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Request for help, information, shared experiences -- about strokes.

[I'm leaving this sticky, for obvious reasons. Everybody's help is appreciated! UPDATE There are new posts beneath this post, CMike suggests I say. --lambert]

A very good friend had a stroke on Sunday afternoon, and I found him when I got to his place for dinner that evening. It was too late to try the blood clot busting drug, which is best in the first hour and isn't used after the third hour. All we had to go on was when I last spoke with him about the dinner menu on the phone and when we foung him, but it was beyond the time for using the drug. I then recalled there is such a drug and time is of the essence for its use. But I didn't know about the time limit, and thus didn't know why the ER docs were so insistant on my pinning down when I last spoke with him. I don't know if the drug is uselss after three hours or actually may cause damage.... I might have lied had I known the facts...ao maybe it was good I didn't know...?

He had severe muscle weakness on his left side, vision tunneling, slurred speech. His leg is very strong now, the arm getting better, but he cannot swallow and got a stomach tube, a PEG, yesterday. His vision is somewhat better but still tunneled (looking directly at his room number sign, he had to turn his head to see the 4 digits; otherwise, he sees only half of the digits, those on the right.

What I would appreciate from the Corrente community is any suggestions on what books I could read to help figure out how to help him with rebab. Also, I'd appreciate hearing about shared experiences any of you may have had with friends or relatives. And, lastly, are there any really good web sites and web chat/support groups which I could try.

I have been spending a lot of time at the hospital since his short term memory is not functioning now, and, while he's fully there to answer questions, he doesn't remember what he said or what was said to him. Is that nature's way of helping the stroke victim to avoid the utter darkness of their situation?

I also do not have any health proxy for him; fortunately, he was adamant about saying to the ER doctors and others that I should be talked to about what procedures they have in mind for him, etc. Didn't remember saying that, but would repeat it But, that means i have to be there to have the medical personnel see me with him, see him say they should talk to me.

He has two living brothers half a continent away, but both of them are mentally highly unstable, with one much more bipolar than the other and both alcohalics. He has been firm that I am not to tell them about his stroke. Know anything about any legal aspects to this?

He's too young to meet the SocSec full payment requirement already in place and too young to meet Romney/Ryan's or Simpson-Bowles-Obama's ideas that everyone somehow can work long into their 60's before being eligible for Medicare. He's a living example of what can happen should either of the parties get their wishes with SocSec/Medicare and mess it up big time*. He is still employed, but I've been told rehab take about a year before he could go back to work. He loves his job, but this may be too long a time for his employer and Hh may be forced into retirement or onto disability....

Anyway, I'm his spokesperson and memory for right now. It's not easy to get info, altho' the nursing staff on her floor and several of her doctors know that she views me as her spokesperson.

The social worker told me that he is not considered cognizant enough right now to fill out a health care proxy form, and I haven't been able to find his health care directive form yet. But, I understand I can be named proxy on a temporary basis, which I would prefer because I believe he will get much better.

Anyone know more about strokes? About stroke recovery? Suggestions -- on a proxy or for helping him to get better? He now told me to call some friends, so that is a change from his initial don't call anyone request to I could call some people, but no visits to some visits would be OK. His cardiologist said brief visits from as many different close friends as possible provide additional stimulus and would be very good for helping the brain to recover, but to try not to tire him. I just try to be there and to answer his questions, help him practice scanning, etc.

I have to talk to his neuro docs; that is my next goal.

It's awful to be with someone dying for a drink of water when he can't be allowed anything by mouth. There are little sponge swabs, but they don't help much....

Thnx!

*Yes, I do realize anyone on the cusp of age requirements is disadvanted if something terrible happens prior to meeting the age requirment. For SocSec there is disability and Medicare, but, still.... And sometimes that can take a long time to be accepted for.

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Submitted by JuliaWilliams on

Back in the mid 1980's my father had a severely debilitating stroke, and after 4-5 days his PCP was going to transfer him to a nursing home for a PEG and basically told me he would never walk again. In the meantime, I was doing research (mind you I wasn't an RN at the time) and found the premier stroke rehab facility in the area. I called them directly, gave them a rundown on his condition, and his insurance coverage (which was golden then) and got him accepted into their program. I arranged for an ambulance and told the staff what was going on. After some back and forth, they relented the next day (after some, shall we say strong advocacy on my part) and off he went. He arrived non-verbal, unable to walk with severe weakness on his right side. He left walking with a cane, talking, and using his right arm somewhat. With continued rehab he got even better. This is not to say everyone will end up the same. But it does tell you that outcome is more dependent on the rehab than people think. Specialty centers (which generally can be found attached to or in hospitals) are the best, with the most up-to-date treatments, and one good way to find them is to search for articles locally on new stroke treatments, etc. Hope this helps.

Submitted by JuliaWilliams on

There are varying protocols, but most institutions subscribe to an experimental elongated window, from 3-4.5 hours, with additional exclusion criteria. Not knowing the particulars, I can't tell you if the patient would have fit. Here's one protocol. But remember, these are specialized medical decisions, that depend on complex variables of criteria from the start, and it is imperative that the situation be described truthfully, so you did absolutely the right thing. There, so far, have been found increased risks after the window that make the risk/benefit ratio worse.

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Submitted by ralphbon on

The protocol Julia links to, buying an additional 1.5 hours for rtPA administration barring contraindications, is based in part on recommendations in this 2009 advisory from the AHA Stroke Council.

That's an academic question now for your friend, but the upthread advice on getting intensive rehabilition started as quickly as possible is solid.

Back to academics -- politics, really -- I'm wondering whether some institutions balk at administering rtPA beyond 3 hours because of the chance that insurance will deny coverage based on the more standard guidelines. I don't know the answer, but if that's ever the case, it's another example of the criminality of our healthcare financing system.

Submitted by JuliaWilliams on

Those studies IIRC showed increased risks of complications after 3 hours, and when tPA was being studied for stroke that was the outside window they used. After tweaking the dose and delivery rate, there was an ability to expand that window with perhaps fewer complications, and most major medical centers are using this protocol. (It pays to be conservative, having a brain bleed on top of an ischemic event can be catastrophic.) I've not ever seen any evidence that insurance status is an issue for administering tPA, only certain physical criteria, like age, firm documentation of last normal status, NIH stroke scale score, blood pressure numbers, blood sugar number, recent surgery, and most especially recent treatment with blood thinners etc. From the article you posted;

'rtPA should be administered to eligible patients who can be
treated in the time period of 3 to 4.5 hours after stroke (Class
I Recommendation, Level of Evidence B). The eligibility
criteria for treatment in this time period are similar to those
for persons treated at earlier time periods, with any one of the
following additional exclusion criteria: Patients older than 80
years, those taking oral anticoagulants with an international
normalized ratio 1.7, those with a baseline National Institutes of Health Stroke Scale score 25, or those with both a
history of stroke and diabetes. Therefore, for the 3-to-4.5–
hour window, all patients receiving an oral anticoagulant are
excluded regardless of their international normalized ratio.
The relative utility of rtPA in this time window compared
with other methods of thrombus dissolution or removal has
not been established. The efficacy of intravenous treatment
with rtPA within 3 to 4.5 hours after stroke in patients with these
exclusion criteria is not well established (Class IIb Recommendation, Level of Evidence C) and requires further study."

Submitted by hipparchia on

ah yes, the joys of coping with dysfunctional family and major illness at the same time. joy joy joy. not.

not sure if these people have a location near you, nor can i tell if patients or their representatives can contact them, or if it's up to the hospital or doctor or clinic, or what (or maybe you ask the hosspital to contact them for you?). but they mention disability and employment and competency and power of attorney, so if you do decide contact them maybe they can direct you to a good legal aid office or attorney.

i'm with julia, don't take any long-term prognoses as written stone this early. and definitely go for the best rehab you can find. bodies, including brains, have a pretty good capacity for healing, repair and adaptation, especially if they get good help.

presumably they're a reputable organization - the white house has lauded one of their medical-legal partnerships.

Submitted by lambert on

However, know that your mere presence will help your friend more than you could ever imagine. The practicalities are great too, but simply to have another soul in the room will be a big help.

I would want to know who has power of attorney. It's one thing to be a spokesperson, it's another thing to make decisions on their behalf, and only someone with power of attorney can really do that.

And if it were me on the bed and the TV were on, I would insist that the TV be off and if some other stimulus is needed, that your friends favorite classical music be brought in.

Submitted by lambert on

I'm still worried about that power of attorney. The missing medical directive... Must be somewhere. Is there a family lawyer and would they know?

I second the comments on the possibility of rapid recovery. When my mother had her first stroke (a cumadin (sp?) mishap) she was up and dressed the second day, though very frail. I basically walked her into town and back each day and that strengthened her back up. And I agree on the importance of stimulus. There will be tests for that, but those stimuli are designed for the test! So whatever he loves to do, bring him that!

Cujo359's picture
Submitted by Cujo359 on

"I don't know if the drug is uselss after three hours or actually may cause damage.... I might have lied had I known the facts...ao maybe it was good I didn't know...?"

I'd say that it's bettter you didn't know, in this particular case. I'll just tell you something I keep hearing from medical professionals - in the right quantity, drugs are helpful. In too high a quantity, most are poison. It's likely that drug has some nasty side effects, at least for some people.

Lambert's point about power of attorney is also very important. Right now, I suspect your friend will need someone to represent his interests. Hospitals can be bureaucratic places, and someone who isn't well is not in a position to do that effectively.

Wishing you and your friend good luck.

Valhalla's picture
Submitted by Valhalla on

This is just my 2 cents, but I'd say feel free to get pushy about the health care proxy. The standard, as far as I can tell, is whether your friend can understand what the document is and how it works. That's all. (I don't know which state your in, but in NY, capacity is defined as ""the ability to understand and appreciate the nature and consequences of health care decisions, including the benefits and risks of and alternatives to any proposed health care, and to reach an informed decision.") His problem with short-term memory doesn't necessarily incapacitate him legally. When my grandfather was in a nursing home, the social workers often tried to steer my mom and aunt (who did have his power of attorney and health care proxy) toward the whatever the least disruptive, least controversial course of action was for any particular issue. Not that they ever chose anything really BAD for him, but they're part of the hospital bureaucracy, with all that entails. Mom and Aunt had to really push on some thing (even some really stupid, small things). Hospital admins, social workers, lawyers, etc -- they all dislike ambiguity and fuss, so they tend toward the conservative side, esp. when it's a non-family member. But that shouldn't stop you from getting pushy. Or, better said -- politely and firmly insistent.

Also, it sounds like you don't necessarily need a full proxy or the actual medical directive. Your friend should be able to consent to the medical staff consulting you -- all that really needs is a waiver of confidentiality. It sounds as if you would probably want to be there anyway if a really major decision needed to be made, so all you really need is permission that's lesser than a formal directive so you can be kept informed and consulted about the ongoing stuff. If he can't write out a permission himself, a neutral person could write out his statements about consulting you, and witness his signature/mark. Then you can give the hospital a piece of paper with a signature for their records.

I'm with those who think there's reason for optimism. The brain is an amazing thing. I hope he does well. And don't forget to take care of yourself too!

NWLuna's picture
Submitted by NWLuna on

Also just time and the miracles of brain plasticity. I strongly agree that a good stroke-rehab or brain-injury-rehab medicine program is needed. The fastest rate of improvement is in the first few months, but people can continue to improve long after that, even a few years later. I practice in rehab medicine, and it's amazing how much people can improve. Your friend needs cognitive rehab, speech therapy, physical and occupational therapy. A Physical Medicine & Rehabilitation physician (aka physiatrist) to the attending doc. Caution that many neurologists do not know much about rehab and should transfer care to a rehab MD or at least co-manage the patient.

Most strokes are ischemic -- a clot forms and blocks blood flow that nourishes brain tissue. But a small percent are hemorrhagic -- bleeding. In the latter case a clot-busting drug like tPA would cause more bleeding and more damage, regardless of time.

There is Power of Attorney and then there is Health Care Power of Attorney, which is what's needed for medical decisions. One is not the same as the other. This may be state dependent.

Legally, persons are presumed competent. Legal competency is whatever the attorney present thinks it is, as I unfortunately found out in regards to my mother with dementia and an unscrupulous sibling. In contrast, medical "informed consent" is much more strict. As a medical provider, I may not be comfortable with a cognitively-impaired patient giving consent to an invasive procedure. But stroke rehab is not invasive, so that shouldn't be an issue.

And please take care of yourself. Being an advocate for your friend is a huge responsibility. You will do the best you can, but you cannot know everything. You aren't to blame for not being a medical expert in all areas! Ask for a social worker to help. Sometimes they are really good.

There is Social Security Disability income (SSDI) which people can get if there disability is significant. If, heaven forbid, your friend is in this situation, this would help. I think there is a rather long waiting period before benefits kick in. If he needs to apply for SSDI, he really needs a Rehab Med physician, or stroke rehab or brain-injury rehab physician who can write letters stating the facts of disability. Academic medical centers often have good physical medicine rehab programs; maybe there's one in your area.

May your friend have a good outcome.

Submitted by lambert on

.... is definitely state-dependent. I had both kinds you mention, definitely.

Agreed very much on take care of yourself!

NWLuna's picture
Submitted by NWLuna on

I'm assuming they already checked to see if your friend's PCP (primary care provider) had a copy of his health care directive/advance directives/info on HC-POA?

This is a timely reminder to keep our own info up to date.

May all go well.

Submitted by Hugh on

I never feel comfortable weighing in on medical questions because I never really feel I have sufficient information to go on. It sounds like your friend had a major right sided event but I am not quite sure which artery was involved. I want to say lower right medial frontal but I'm just not sure.

It took out the left visual fields in both eyes. Each eyeball has a right and left visual field. Photons from the left visual field will enter the eye and hit receptors on the right side of the eye. The division between right and left in the eye is the outcropping of the optic nerve. Behind the eyes is the optic chiasmus (Greek for X) where the input, for example, from the left visual field of the left eye, so the right side of the left eye, will cross over and join up with the left visual field inputs of the right eye (which are already on the right side and so don't need to cross anywhere). These then travel together back to the rear part of the brain where they are processed into vision in the posterior lobe. So if your friend has lost only left visual fields then the damage had occurred somewhere after the chiasmus.

That he had left sided weakness (hemiparesis) means that the event occurred on the right side above the decussation (another word for crossing) of the motor nerves in the medullary pyramids (i.e. the medulla). The motor cortex is located in the frontal lobe. The primary motor deficit seems to involve Cranial Nerve XII, the hypoglossal nerve. If I remember correctly, if your friend's tongue deviates to the left or pushes more strongly to the left than the right, this is an indication of a right sided lesion involving the hypoglossal nerve. It would also explain his problems with swallowing since the hypoglossal is involved in this as well.

Not sure about memory problems. I always think first of the hippocampus but it is medial temporal lobe. It is highly sensitive to ischemic events though.

I agree once stabilized your friend should begin aggressive rehab. Those abilities which come back strongest usually show improvement earliest. There is a tailing off effect, but my understanding is that the timeframe for this has been pushed back further. I would guess the signposts are something like 1 week, 2 months, and 1 year.

The reason tPA would not be used later to break up a clot is that the artery beyond the clot would begin to necrose and become weaker. So if you re-introduced a pressurized arterial flow into it, this could result in cerebral hemorrhage making problems worse.

In general, patient's wishes trump everything. So if your friend designated you orally as his proxy and this was witnessed by hospital staff, they will go with you, especially if no one else on scene is contesting.

Submitted by jawbone on

meet with my friend's neurologist or just get solid information. The neuro was there, and a family member of patient in the next bed, who is a physician's assistant, managed to grab him in the hall as he was leaving. She was steaming about his lack of responsiveness.

Several nurses said they feared this guy's disdain. Oh my. They said try to fit your two most important issues into one question.....

Ack. But I accomplished quite a bit, working with the occupational therapist to learn more about how to help my friend get out of bed, rise from a chair or the bed, some simple exercises. An Integrated Medicine person gave some therapy. I'm also getting better at putting a diaper on!

His move to the rehab hospital was delayed because the liquid nutritional formula was causing diarrhea, which, aside from the messiness, meant he was not absorbing nutrients. He's been changed from a cafe au lait colored liquid to French vanilla colored liquid, And he ws given potassium as it had gone from 3.8 to 2.4, enough to explain his extreme fatigue.

Unless the fatigue was from bleeding in the brain. I could not get info on the results of the morning's CT scan (which I had suggested as something which might be important...) to see if the tiny bleeds were stilll there. A nurse who said she could not interpret much of the report because it was so complex said it looked to her like there was still bleeding.

I'm really tired --and making lots of typos on this flat laptop keyboard-- so am going to bed.

Thank you all for your comments, shared experiences, sources. I haven't read all of them yet, will do when I'm more rested.

Thank you all so very much. This is great stuff. I so want him in rehab, but the rehab transfer person said they do not monitor his heart issues (a fib, leaky valve, the clots which come from the two together) there, that no rehab place does. But another person with simlar responsibilities said they do!. And i worry about the tiny bleeds....

Maybe the neuro can alleviate my concerns, but, damn, while I can uhderstand the pressures he must be under, why not a simple comment to the night nurse to say he couldn't meet this everning, but would be in contact?

Again, thnx to all. Any info is appreciated. I'm going to try to pin dow what to do about the medical proxy (or whatever it's called). I'd like to get his cousin, good guy, lefty, but 5 hours away on the proxy as well. Unless that will complicate things?

BTW, his color is much better since he began getting the nutriotional liquid Saturday morning.

Submitted by lambert on

And the proxies?

* * *

Sounds like the nurses are being very helpful as always :-)

Not sure how to handle Mr. Neuro, but perhaps some nurses on this thread can. It certainly seems wrong that an X ray is not being interpreted, what is it sitting around for? So that might be a point of entry on resolving the small bleeds thing, I don't know.

What is the space itself like? Stimulating in the right way?

Submitted by jawbone on

emotionally close relative, he's rational, he and I are the executors of my friend's will, I know they talk easily and happily when they get together, and I may need support going forward. The blood relatives, the two alcohalic brothers, might feel they need to take control of my friend's affairs...and bank accounts.

But the most important objective right now is to get a temporary health proxy. But, going forward, if the difficulty with memory persists, we may need to have someone have some kind of power of attorney to manage bill payments, etc.

So, the cousin is just a forward looking possibility, and it wouldn't hurt to have someone to discuss issues with.

I just called the floor and spoke with one of the genuinely good nurses. So far, no one can tell me anything about the CT scan. The report, per the person on the desk last night, was very detailed, very complicated, and she did not feel competent to determine whether there were still active bleeds. There was wording which indicated that, but there may be language she wasn't trained to decipher which indicates that's not an issue for rehab.

I need to at least clear the dishes out of my sink! But, I think I better get down to the hospital.

Since we were told the neuro would be seeing my friend yesterday, the cousin, who had a film showing sceduled near his home on Monday could stay overnight and get to the hpostial really early,had to be on the road by 11 AM. I got there at 9:30am so we could compare notes. Overall, we had 14 or so hours covered -- and no luck talking to Mr. Neuro.

A retired doctor who's spending a lot of time with his sick wife on the floor told me that neuros tend to be intensely detail oriented, that they have to notice and follow the tiniest of details to try to map what's happening in the brain, follow clues from behavior and all possible tests. But they also often find they have only rebab to offer to their patients. Not sure what that was supposed to make me understand.

On the call this morning I was told the floor would get someone from the neurology department to talk to me (not outside doc??).

Re: Health directive -- the social worker is trying to find if there's a copy filed with the hospital.

So, after some breakfast I'm off to hospial for more seek and maybe find games. Plus, do my own bill paying -- on the libary computer. I have a virus which lets me browse, but I won't do anything concerning important passwords on it until I get dig out the virus. I can't imagine, however, being in the hospital in my friend's condition, without someone to help, to be eyes, memory, and spokesperson.

From my own experience, I've noticed telling patients what's happening is not the highest priority, probably due to pressures of caring for the acutely ill where time is of the essence. And when the orders come down for a patient to be discharged or moved, it's either very fast, sometimes sudden...or lots of waiting.

OK, gotta run.

Again, thanks to all.

Submitted by JuliaWilliams on

Sounds like you need to find out who the Case Manager (usually a nurse) is, and talk to them. They are generally easy to get hold of, the floor nurses can help with that, and they are the ones who direct placement, find rehabs, nursing homes, etc. They may also be able to help with getting hold of a doc to explain what's going on with the physical status, etc, since that determines placement. They are generally very knowledgeable, but it helps to have some idea where you want to go, as far as facility is concerned. (If you need help researching, please let us know here, I see more than one who can help with that, there are a lot of very knowledgeable people here :-) ) The bleeds are why they didn't give your friend the drug, they only use them on the clot type of stroke, not the bleeding type of stroke, since they work by clot busting, thus would not only not help in a bleed, but make it worse.

Submitted by lambert on

Thank you, Julia. It's as if civilians need to be trained to work the hospital system. How wonderful that you can do this, and how appalling that it needs to be done.

Submitted by jawbone on

me her responsibility is for the newly arrived patients in this acute care ward; I now needed to talk to the social worker. Who, for some reason, didn't call me back after I contacted her. She considered that the subsitute SW had covered S's case (I'm saving key strokes by using "S" as the pseudononymous initial for my friend). She also, when we finally did get to speak about the transfer, did not seem to like dealing with me.

The rehab people seem to be much more interested in helping and communicating, going beyond "treating." I had some wonderful, wonderful nurses on the ward, but the system is really keyed to "acute" care, then ship'em out somewhere.

The Importance of Communication and Checking What the Words Mean--

Orders, dischare or transfer, seem to me to be areas where misunderstandings occur. Before S had the tummy PEG tube for getting the liquid nutritional fluid, all he was on was saline with sugar (the latter for the brain). One day I got there at 2:30PM, and the drip was off. I asked about to the nursing ass't, the nurse, at least 4 times. When the evening nurse came on I mentioned that previously S had been on continuous saline for both hydration and the sugar for the brain, but it had been off for 6 hours. She checked, thought it was supposed to stay off, but then reread the orders. She said they were very ambiguous, but by reading the earlier orders, the whole meaning changed. She hooked up the drip ASAP.

When I got S to the rehab hospital about 2PM, the only direction they were given for the tube feeding was "7 PM," indicating he was to be fed at 7 PM, I guess. But I had been told the previous evening that, with the change from the cafe au lait fluid to the easier to digest French vanilla fluid, they had to start over at the lowest drop rate per hour and gradually over the next 24 or more hours bring it up to the necessary calories. The nurse at the rehab facility took charge and brought in their nutritionist immediately and the drip was started right away. Thank goodneess.

The worst situation was that when S was discharged from the TIA teeny stroke, he was told that he was to stay off cumadin blood thinner until he had seen his cardiologist the follwoing week. Which, on a Sunday, seemed to mean at least 8 days away -- as in is Sunday the first day of the week or is Monday?. But the cardio had ordered he stay off off only for one day (Monday), see him on Tuesday, and begin after that Tuesday visit. On Monday S made on appointment with the cardio's office for the folloiwng Monday, but the office called back on Tuesday to move the appt up to Thursday. I don't know if S took the blood thinner after that visit, and he for sure doesn't remember.... I've since looked at the "order" and it's written in code, so only the verbalized explanation from the nurse made any sense to either him or me. And the signature in unreadable, but not long eough to be the cardio's. One of the hospitalists'?

Lesson: Please do a call and response with whomever gives the discharge orders. As in, are you saying S should stay off the blood thinners for today and tomorrow, and begin again on Tuesday...etc. Or is it stay off for 8 days or so?

Would it have made a difference? I'm trying hard to stay away from the "what if's."

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Submitted by okanogen on

Your friend has a great friend in you and your aggressive, active involvement. While it is helpful for you to "know the system", it's much more important to trust your instincts, trust yourself, and demand the best care possible for your loved one.

My wife and son almost died in childbirth because the lead paternity nurse ran out of beds and wanted to send us home after 14 hours of strong labor didn't advance her pregnancy. I wasn't having any of that and we refused to leave despite a lot of threats. Ultimately the on call doctor reversed the nurse and after another 22 hours and multiple complications (breach, cord wrapped, etc.), we finally all arrived safely out the other side with no permanent injury.

I'm not saying the system is callous, but it really is a factory in a lot of ways, and the biggest input is the patient and aggressive patient advocates. They make all the difference in the world. Don't be afraid to be confrontational in defense of your goals, when put in the position of actively defying treatment wishes, they will back down. Often times their decisions are based on their other needs than your individual patient.

It might be good to get S a journal, if they have short term memory loss, they can still write down (or maybe record on a digital recorder) what is happening and when and be active in their care in that way. It also creates a record, including documenting timing of changes that may be happening to them in their recovery.

Submitted by jawbone on

when he has more energy to hold a pen. I think he can manage to recorder much more easily right now.

Thank you! Great idea. Hearing his voice may be unnerving. With no liquid, or anything, by mouth, he's getting croakier and sounds uncomfortable talking.

I need to find out if there's anything that can be done for his throat and vocal cords.

Looking back at how i was treated at the Burn Center the summer of 2010, that was a very unusual approach nowadays, it seems. But maybe burns are seen as injuries which need to be continually monitored and watched. Or, maybe pity was taken on me since I had no coverage for nursing home type care. Except I don't think hospitals do pity in this day and age.

I must say I was really taken aback at how soon they wanted to move S out of continual monitoring for his heart issues and into the rehab hospital. Especially since my elderly neighbor, who'd been in ICU in a coma for about three weeks, died shortly after she got into her rehab hospital (not the one S is in)...but she was much older. Just makes me worry.

No callback from two messages left with the social worker, so I need to get on that tomorrow. Plus I need to find out what may help S with the vision issues. A friend suggested graphic novels, with both words and pictures to suss out, scan in increments. And I got a lovely gardening book with beautiful photos and layouts, for him, as he loves gardens. Not sure if it's too advanced for just now, so I really need to get up to speed on the therapy.

Today, I worked on taming my house, making calls, paying S's bills, getting some idea of how much sick leave he has (his place of work lets fellow workers with large numbers of sick days donate them to coworkers in need...is that great or what? Bargained for that perk. Go, unions!).

And now, I must get to sleep.

Thanks again.

Submitted by lambert on

It might be nice to have something living -- I don't mean flowers.

Perhaps -- I forget the name for this -- starting some seedlings in water? So he has something that would actually grow (not just live). Would have to take account of the the light, of course.

On the book, pages might be hard to turn. It's too bad there's nothing electronic that would advance pages with a clicker he could hold in his hand. Or is there?

Submitted by lambert on

I've been seriously victimized by family members; build a bulwark now if you can.

So much for you to do. I hate smart phones, but I have to think this is one time you could really use one, to communicate with, say, Julia....

NWLuna's picture
Submitted by NWLuna on

No smartphone here tho; I spend too much time confronting technology at work as it is. Email is OK, tho I am away this weekend.

I am glad that you've found the "rehab people" to be interested in helping and communicating! I think that is typical of us (I'm a Rehab Med nurse practitioner who mainly practices in multiple sclerosis and brain injury). I've found most rehab med folks to be very holistic and concerned with helping the patient get back to functioning as well as possible.

Jawbone, are you getting some respite time for yourself? I don't mean to nag, but it really is important as I'm sure you know.

If S is stable, i.e., INR (clotting, basically) level OK, it's best if he did get transferred quickly to a rehab unit/hospital. He's less likely to get an infection and his recovery can start earlier.

BTW, if you have questions about a CT or MRI report, and can get a copy of the "Impression" or the text description by the reading radiologist, I can likely interpret that for you, though certainly not with the expertise of a radiologist.

Is S. getting speech therapy? They can work with him on the mechanics of speaking, as well as on cognitive issues. IF he's had a breathing tube, no wonder he's croaky; that should improve. Your gardening book sounds wonderful!

I am appalled that you haven't been more helped by the social worker. The case manager experience, though, unfortunately sounds typical of what I've experienced from acute-care hospital case mgrs.

The neurologist sounds like a jerk. I work with some good neurologists with excellent "bedside" manner and compassion. I've also encountered horrible ones. Just remember they are working for the patient. It's not the other way around. Sometimes they need being reminded. Since S is in a rehab hospital, he should have a PM&R (physical med & rehab) physician as his attending. That person should be much more helpful than the neurologist, and frankly s/he would know more about S's care plan and prognosis. Also the rehab RNs and nurse mgr should help. They should also have a PhD psychologist who counsels patients on adjustment to stroke & life in general, and can talk with you.

It's a terrible reality that patients need an advocate these days. And the advocate needs an advocate.

Your friend is so fortunate to have you. All the best.

twig's picture
Submitted by twig on

with flying colors, jawbone. Having you there to help is going to make a HUGE difference.

Meanwhile, to repeat what's been said many times in earlier comments, please take care of yourself. I've found meditation to be very helpful for getting the brain out of the thought loops we get into when stressed. Maybe you already do something like this, but if not, here's a link to my favorite site for mindfulness meditation, which is very easy to learn. Once you get the hang of it, you don't need a computer, and you can do it anywhere, for 2 minutes or 20 minutes, then repeat as needed.

Best of luck, and please update us on your friend's condition when you have a chance.

ygdrasl's picture
Submitted by ygdrasl on

This is the second most-watched TED talk to date:
http://www.ted.com/talks/jill_bolte_tayl...

from their website description:

One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before.

metamars's picture
Submitted by metamars on

I believe that I've heard Gary Null (garynull.com), the founder of Progressive Radio Network (prn.fm), and an expert on diet and healing methodologies, say that hyperbaric oxygen* is useful for stroke even long after the event.

Null pays 4 different people to help others with their health problems for free. I'm not sure, though, to what extent they'll help someone not in NYC. In any event, they may be willing to procure a Null-authored protocol for stroke victims, at a physician's request. 212 874 4000. One of these 4 people is named "Natasha".

* Even if I'm misremembering the details, I remember, for sure, that it involved oxygen. Perhaps it was medical ozone (?).

Submitted by lambert on

... in the void between Wal-Mart clinics and the grotesquely expensive and abusive hospital system. If we shrank the void, we'd be better off.

It would be wonderful if everything was easy to discern -- things like acupuncture also went unsupported by the health care/health insurance system was well. And Big Pharma are classic rent seekers. But Null looks like a real piece of work.