David had his last physical therapy appointment this morning (has been down to once a month for a while). He had a good session and also brain-stormed with his therapist about continuing therapy (as suggested by Dr. Ko and mentioned in the previous post). There is a place in town that would be appropriate for David's needs at this point, but they don't take HMO insurance (which is what we have), SO we're back to "fighting" (or trying to figure out how to fight) to get David in where he needs to be.
Yesterday David had a routine echocardiogram yesterday - done to check if his heart device is still properly in place. It is.
We continue moving ahead.
Thursday, June 19, 2008
Thursday, June 5, 2008
UCSF Stroke Center Visit Results
I think I'd better break this up into about 4 parts as this is going to get VERY lengthy. That way you can more easily pick and choose what you want to read!
OVERVIEW
Our visit to the neurovascular specialist at UCSF Stroke Center today was better than we could have imagined! The doctor was clear and informative and patient. She addressed all of our questions and clarified for us some things that had confused us since all of this began. She also clarified for us the different ranges of windows for recovery we'd heard. She let us know that she has seen patients continue to improve beyond a year. That was really a joy for us to hear, as we had heard windows as small as 3 months or 6 months, and since David has plateaued he'd been concerned he would be able to progress no further - so that was probably the most wonderful thing we heard while there. She recommended further tests for him and further therapy, all of which sound very hopeful and helpful. We learned a lot of the specifics of what has happened to David, why he is experiencing now what he is experiencing now, what he should do now and in the future, and what he can expect in the future. A doctor friend of mine warned me a week ago that we probably wouldn't get much out of this appointment and said he hoped we'd have a nice dinner in San Francisco, but we learned SO MUCH. Dr. Ko was GREAT! We had a one-hour appointment, and she talked with us for an hour and 20 minutes with complete patience and calmness for all we needed. She addressed confusions of the past, realities of the present and direction for the future! We sure can't ask for more than that!!
DETAILS
There are so many details - all of which are important to us, of course, and to anyone who may be reading this and is going through something similar. It's hard to know which to include. I just scrolled down my blog a bit so that I could see what I'd already written, not wanting to be repetitive, and I see where I said that David kept getting the generic answer when asking his therapists and doctors what he could yet expect to get back: "You've had a major stroke; you may get it back, you may not." That was not the case with Dr. Ko. She detailed for us the systems that have been impacted and how they usually come back and in what order. She was very pleased and surprised to see how much strength he had regained on his left side in 7 months.
She is also pleased that he has so much sensory perception on his left side. It is this, though, that is what caused David to think he was regressing a while back. (Those in the medical field reading this will probably find all sorts of errors as I try to write out what I heard, but I'll do my best.) While it is really good that he has sensation, some of it is leading him astray; it is also the case that his wiring is yet quite crossed. From what I understand the brain is interpreting signals as pain, say, from nerves that are sending messages about something else. She told him that some of the pain issues might be permanent - one example being that it is painful to him to have any covers - even just a sheet - over his left foot. Other sensory issues have to do with being able to use his left side without looking at it (can't use turn signals in the car without looking at what his hand is doing - certainly can't button anything without looking, and it is hard even then!). She was very encouraging about this aspect of the sensory issues (sensory ataxia) and said he would probably, with a lot of work, be able to get his brain to rewire in this regard. She encouraged him to do as much as he could with his left hand and to watch what it was doing and really focus.
David is very disciplined and motivated, a hard worker. He can and will do this. What was so important to us today was to find out there was yet strong possibility of this coming back. He had been beginning to feel that all this work was a waste of time at this point and that he was as far as he was going to get, so the hopefulness and information we got today is spurring him on to continue working and to work harder! He now knows it can pay off. In terms of other issues relating to sensation, it is too early to tell if he is in transition, and it is on it's way back to a more normal state or if it is at the place where it is going to stay. For instance, David expresses what he senses as his left side being turned inside out, that he feels inside his body what his skin used to feel on the outside and that the outside doesn't sense what it used to. He is both overly and underly sensitive.
She was very attentive to his desire to run long distance again and gave very good advice about that. She would like to see him have more therapy. We are over what insurance will cover in terms of stroke, but she suggested we approach it as a sports-therapy issue. He needs a therapist to work with him specifically on his stride while walking and running. If this does not take place, and if he tries to train to run, he will have orthopedic injuries. She explained in detail how he can tell when he has overdone it with exercise. Regardless of whether or not he runs races again, she let him know that he must exercise every day or he will lose what he has gained.
She also talked about causes of stroke and reminded us that although the PFO (hole in heart) is likely the cause, that is not certain. She recommends he have a blood test for hypercoagulation and that he wear a heart (event) monitor for 30 days. Her statement was that she'd be more comfortable with more testing. She'd like to see this done regardless of whether he goes back to running (in which case he should definitely have it to be cleared to exercise that vigorously). If nothing shows up in these tests, we can be even more sure it was the PFO (although we can never be 100% sure that that was the cause), and if something does show up - arrythmia or hypercoagulation, then we can do something about that and further lower his risk of future stroke.
David mentioned some of his emotional "down feeling" lately, and she said that this was the time most stroke patients are prone to depression (and when many give up and therefore make no more progress). This is because there is a steep recovery rate at first but that then a plateau is reached and the improvement is so subtle that the patient, who is living with this day to day and minute to minute, can't see that there is any improvement at all. David needs those around him, doctors, physical therapists, and family, to let him know when they see any progress as a reassurance to him that he is making progress.
David is very disciplined and motivated, a hard worker. He can and will do this. What was so important to us today was to find out there was yet strong possibility of this coming back. He had been beginning to feel that all this work was a waste of time at this point and that he was as far as he was going to get, so the hopefulness and information we got today is spurring him on to continue working and to work harder! He now knows it can pay off. In terms of other issues relating to sensation, it is too early to tell if he is in transition, and it is on it's way back to a more normal state or if it is at the place where it is going to stay. For instance, David expresses what he senses as his left side being turned inside out, that he feels inside his body what his skin used to feel on the outside and that the outside doesn't sense what it used to. He is both overly and underly sensitive.
She was very attentive to his desire to run long distance again and gave very good advice about that. She would like to see him have more therapy. We are over what insurance will cover in terms of stroke, but she suggested we approach it as a sports-therapy issue. He needs a therapist to work with him specifically on his stride while walking and running. If this does not take place, and if he tries to train to run, he will have orthopedic injuries. She explained in detail how he can tell when he has overdone it with exercise. Regardless of whether or not he runs races again, she let him know that he must exercise every day or he will lose what he has gained.
She also talked about causes of stroke and reminded us that although the PFO (hole in heart) is likely the cause, that is not certain. She recommends he have a blood test for hypercoagulation and that he wear a heart (event) monitor for 30 days. Her statement was that she'd be more comfortable with more testing. She'd like to see this done regardless of whether he goes back to running (in which case he should definitely have it to be cleared to exercise that vigorously). If nothing shows up in these tests, we can be even more sure it was the PFO (although we can never be 100% sure that that was the cause), and if something does show up - arrythmia or hypercoagulation, then we can do something about that and further lower his risk of future stroke.
David mentioned some of his emotional "down feeling" lately, and she said that this was the time most stroke patients are prone to depression (and when many give up and therefore make no more progress). This is because there is a steep recovery rate at first but that then a plateau is reached and the improvement is so subtle that the patient, who is living with this day to day and minute to minute, can't see that there is any improvement at all. David needs those around him, doctors, physical therapists, and family, to let him know when they see any progress as a reassurance to him that he is making progress.
ON BEING DAVID RIGHT NOW
In the post after the return from Washington DC I included a 6 month retrospective I included a lot about of what David feels like right now. I've also included some of it above - such as the foot pain and the "inside-out" feeling. Before I add to that, I want to state that there are a lot of things I did not know about what David is feeling until today. He is not a complainer and often doesn't even just mention things that he's struggling with. Both of us certainly know that there are people struggling with things far more difficult than our situation and that David's situation too could be a lot worse - he could have died - he could be permanently paralyzed - so we are tremendously thankful daily for what we have, which is a LOT. I know too from personal experience with a 4-year-long bout of severe depression, which I feared to make public at the time, that there are people suffering from health struggles that they dare not share and thus can't publish like we are doing here. Often when I write I say a prayer for people who are out there suffering silently and not in a position to experience the support that we have in this situation. So, we are thankful both for David's progress and for the ability to share this with others and to feel so supported. We certainly do not share this as complaint but rather as a record of David's/our experiences for our loved ones to read, and we hope it might also be of encouragement to others who might be experiencing something similar - letting them know they are not alone.
Along with what is in a former post and things mentioned earlier here, David also:
- cannot get things out of his pocket with his left hand
- cannot easily lock the doors at night (hard to turn the lock)
- finds himself crossing his arms a lot b/c he wants to hold his left arm with his right
- stubs toes on his left foot when walking barefoot on carpet (and trips at times)
- feels like his left shoe is an "unleveled wooden shoe"
- experiences pain when walking barefoot on textured surfaces
- has a hard time balancing, and his left arm swings out of sync with his right
- feels skin sliding over his muscles when resting his left arm on the table
- often needs to first do with his right hand what he wants to do with his left so he can copy it
This Sunday he sang in front of church for the first time (at First Ripon CRC), and he found out that when he is nervous his left leg shakes uncontrollably. I may have shared these next things already, but he sort of starts over again every morning - staggers as he walks until he's been doing it for a while - and when he sneezes his left leg goes out of control (which is especially a bummer for him, because he has allergies, so he sneezes frequently!). Today as he was driving home from UCSF, he told me it hurt to put his left hand on the steering wheel and that in setting it there he could feel all the wrinkles in the skin of his hand and fingers.
FURTHER COMMENTS FROM HEIDI
What keeps coming to mind is how happy and thrilled I am about this appointment! It was so encouraging to both of us - especially so to David. It was also just very interesting. One of the most interesting things I saw as she was testing him is when she had him put both arms straight out in front of him, palms up and then close his eyes. As soon as he closed his eyes his left arm began raising up, and his left hand began turning inward, but his right arm and hand stayed right where they had been. He continues to not have perception of where his left arm and leg are situated, which is why he needs to look at everything he's doing with that left side. It was very interesting to watch and seemed kind of like magic - levitation or something.
We're not all that old (I don't think :-), but as we have journeyed through life we have experienced some significant health issues and seen friends and family members do so as well. I am so aware all the time now of the intricate system the human body is, and how if one tiny thing goes wrong so much can be altered so significantly. Even driving back and forth to San Francisco today in the midst of all that traffic, I was so aware that one little mistake by one driver could alter or end many other lives. Every breath we take, every moment we live, every thing that we can do - seeing, hearing, tying our shoes, buttoning our shirts, speaking, having sensation, lacking chronic pain, walking, knowing where our arm is when we close our eyes, being able to snuggle up under the covers without it causing pain - every seemingly miniscule thing is a gift every moment and is something that can be lost at any time. We should not take anything for granted, and all of us - even in the midst of injury and illness - have so much to be thankful for - so much more than we do know or can know!
I think I'll take some time tomorrow to go out in the back yard and enjoy my vision by looking at the green leaves and grass and at the blue of the sky - and enjoy my ability to breathe freely in the fresh air - and enjoy my ability to feel, and to do so without pain, by running my toes through the grass. Maybe I can get my hubby to join me so as to enjoy the ability to hear and to talk and to think and therefore to converse and to enjoy the fact that we still have each other!
Sunday, June 1, 2008
Upcoming Appointment
On Thursday, June 5, David and I will be heading to the Stroke Center at UCSF to talk with a neurovascular specialist. It is a 60 minute appointment, and we are not sure exactly what to expect. What we hope is that we will get information about what is yet possible in terms of David's recovery - hoping to hear further improvement is possible. We'd also like to make sure David hasn't missed out on anything he should have been doing (or perhaps can yet do) to maximize his recovery.
We know that people are different in how their bodies respond to health situations and that in medicine not much is absolutely definite, but we do keep hoping that what David was told initially may prove to be true - that he can recover 98% to 99% of his full function. Most of what is yet missing (or problematic) is not visible to others, but he feels and experiences the continuing impact daily in many non-visible ways.
One thing that has been confusing to us throughout this process is the varying "windows" David has been given as to when his chances for continued improvement end; they have varied from as little as 3 months to as much as 2 years (with others - very few - telling us there is a chance he can continue to improve indefinitely). Perhaps it is best not to be given a definitive window, and maybe there is no such thing, but that too is one of the questions we are going to ask. I imagine if there are answers to be had, this is where we will be able to get them, so we are very excited about the week.
We know that people are different in how their bodies respond to health situations and that in medicine not much is absolutely definite, but we do keep hoping that what David was told initially may prove to be true - that he can recover 98% to 99% of his full function. Most of what is yet missing (or problematic) is not visible to others, but he feels and experiences the continuing impact daily in many non-visible ways.
One thing that has been confusing to us throughout this process is the varying "windows" David has been given as to when his chances for continued improvement end; they have varied from as little as 3 months to as much as 2 years (with others - very few - telling us there is a chance he can continue to improve indefinitely). Perhaps it is best not to be given a definitive window, and maybe there is no such thing, but that too is one of the questions we are going to ask. I imagine if there are answers to be had, this is where we will be able to get them, so we are very excited about the week.
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