, I did have my camera in my purse, but I had such a good time I forgot about it! So, a word picture will have to suffice: Imagine this--

The three of us, Jenn, her hubby and me, on top the fifth floor balcony, overlooking the bright blue waters of the bay. Jenn's got her feet up, her long hair blowing in the salty breeze. Seagulls dodge between the tables, squawking and looking for a wayward french fry. It's sunny, 80 degrees or so. Beach music plays in the background. The waiters wear Hawaiian shirts. We sip our fruit loaded drinks and munch our meal (bacon cheeseburger for me, when was the last time I had one??!) and we talk and talk about, gosh, normal adult things! Like politics and evil insurance companies and the gravy sucking pharmaceutical corporations. And we laugh and laugh and laugh and watch the dolphin cruise boats come in and go back out and the pelicans cruise through the air... aaah... 

And times flies. Before I know it, I look my watch and oh crap, we got to fly because we are going to be late getting back.

Once home, ten minutes late, I relieve a very agitated caregiver, who practically flees through the door, but not before telling me that Bob had spent the whole three hours trying pee, without luck. And he's still trying to pee. aargh!

So Jenn and her husband retreat to the front porch while I try to coax Bob into giving up the urinal so that he can have some visitors. Finally, he does. And we have a nice hour long chat at Bob's bedside.

As soon as they leave, Bob is once again trying to pee. This is beginning to concern me. Because it's taking much too long. I'm starting to wonder if I need to haul him off to the ER for an emergency catheterization.

A bit later, Bob gets very agitated and indicates to me that he's had a bowel movement, but when I check out his pants there's nothing there. But he is insistent and on closer inspection I find a rock hard stool sort of lodged half-in and halfway out. So I run to get my latex gloves and find they are gone. Gone!

There wasn't much left in the box, only a couple pairs, but now the box of gloves is empty. I can't believe the caregiver took these and used them for what? If Bob didn't pee? And you'd think for $22/hour these caregivers would arrive with their own gloves if they didn't want to touch a client... But I manage to locate a pair in our travel case and so I can do "the dirty deed", pluck out the offending stool. Which isn't much, so I figure Bob needs a laxative and a laxative will probably cause his bladder to relax and yes, later on, we have the usual explosion from both ends and so I am up at 2:00 a.m. with urine soaked sheets and a dirty diaper.

Finally, I am back in bed and I just begin to doze off when Boomer starts that whistle-whine with his nose and wakes me up. I'm thinking, is it morning already? But I look at the clock and it's only 3:15 a.m. I tell Boomer to leave me alone, but he's not giving up. So it's evidently an emergency and the last thing I need is a pile of dog poop to deal with on top of everything else.

So I drag myself up and Boomer dashes to the door and I think, it is an emergency. So I slip on shoes and still wearing my pajamas head out the door because it's 3:00 a.m. and no one will be around to see this spectacle, right?

Wrong. The minute we are out there, some dude comes walking down the street. Me? I'm trying to look nonchalant in my PJ's, street shoes, hair a mess, with a large dog doing a rather elaborate poop dance ritual in the grass... Finally, the guy disappears around the corner, but lo and behold, here comes another person. What's with these people prowling around in the wee hours of the morning?

Back in the house, back in bed, Boomer settles down and I can't sleep. Finally, after tossing and turning for awhile, I doze off only to be awaken by Bob's plaintive "help! help!" and I look at the clock. It's now 4:30 a.m. I'm thinking, I'll get up in just a minute. But the next thing I know, the light is shining through the window and I've overslept and probably abandoned Bob in a puddle of something. So I leap out of bed, but he's fast asleep--in a wet diaper.

And thus begins another day.

Sunday, March 11, 2012

Physical Therapy Approved!

I am happy to report that the insurance company has approved Bob for 6-8 weeks of physical therapy at home. We had his "evaluation" today (yes, on a Sunday) and will be receiving two visits per week for the next six weeks for sure with the possibility of adding an additional two weeks after that.

So I am happy. Real happy. But I am also rather pissed....

Because why the heck did Bob's primary care doctor tell me that the insurance would not pay for any more therapy and refuse to order it? And why the heck did the therapist at Outpatient Rehab tell me that Bob could not get any more therapy until he could stand up without the assistance of the parallel bar?

What the hell is wrong with these people??!!!!!

Well, I'm glad I didn't give up asking for therapy and I went over the primary doctor's head and asked Bob's neurologist about it, as it was the neuro doc who ordered it.

The therapist today watched Bob walk at the rail and was amazed at Bob's ability to move his right leg. He agreed with me that Bob needs to get more trunk strength and also more weight bearing strength on his right leg. He has some ideas on how to do this and it looks like we'll have our work cut out for us in the coming weeks!

Tomorrow though, it's margarita time for me!

Friday, March 9, 2012

CerAxon Update

Bob has just completed three weeks of taking CerAxon, the citicoline medical food product. He takes 1000 mg in the morning and another 1000 mg at night. I have been watching him closely to see if there are any improvements, especially cognitively as most studies I have read on citicoline result in overall cognitive improvements of the participants, be they rats or people.

I have not seen much until this past week.

On Sunday, Bob was suddenly surged with energy and walked the rail in the hall 27 times. This up from his usual 20 times. On Monday, he did 28! I was ecstatic about this sudden jump in his stamina, but unfortunately on Tuesday, his ability dropped back to the usual 20 times. Yesterday, he was plagued with the usual peeing problems and dropped down to 15 times. We'll try again today and see where he's at.

But I think, the most promising thing, so far, has been a few sudden spurts of "old Bob" appearing, rather out of nowhere. I'm talking here about his speaking ability. This has been nowhere near consistent, but occasionally he has come up with a statement that sounds so like he used to sound, for example, last night, we were watching a science fiction movie and Bob turned to me and said, "This movie is really weird." And gosh, he sounded like his old self. This morning, he woke me up early, telling me, "I'm freezing!" In the past, if he got cold, he would shout only the word "cold" to me, or just "brrr". But this morning it was "I'm freezing" and again, he sounded so much like his old self. And the other day, he called me "Diane" three times. Three times! (Usually he addresses me as "hey" or "hey, um..." to the point I am beginning to think that my name is "hey, um...")

Unfortunately, however, these are just little "spurts" and after the spurt, it's back to his usual garbled, mumbling self...

Anway, that's what I've noticed so far. The dosage for CerAxon is six weeks, so he is half-way through at this point. We'll see what happens.

Other good news, the increased Lyrica has really seemed to help his arm pain. So knock on wood, that this continues.

And next week, my friend Jenn and her husband are coming to visit for a day. I need a break and already got someone lined up to watch Bob. And I am thinking a margarita and a burger, downtown on a balcony looking out over the bay sounds mighty fine right about now....

Wednesday, March 7, 2012

Last Fire of the Season

Bob and I have always looked forward to our mild winters here in Florida. We heat the Pink House with wood, and though it's a lot of work--stacking and hauling--it certainly makes the house cozy.

The other night, I lit what will probably be the last fire this season.

When Bob came home from the hospital, I had them set his hospital bed up in the living room in front of the fireplace. At night, I pull the couch closer to his bed, so that we can hold hands in front of the fire.

This is the sweetest part of the day. All of us, Bob and me, Boomer, Ripley and Zenith cozied up by the fire.

View from Bob's bed at night.

Yesterday, we went to see Bob's neurologist, who, thankfully, upped his Lyrica dose and said if that did not help the arm pain, he would give Bob Botox injections.

I called pain management today and cancelled those pricey neck injections that they had scheduled.

Bob's neurologist is also ordering at-home PT!!! (Bob's primary doctor would not order it.) Let's hope the insurance agrees to it.

Thank you to everyone who left comments regarding ways to get Bob up on the walker. I have tried them all, without luck. Also have tried some abdomen exercises and he is quite weak in that area. It would certainly be good to have a professional for guidance on this.

Ripley at the fireside: one contented cat.

Sunday, March 4, 2012

Painful Issues

These past two months, Bob has developed pain in his right (affected) arm. The pain seems to be concentrated both above and below his elbow. At first, I thought this might be a good sign since previously he has had no feeling whatsoever in that arm, and I was rather hoping this was a signal that his arm was coming back to life, so to speak. However, that has not happened.

The pain is worse in the mornings, so bad it often leaves Bob cradling that arm like a baby and crying like one too.

I talked to his pain management doctor who gave me Lidoderm patches to apply to the site, but these don't seem to be helping. So I called her and asked if we could increase the dosage of his Lyrica, a medication specifically for neuropathic pain, but she decided she wants to do steroid injections in his neck, instead, as she believes the pain is radiating from his neck. And if that didn't work, we could try upping the Lyrica.

These injections are costly. About 75 bucks a pop. And he would need three of them or more.

I tell you, sometimes these doctors just like to bleed a person dry.

I then talked with Bob's primary care doctor, who said he did not believe the pain was radiating from Bob's neck but instead was stroke/neuropathic related.... This week Bob has an appointment with his neurologist, so I will ask him for his opinion. Seems all we have been doing lately is seeing doctors...and at $40.00/each plus wheelchair transport--it is stressful.

On top of that, Bob's mouth pain has returned again. You may remember the "mystery mouth pain" episode last year about this time. We went to every single doctor, even had PET and CAT scans done and no one could figure out what was causing that pain, then it mysteriously disappeared. And now it's back. The primary doc thinks it's caused by the radiation therapy which Bob had in 2001, and he thinks it will be something that will come and go for the rest of Bob's life. Last year, Dr. Doom thought the same thing and prescribed hyperbaric treatment, which I was excited about thinking it could help Bob with so many stroke-related problems on top of the mouth pain--but the Hyperbaric doctor shot that idea down, saying she didn't believe the pain was caused by this... So we are back to swabbing Bob's mouth with Lidocaine.

Bob has not been a happy camper lately. And when he's not happy, I'm not happy.

The other night, Bob was in tears again because of the pain. I tell you, it makes me feel so helpless when I can't help him. I sat down next to his bed and started crying with him. What a sight we must've been. Bob noticed I was crying, he grabbed my hand and asked, "What's wrong?"

I told him I just felt so helpless, and that I didn't know what to do. And that it's been an awful year and I didn't know how much more I could take, and it was so hard trying to do everything by myself with no help. And I just wanted our old life back. I just wanted my husband back. And on and on.

And he squeezed my hand, hard. And he said, very slowly but very clearly, " to you. Because...I love you...very...much."

And I have to believe him. And keep his message close to my heart.