CIDP: Thank God It's Gone

CIDP attacked the nerves and muscles in Bob's neck,
making it impossible for him to hold his head up....

He had to have a monthly 5-day IV-IG infusion
of healthy blood plasma into his blood stream....

Even on "good days", he was weak and fatigued
and in chronic pain. The meds left him bloated and swollen.....

For the first time in four years, he can hold his
head high!!!

The neurologist says the trauma of the stroke
shocked the CIDP into remission.

Let's pray it stays that way!

Cold Shoulders & Paranoia At Rehab

This is one of those "good news/bad news" posts. The good news is that Bob got an extension on his therapy, both occupational and speech/swallow, but (the bad news) the therapists only agreed to four more sessions. Which isn't much. But I suppose it's better than nothing. And, on top of it, those two therapists are certainly acting different since receiving the doctor's order for continued therapy.

The occupational therapist was especially cold. Although she agreed to continue, she gave me a big lecture about how the insurance company may not pay for the additional sessions because Bob's progress was "too slow" and we may end up paying the whole amount ourselves. I found this odd, since I had already talked with the case manager at Rehab (he's the guy in charge of insurance issues) and he told me that the insurance would be "no problem" for the extended sessions.

The speech/swallow therapist was another story. She was positively paranoid. She did get out the e-stim unit for swallow therapy but refused to give Bob anything to swallow. She wanted him to "dry swallow" which Bob didn't seem to understand (he seemed to think she was asking him to cough or clear his throat, which he kept trying to do). The whole session was simply ridiculous. Previously, swallow therapy has involved attaching electrodes to Bob's throat (these electrodes sort of grasp his muscles to help induce a swallow reflex) and at the same time giving Bob a small teaspoon of pudding or italian ice to swallow. He's been doing this therapy ever since he got home from the hospital, with various therapists, without a problem. So, I don't know what the big deal is all the sudden. When I asked her why she wouldn't give him anything to swallow, she told me a long story about some other patient who aspirated and ended up in the hospital with aspiration pneumonia, then went on and on about Bob's swallow video results and how she couldn't be sure that anything she gave him would go down his throat the "right way".  She also said, "if I were you" that she wouldn't give him anything to practice swallowing with at home, either, as it was far too "dangerous".

Good grief. Who do you believe? The neurologist said Bob's recent swallow test was "better" than the last one. After the last one, in February, the speech pathologist told me that Bob could have anything that was "apple sauce consistency" for "pleasure and practice" at home, although he would have to be supervised while he was eating and should only be given a "small" amount. Which we've been doing. And Bob loves pudding, especially vanilla/chocolate swirl, and mashed potatoes with gravy.  And now I'm supposed to stop doing this?

And how the heck is he supposed to improve his swallow if he isn't allowed to practice???? I know there are some "exercises" for the tongue but it just isn't the same thing as actually swallowing which uses all those throat muscles. And as far "dry swallow": Bob doesn't seem to understand this concept and I don't know if he can even do it, as he's been suffering from what the doctor calls "dry mouth syndrome" and is not producing much saliva....

All I can think is that the speech/swallow therapist is doing the old "CYA" (cover your ass) because she doesn't want to be responsible if Bob aspirates. But now, she's got me a bit paranoid.

And a bit more good news/bad news is that I think we are finally seeing some results from the Bioness machine. Bob has indicated to me that he has some sensation now in his fingers. This is certainly a new development. But the bad news is that the occupational therapist is only going to do four more sessions with that machine.....

Lord, it seems for every step forward, we are thrown two steps backward.

CIDP Still "Gone" & Battle At Rehab

Yesterday morning, I still had high hopes of getting, at least, Speech/Swallow therapy to continue. I had gotten the swallow test results from February and gave those to the Speech Therapist. I thought it looked good, that Bob had indeed "progressed" since February, so you can imagine my devastation when we met with the Speech Therapist and she disagreed with me. During the first part of our session, the therapist went over the test results from February and also Bob's video from the recent swallow test, again pointing out problem areas. She told us that Bob's prognosis for recovery was "poor", that he had not progressed since February and said she consulted an "e-stim expert" who agreed that continued therapy would not help him and so she was ready to discharge him from the therapy.

This was quite upsetting for the both of us. Bob, bless him, even tried to defend himself. He told her, "I get better" and "I do good" to no avail. Watching him plead was just heartbreaking. I had to leave the room at one point, tears were welling up in my eyes and I had to get out of there just to compose myself.

I don't understand it. I have read both reports, the one from February and this new one. And though I'm not an expert, it looks like progress to me. For example, to compare the two reports (italics are mine):

Feb. report: "There was severe impairment of the oral phase."

    June report: "Oral phase of swallow shows mild delay with mild difficulty propelling the bolus posteriorly in the oral cavity."

Feb. report: "There is significantly delayed swallowing response"

June report: "Mildly delayed initiation of swallow is evident."

I ask you, isn't that progress?

The rest of the day at Rehab was spent "discharge planning", i.e., both the OT and ST giving me instructions on how to do therapy at home. This therapy consists basically of exercises as there is no way I can do the e-stim at home as I don't have the machines. Very disheartening, the whole thing.

After rehab, Bob had an appointment with his neurologist. The good news here is that after an exam and a few tests, the neurologist is certain that Bob's CIDP is gone, or as he said "inactive". Doctors will never admit that something like CIDP is "gone", just in "remission". Well, whatever. This certainly is good news!! We then talked about Rehab and, of course, I told him all the trouble with being discharged and gave him copies of the two swallow tests and though he was disappointed with the new results, he said the new test was certainly "better" and (get this) the doctor is going to send a new script to the Rehab Center requesting them to continue Bob's therapy!  Both OT and ST. Yes!

Now, we'll see what happens. Will Rehab follow the doctor's orders? Will the therapists be pissed that I have gone over their heads?

We go back to Rehab today. 

Stay tuned....

How The System Works

Every so often, and I do mean often, some well-intentioned person will say to me something like “there ought to be more help for you out there, Diane” or “I know someone who gets xyz help/services, can’t you get the same?” And you know, I used to think that too, when I was naive, before we got caught in the "system", as it were. I used to think there was "help" somewhere "out there" for people like us.

Jenn’s comment (a few posts down) about respite rather reminded me of this, and thank you, Jenn, I know you are only trying to help, but I checked out the link you provided but found nothing there but a bunch of programs I already know about and that Bob doesn’t "qualify" for and some very nice “affordable” agencies that I could hire, if I had the money.

The key word here is “qualify” and every state-run, federal-run, not-for-profit agency (and believe me, I've been everywhere checking this out) has “eligibility criteria” and one must “qualify” for their programs. The criteria are more often than not based on age and/or income. Although some programs have disease-specific criteria, i.e. you have to have X disease to qualify, for example, there are programs for folks with Alzheimer's, Parkinson's and AIDS to name a few. 

Just try finding help when your husband is a 52-year-old stroke survivor who gets $1363/month in social security disability. He’s too young for the elder care programs, too old for the children’s programs, he’s not a “dependent adult child” living with a parent and he makes “too much money” for pretty much everything else including SSI and Medicaid (the income limit for these programs is $1,011/month). And as for ‘disease specific”, well, he doesn’t have the "right" disease.  Once I did find an agency which specialized in helping folks with CIDP, and so I applied for Bob but he was turned down because his doctor had prescribed “gammagard” and not “gammunex” for his treatment and that agency had a “drug specific” criteria…..

I suppose there are some “lucky” (I use the word loosely) folks who meet the criteria of these programs, but alas, Bob is usually not one of them. He does get some help, i.e. he qualified for social security disability, for Medicare (although Medicare didn’t kick in for two years after the “disability determination date” and he has to pay a premium + pretty high co-pays for that), for “Medically Needy/Share of Cost” which is a program through Medicaid (his share of cost is $719.00/month meaning that after he pays for the first $719 Medicaid will pick up the rest, this is per month, it doesn’t roll over into the next month). He gets “extra help with Medicare prescription drug co-pays” through the SSA and this saves us a bundle of money as he has 18 prescriptions, some of them very expensive, although it doesn’t cover the prescriptions that the insurance doesn’t cover, and we have to pay for those out-of-pocket. I applied for and we got a “disability exemption” on our property taxes. He also got a “disability discharge” on his student loan. And he gets a “lifeline” disability credit on our phone service, so that’s how we can afford the Internet! (It only costs $28/month for both Internet and phone service, a real deal, though the service is pretty basic).  And a wonderful group called CASIL (Caring and Sharing for Independent Living) paid for and installed our wheelchair ramp. So we are not without some help.

And I could, if I wanted, put Bob in a nursing home. The state would happily pay for that and I could (I understand) keep a “portion” of his disability check on top of it. I suppose this is why so many people do end up in nursing homes, because there just isn’t a lot of "help out there". But, I do think Bob’s got a better chance of recovery here at home, with me. And so far, I’ve been handling it. (With only an occasional meltdown!)

As for the “respite”, well, there is one program through the state that he does qualify for, but there is a two-year waiting list. And I believe Hospice would send a “volunteer” but this is a volunteer not a nurse and Bob really needs someone around who can change a diaper and give a tube feeding if I’m to be gone any length of time. My neighbor still comes over once a week so that I can go shopping or run errands for an hour or two and that is about as much time I feel safe leaving Bob in the hands of someone “untrained”.  So I have my “volunteer” for the moment and feel safer leaving Bob in the hands of friend instead of a stranger.

So, that’s how the system works—a bit broken, a bit lopsided and a bit better for some people than for others, the ones who fall through the cracks. Unfortunately, at least for us, I found out that Bob falls through a lot of cracks, and so, there isn't a lot of help out there.

Video Swallow Study

Actually, it's called a "videofluoroscopic dysphagia evaluation". Bob had his yesterday and, unfortunately, the results were not very good. This time, I got to watch the procedure, which was quiet interesting. Bob has had several of these studies, but I was never invited to watch before this one.

First, before they started the test, they had to send for two orderlies to physically pick Bob up from his wheelchair and set him into another chair. The chair they use is called a "Hausted Vic Chair" and is quite narrow, so narrow that Bob looked rather squashed in it. I wondered how they ever get anyone who is large into such a chair. They strapped him into the chair and positioned him between what looked like a blank wall and the x-ray device, which was lowered on the other side and so close that Bob had to pull his shoulders inward to let the device be put into position. It did not look very comfortable. I stood behind a glass partition with the doctor and a television monitor on which we watched the video. The doctor was dead silent through the whole procedure, so I was left to make my own interpretation of what I was seeing on the monitor. I tell you, it's a rather bizarre feeling to be looking inside your husband's skull and neck while he sits across the room!

The therapist began the evaluation with chocolate pudding mixed with barium. You could see the pudding on the monitor going through Bob's mouth, out the back and down his throat. It looked good to me, because the pudding went down his throat, although rather in splats of three separate swallows. You could see all his muscles moving. She did the pudding twice with the same results, about three separate swallows but it all went down. Next, she tried some thickened liquid (Bob later told me that this liquid "sucked", meaning it didn't taste very good.) The liquid went through his mouth, out the back and then, just sort of sat there. Stuck. Right at the top of his throat, toward the front, an area I was later told is his epiglottis. I could hear the therapist coaxing him at that point to "swallow", "swallow hard" and "clear your throat" and finally the liquid slipped down his throat, but a small amount dribbled into his airway. Not good. The therapist called the evaluation to an end at this point, because, she told me later, that she was not inclined to let her patients aspirate. The doctor then left but not before turning to me and saying in a very self-righteous tone, "so, he was smoker, huh?" At which point, I wanted to slap him.

Afterward, the therapist reviewed the video with me and pointed out a few things, like the "epiglottis" which she said was weak and barely moving. I pointed out that the epiglottis was pretty much situated in the same area where the electrodes are placed for e-stim therapy and asked her if continued e-stim wouldn't help him. And we had a long discussion which consisted of basically me trying to convince her to continue with the swallow therapy and her making excuses. At one point, she confessed she felt "caught in the middle" and that she really did want to continue therapy but felt pressured by the case manager to discharge Bob. At the end of the conversation, we agreed to a plan, which is that she is going to do some research on the epiglottis and e-stim, to see if there is any studies etc. out there indicating that e-stim can help this particular problem (so that she can present this info to the case manager in order to argue for continued therapy) and I am to retrieve the video footage from his last swallow study in February (done at a different hospital) so that she can compare the footage to this new study to see just how much progress has been made.

I wish I had better news, but at least there is some hope for continued therapy. Right now, Bob is scheduled for one more week of swallow/speech therapy and that's it. I already called the hospital where Bob had his eval done in February and can pick up a copy of it on Monday.

Bad News at Rehab

Yesterday was Bob's case management meeting at Rehab and unfortunately the news was not so good. Both Speech/Swallow Therapy and Occupational Therapy are ready to discharge him. They tell me that although he is progressing, his "progress is too slow"....

I'm very frustrated. I don't get it. I thought that progress is progress and as long as he's progressing and not "plateauing" he could continue the therapy.  I mean, the guy had a massive stroke, 80% of the left hemisphere of his brain damaged, so isn't he allowed to be a little slow in his progress???

I guess I can sort of understand OT discharging him, as his right arm/hand have not improved, although this means the Bioness treatments will stop and they only just started them. It also means an end to help with reading and writing. But mostly, I am terribly upset with the Speech/Swallow therapist, because lord almighty, Bob has a feeding tube and if therapy is stopped, it looks like he may never get rid of it, never be able to eat a meal or sip a drink again. And even the case manager commented how much improved Bob's speaking was at the meeting--so what's with that?

Bob is pretty upset about it, although I don't think he understood what was happening until I explained it to him more slowly once we were home. He kept asking "Why?" and when I explained "they say your progress is too slow," he replied "well, pardon me."

Actually he said "well, mardon me"--he does have trouble with the "p" sounds.... But I got the picture.

The only good news is that Physical Therapy will continue. Thank god for that. So I guess they'll teach him to walk, but they don't seem to care if he can talk, eat, read or write, or move his right arm.

Today he has a video swallow test. I am praying the results show more progress than expected and maybe convince them to continue with that therapy.....