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Sunday, April 29, 2012

Facet Injections & Warfarin

I tell you, sometimes I think doctors are more interested in covering their own asses than in their patients' welfare. Bob had been scheduled for facet injections for pain in his neck on Friday, but the procedure was cancelled because I did not take him off his Warfarin (blood thinner).

A facet injection is a procedure where a needle is inserted directly into the spinal cord and, through the needle, a medication is administered into the "facet" region of the spine. Bob had had this procedure done on his neck pre-stroke and it always greatly relieved his pain. This is why I wanted the procedure done. In the past, when Bob had the treatment, he was always told to go off the Warfarin for 5 days prior the treatment.

I had talked to the physician's assistant about this when the facet treatment was suggested for Bob's neck pain and explained to her that since his last facet treatment, Bob has been diagnosed with an 90% occluded right side carotid artery and he also has hypercoagulation problems (i.e. genetically thick blood which clots easily) and, because of this, I did not want to take him off the blood thinner.

He has not been off the blood thinner since the stroke and the last time he was off the blood thinner, he had the stroke. The time prior to that when Bob had been taken off the blood thinner, he suffered several TIA's. I told her it was risky to take Bob off the blood thinner and I was uncomfortable with that risk. She agreed I could keep him on the blood thinner as the facet injection is just a procedure done with a needle and does not normally cause much bleeding. So all was set, until the 11th hour, when we receive call saying that the doctor will not perform the procedure unless Bob is off the blood thinner. That to preform the procedure while on a blood thinner would be "too risky".

So I called the doctor's office back and explained to the medical assistant who answered the phone what I had already explained to physician's assistant previously and she took a message for the doctor. Later, she called me back and said the doctor still wanted Bob off the Warfarin for five days prior to the procedure and would next Friday be good time for us to reschedule?

Sometimes, I swear, these doctors are trying to kill my husband!

Of course, I didn't reschedule.

Later, the same medical assistant called back and said the doctor had agreed to do the procedure without taking Bob off the blood thinner if I got a written note from Bob's neurologist concerning this.

We see the neuro doc this week, so I will ask his opinion. I'm beginning to wonder if we should do the procedure at all, after all of this and the initial warning that the anesthesia might be risky with Bob's swallowing problems....

But then, what to do about Bob's neck pain?

There's certainly been a lot on my mind lately...

Meanwhile, The Green Machine is still laid up. It's going on 4 weeks now.  aargh!  Lest anyone think Bubba is dragging his heels, he has had to weld, machine tool and basically "recondition" several parts as you can no longer buy them, such as this timing mechanism case:


And he works a regular job and is doing this stuff on the side in his back yard for me....

And, God love him, he's "donating" his labor.... all I will have to pay for is parts.

So I continue to wait... and wait... and wait....

But can you believe I was actually driving this car?? ha!

Wednesday, April 25, 2012

ST Bails Out

Yesterday, Speech Therapy discharged Bob. I knew this was coming, so it wasn't a surprise, and I suppose I could've stopped it, begged for more sessions, but really, I am to the point of throwing my hands up in frustration about the whole Speech Therapy thing. And, on top of it, Bob didn't really care for this ST, he said she's (and I quote) "weird."

What's it take to find a good ST these days? Seems Bob has had a run of 6 bad ones in a row. Is there even such a thing as a "good ST"? (By that, I mean someone who can actually help him speak properly again?) Or is it just the same old, same old stuff over and over? I tell you, if I hear those stupid, standard ST questions again, I'm going to flip my lid. I'm talking about these:

What do you do with a comb?
What do you do with a spoon?
What do you do with a pillow?

To which Bob always answers in gestures, i.e. makes the motion of combing his hair, etc. and the ST oohs and aahs because by golly, Bob understands the questions! Whoo hoo.

Blah. I tell you, I'm sick of it. Every single ST has asked Bob these same exact questions. They must teach it in Speech Therapy 101.

This ST said she was going to work on MIT, Melodic Intonation Therapy, but what she did was print off a copy of an article about the therapy and hand it to me. ha! So I asked her to please demonstrate, which she did, exactly one time. And then she went back into her bag of tricks and pulled out:

What do you do with a fork?
What do you do with a banana?
What do you do with a broom?

Well, I'd like to tell her what she can do with that broom...

So, off she went yesterday, more than likely to her other patients where she will ask the same silly questions over and over. To that I say, goodbye and good riddance. Because Bob doesn't need that kind of therapy.

I suppose I shouldn't be so totally down on her as she did teach me two little tricks. One of which is to touch Bob physically when he perseverates, which does seem to "unstick" his brain. The other is projection, by which I mean Bob projecting his voice, which does make him easier to understand. So, six sessions, two tips. End of story.

I guess I'm still not in a great mood because --

The Green Machine
 Yes, she's still in the shop. Bubba e-mailed me this picture, in case I was lonely....

Saturday, April 21, 2012

A Lesson Learned

Those of you who follow this blog know that I am not immune to the occasional pity party. So I guess these past couple of weeks should be a lesson to me... because when you think you've got it hard, just let it get a little worse--so you know how good you had it.

I tell you, being car-less sucks. There's no other way to say it. And it's been over 2 weeks and The Green Machine is still at Bubba's garage. The Dodge Charger radiator arrived but could not be reconfigured to fit and so a new hunt went on for another radiator and Bubba managed to track one down in California. So we're waiting for that to arrive. Meanwhile, Bubba had to take out the engine because when he tried to put the new water pump in, the timing cover (?) shattered and now that has to be replaced. When he took out the engine he found the freeze plugs were disintegrating, so those have to be replaced. Also something in the ignition needs a new part along with new belts, a new timing chain, new oil pan and on and on. And there goes my little emergency "nest egg" for what it was worth.

But I'll count blessings, because at least I have a car! And it's coming home, one of these days. How I long to see that somewhat shabby chic, rusted hunk of retro green metal with the powerful engine dripping oil on the driveway again! I love you, Green Machine (even if your speedometer/gas gauge/air conditioning doesn't work--at least the radio does)! Come home soon!!

Honestly, I don't know how people do it. I see them, daily, walking past the Pink House, going on their beer/cigs/milk/bread runs to the corner convenience store. We live in what they call a "walkable city", ha! Because you may be able to walk there, but it's not so easy when you're lugging groceries, drenched with sweat, walking back home. And you can't carry that much, so you have to keep going back and doing it again. The nearest grocery is seven blocks away. The pharmacy is eight blocks. The library (where I get DVDs for Bob) is about a mile.  My legs and feet are killing me. And I think my arms may be an inch longer....

And all this hiking takes up my "me time", i.e. my daily hour or two in the a.m. when I can blog, answer e-mails, surf a few internet sites I like, read, walk the dog. You wouldn't believe how much I miss this. Or how my stress level has skyrocketed. Or how I can't seem to sleep at night...

On top of all of this, Bob's pain levels have gone through the roof. Pain in his paralyzed arm. His neck. His back. And alas, my usual happy camper is grumpy and fussy and hard to deal with. But worse, his head is dropping again and I am scared to death this may mean that CIDP is rearing its ugly head...

Bob is scheduled for facet injections for the neck pain next Friday. A worrisome procedure as they have to do it in day surgery under anesthesia. He hasn't had anesthesia since pre-stroke and with his now post-stroke swallowing issues it's a complicated and possibly dangerous procedure.... (If you are inclined to pray, send up a quick one for Bob that all goes well with this procedure next Friday--me, I'm going to be a nervous wreck until it's finished.)

And then back to the neuro doc, on May 4th, to check out what's causing Bob's Head Drop Syndrome (and pray it's not CIDP) and talk about Botox injections in that arm.

Lord, I miss those good ol' days when all I had to do was get up, disconnect the feeding pump, crush the meds and syringe them into Bob's feed tube, walk the dog, change the diapers, fold the laundry, do the dishes, tidy up the house, dash to the store in the car if necessary, have an hour to blog/read/etc., bathe Bob, get him dressed, transferred to the wheelchair, strip the bed sheets, make the bed, start a new load of laundry, transfer Bob back into bed, crush more meds and syringe them in again, spend all afternoon helping a happy, pain-free and motivated Bob exercise and do his therapy and walking practice until supper time (more meds) and set up the night feeding pump and watch a movie....

Aaaah. Doesn't that sounds like heaven, right now?

Tuesday, April 17, 2012

The Broken Down Car Blues...

I tell you, as if life isn't hard enough already, then The Green Machine takes a dump.

I have been without wheels for an entire week now. Running out of everything. Hiking to the grocery store, the library, the pharmacy, the overpriced convenience mart. Hauling back what I can carry, which isn't much. Meanwhile, Bubba (our mechanic) works on the car finding more and more things wrong with it and having to order parts from Timbuktu...

I guess, what do you expect when you drive a 1973 Dart Swinger? Especially one with a V-8 engine, which is pretty much a rarity for that model car.

I suppose it would be wiser to have a more conventional car... But The Green Machine is Bob's baby. She's like family. So I got to keep her running. And right now, she's all I got. Even if she is stuck over at Bubba's garage waiting for parts...

Everyone should be so blessed to have a car mechanic like Bubba. I tell you, he's a sweetheart. And a miracle worker. If anyone can get The Green Machine going, Bubba can. And not only that, he's honest and always gives me a discount. Right now, he's trying to fit a radiator for a Dodge Charger into The Green Machine and to do that, he's got to chop it down and weld it. This because there doesn't seem to be a single Swinger V-8 radiator in the entire US or Canada available unless you buy one from one of those custom collector car places which would cost an arm and a leg. Like I told you, he's a miracle worker and always goes the extra mile.

Bubba and I have spent a lot of time of the phone this past week with his daily good news/bad news reports. The other day when he called, I was busy with Bob so told him to call me back in five minutes.

Now I never answer the phone at The Pink House, letting the answering machine pick up, a sort of poor man's caller ID--if you will, as we have way too many darn creditors hassling us day and night. But that day, exactly five minutes later, the phone rings, so I'm thinking it's Bubba calling back and I pick up the phone. The conversation went like this:

Me:  Hey, Bubba!

...dead silence on the line...

Me:  Bubba?

An unfamiliar woman's voice:  Hello?

Me: (thinking) Oh shit, a creditor!!!

Woman's voice:  Do you speak English? 

Me:  Bubba! Bubba! Bubba!


Well, that's one way to get rid of a creditor. Ha! Sometimes, you just have to laugh. Or else you're going to cry.

Friday, April 13, 2012

ST: Back On Board

Bob had his third appointment with the new Speech Therapist this week, you know the one who told me Bob was "functional" and didn't need speech therapy. Well, she must've went home and thought about it after our little "talk" and she arrived on Wednesday with a totally new attitude. I guess it pays to put one's foot down, occasionally.

She actually brought in some worksheets for me. She said she had looked for Level 2 Guides that I asked for, couldn't find them, but would keep looking. She gave me some ideas on how to work on this without the guides, if she can't find them. Then, she ran Bob through a list of words trying to figure out his main articulation problems. She also tried a bit of Melodic Intonation Therapy on him. (This therapy is a sort of tapping out a rhythm while speaking a difficult word or sentence.) I asked her if she would continue to work on the Melodic Intonation Therapy with him as it seemed to be helping him when she tried it and she agreed start that therapy next week.

She also gave me a helpful tip to try with Bob when he perseverates, i.e. gets stuck on a word or phrase and keeps repeating it.  Which is to touch him, physically, on the hand and arm. A physical sensation or movement, she said, should distract him and "unstick" his brain. She also said a kiss would work as well.

I told her if I kissed Bob every time he perseverates, he'd start doing it on purpose! ha!

But I couldn't believe this was the same ST, a complete turn-around from Bob's last appointment. It really does pay to be a bitch, sometimes! ha!

Anyway, I guess we'll keep this ST for now. I do like this Melodic Intonation Therapy idea. It's always good to try something new and Bob does love to sing. And he does have an articulation problem, mainly because his mouth and tongue are still weak and/or partially paralyzed.

Monday, April 9, 2012

Hobnobbing With The Experts

Not long ago, I joined a caregivers' forum through the National Stroke Association called Careliving and imagine my surprise when I saw author Madonna Siles was also a member.

I was just in the middle of reading her book Brain Heal Thyself so I recognized her name right away. I shot her a message through that site and brazenly asked her a couple questions. She has a unique perspective on the use of the subconscious in the brain recovery process, mostly through pre-stroke memories. I had asked her how I might apply her theories to Bob, who is immobile, as so many examples she had in her book required a certain amount of mobility. She messaged me back and asked for my phone number so that we could talk about it. I couldn't believe it. Believe me, I was a nervous ninny (a famous author calling me! aaah!) but sent her our number and she actually called and we had a nicest chat for nearly an hour! She gave me a few clever ideas to mull over and also mentioned Aqua Therapy.

That's the third time someone has mentioned Aqua Therapy for Bob. Is this a sign? I think I will ask his primary care doctor about it when we see him next. I'm not sure if Bob could even go into a swimming pool with his feeding tube... also, knowing him, he'll probably pee in the pool. aargh.

Anyway, Madonna is the author of two books on brain healing/recovery, her website is at and I'd like to thank her for sharing her expertise with me!

The second expert I met on the Careliving site is Mark Ittleman. He is a speech pathologist with over 40 years experience and has recently written a book called The Teaching of Talking which will be released in June. He has his own unique perspective on speech therapy as an ongoing daily therapy best handled by the caregiver (I like this already! ha!). Anyway, I replied to his posting and he replied back and before you know, I ordered his book and he very kindly offered to send me a preview copy so I wouldn't have to wait until June to get started. Since then, we have communicated back and forth through e-mail and he is quite supportive and kind and happy to offer his expert advice.

I have just started reading The Teaching of Talking, and the first part of the book pretty much doesn't apply to Bob as he handles single words, yes and no questions, very well, but we will be jumping in with both feet using his techniques for working on phrases and sentences as soon as I can digest all this material!

Mark's website is at and I'd also like to thank him for sharing his expertise with me.

And thank you, too, to Linda who writes a blog at for sending me the link to the Careliving site for stroke caregivers.

I guess that covers my gratitude base for today!

Thursday, April 5, 2012


I tell you, I am so sick and tired of this word: FUNCTIONAL. I am so fed-up with FUNCTIONAL that I really just want to scream.

OK, allow me to scream for a moment. 

OK, I got it out of my system. Sort of.

The first time I heard that word used about/against Bob was in PT Outpatient Rehab at the time of his discharge, i.e. 'No Functional Improvement' and I said, huh? He is improving. But the therapist said, "It's not FUNCTIONAL improvement". So I say, but he came here unable to stand, and now he's standing. And he came here unable to walk, and now he's walking on the parallel bars.... The PT interrupts me and says, but that is not FUNCTIONAL. You don't have parallel bars all over the place to hang onto so therefore he cannot FUNCTION in normal life.....

OK, I get it.  I don't like it, but I get it. We'll work on that....

Yesterday, the Speech Therapist comes in and tells me that Bob's speech is FUNCTIONAL.

Meaning he can ask for what he wants, i.e. point to the ceiling fan, say turn it up or down. Point to the radio, say turn it off or on. Tell me if he needs to pee or poop. Tell me if he wants water. And that is FUNCTIONAL. 

So therefore, he is doing GOOD!!! And therefore he doesn't really need Speech Therapy, so she'll work on the swallowing instead.....

And I am thinking, what? So I say: But what about being able to have a conversation? What about being able to express his feelings or thoughts or talk about, I don't know, the weather? politics? the neighbors latest antics?  

Oh no, ST tells me. That's too complex. THAT'S TOO COMPLEX.  She says that's too complicated. She says I'm asking for TOO MUCH. 

And I should be grateful that Bob is, speech-wise, FUNCTIONAL.

OK, I guess I should be flattered, because I must be a darn good speech therapist. Because back at Outpatient Rehab that ST told me Bob would never be FUNCTIONAL in his speech and that his prognosis was poor. And he should learn to make gestures and point at pictures instead of speaking....

So now he's FUNCTIONAL. And that's it. I'm supposed to be happy about this?

OK, I did tell the ST a thing or two after this discussion. I showed her what Bob and I have been working on, asked her specifically for tools i.e. Level 2 guides in Increasing Length and Complexity of Sentences (I have Level 1) and some other stuff. And she did say she would look into it, but still she thought it was "too complex" for Bob.

And I told her I didn't care if it was "too complex".  I wanted to work on it with him, anyway.

And right before she left, she suggested if I wanted to continue working on Bob's speech, I should work on making it MORE FUNCTIONAL.

So I asked her what she meant. And she demonstrated it this way:

She said to Bob, "OK, pretend we are in the bank and you want to cash a check. So you go to the teller and what do you say?"

And Bob pointed his finger at her, like a gun, and said, "Robbery!" 

Well, that's FUNCTIONAL, I guess. ha!

I'm giving this ST one more chance and if she doesn't come in on Wednesday (Bob's next appt.) with something helpful, I'm calling the agency and requesting a different therapist. Because, this is just crazy.

At least, that's what I think.....

Wednesday, April 4, 2012

CerAxon: The Verdict is In

Last week, Bob completed his six weeks dose of CerAxon, a sodium citicoline oral solution. His daily dose was 1000 mg in the morning and another 1000 mg in the evening. As promised, this post is my report about our experiences during these past six weeks.

Energy & Motivation:

The first change I noticed in Bob was immediately after Bob's first dose. (See Feb. 15 post: CerAxon & Bob Revs His Engine). Bob seemed suddenly full of energy and said he "felt different". I thought it was just a fluke or a coincidence, but I was wrong. These past six weeks, Bob has been running in high gear, full of energy and so very motivated to do his therapy. It's as if someone flipped a switch in him. And I am having trouble keeping up! ha!

Every day, all he wants to do is "exercise" (his word). If I suggest playing Scrabble, he shakes his head no and says, "exercise".  So exercise we've been doing, all day long, every darn day. And not just that, he's increased the amount of repetitions, added new exercises and increased the number of times walking at the rail. Like I said, I'm having trouble keeping up with him and honestly, had to cut him back because we just don't have enough hours in the day.

I remember reading some study research on citicoline (the main ingredient in CerAxon) the results which indicated that the group of patients taking the citicoline did better in Acute Stroke Rehab than the control group which did not take the citicoline. Now, I think I know why! If everyone taking the citicoline was as energetic and motivated as Bob became, it's no small wonder they improved faster!

Cognitive Thinking and Speaking:

Not immediately, but around the third week, Bob's thinking seemed to be getting a bit clearer, less foggy. Also at this same time, he began to, on occasion, sound like "old Bob" again. By that, I mean, he would say something, one of his old catch phrases, and sound perfectly normal. Or his tone of voice, the way he said something, sounded, once again, like his old pre-stroke self. I wish I could report that this is always the norm, it's not, but more and more a bit of "old Bob" pops out, sort of out of the blue. And it seems that he is speaking a little better, though I am not always the best judge of this. I plan to take another video of him speaking in the near future to compare to the last one I took. I do know that the new PT, who was here for 3 weeks, told me on her last visit that she thought his speaking had suddenly improved... Hmmm..  Also, he is understanding better, I find myself not having to re-explain things as often. It's as if a fog has lifted in his brain.

Improved Movement in that Right Leg:

He's moving his right leg better and moving it in more ways than he has done prior to this six weeks.  We also started some new exercises, thanks to his new PT, which, of course, could be the cause of this improvement. So did the CerAxon cause this or the new exercises or was it a combination of the two? I'm not sure. Unfortunately, our study group only has one lab rat! So all I know is that darn leg is moving better these days!

Short-Term Memory:

Pre-CerAxon, Bob and I would play his Memory game and I always won. He was lucky to match 5 pairs, usually came up with 2-3 pairs. Yesterday, we played the Memory game and he nearly beat me! I say nearly, as he was ahead in the game the whole time until the very end. He had collected 8 pairs and I collected 10. I also noticed, he was less hesitant while playing this game, more assured that he knew where the matching card was hidden. A big improvement here.

So there it is, my unofficial Pink House study on CerAxon. I do believe it has helped Bob. He had no bad side effects. I'm glad we had this chance to try it. I wish I had known about this a year ago--as it is recommended to be used in the first six months post-stroke and Bob is 17 months post-stroke... But like they say, better late than never.

I would certainly recommend CerAxon to anyone who is experiencing memory issues, cognitive issues or even just wants to boost their energy post-stroke or TBI!

I would like to thank Stephanie, the representative who so kindly sent Bob the CerAxon. Their website is at

Also thank you to Dean from Dean's Stroke Musings who sent Bob his free CerAxon sample to add to our supply!