This Message is from May 14, 2008
Dear family and friends,
I've got some pretty fascinating news but first A REQUEST. This coming Monday, May 19th, is Danny's 23rd birthday. If you can, try to email him a birthday greeting. You can keep it brief- just a quick happy birthday, and your name and location.
Send it anytime in the next week or so. (It's good if they don't come all at once on Monday.) Last year I made a similar request and Danny got over 350 birthday messages from all over the country and all over the world. He clearly enjoyed having them read to him each morning as they came in. It was a good reminder to him, and to us, that we're all connected and that one young man can unite so many in love, prayer and positive thoughts.
Now for the news: I'm sitting at Danny's feet typing this while he is propped upright on his tilt table. He's sleeping with his head perfectly centered. Just over two weeks ago, his joints became very flexible.
It was pretty startling how suddenly it occurred. Whereas he used to be rigid and tensed much of the time, now when we lift his leg, his knee bends naturally. When we turn him on his side, he pulls his knees up on his own.
It's easy for us to move his arms (making showering much less strenuous). It used to be that even touching his right hand would cause him to clench with tone. Now we can hold his hand no problem, and it's easier and easier to straighten his fingers.
There is a flip side to this: on the therapy table, he is not moving his left arm to answer questions or spell words as deliberately as in the past. When asked a math problem or Yes-No question, it takes him much longer to respond. It's been suggested that maybe he used to somehow employ the tone and spasticity to good effect to direct his hand and now, as his movements become more natural he needs to relearn how to move.
In support of this theory, in therapy the other day, we noticed that he favored his right hand when playing blackjack. He is right-handed but had always used his left hand because he had a lot more tone and spasticity on his right side, but as that toning seems to be abating, he's using his right hand more.
He's been sleeping much more and much deeper than before. He has also been moving his head quite a bit on his own, even lifting his head slightly, on request, while on the therapy table. And whether on the table, in bed or in his chair, he's relaxed most of the time, no longer grimacing in pain and going rigid with discomfort.
We have no real explanation for these changes but the improvements seem to date to when our friend Carey Meredith increased Danny's Feldenkrais therapy from once to three times a week. In addition, right around that time, our friend Michalene Seiler, a homeopathic physician, sent us a remedy for spasticity. Whatever the reason, we're grateful for the developments, and for the efforts of all our friends.
Also puzzling: Danny's pulse has been high- around 112 beats per minute even when sleeping and never under 100 since we took notice several days ago (we hadn't checked his pulse in a while but it always used to be in the normal 70-80 range).
Redness around the site of his feeding tube prompted a visit to the gastroenterologist who prescribed an anti-biotic. Could the infection have something to do with the elevated pulse rate and the increased sleep?
Penny came ten days ago with the EEG machine and found that while his theta wave frequency was unfortunately higher than before, the good news was that the faster beta waves were also at a higher frequency, which means that he is far from unconscious but is very sleepy. Early on we were told that in brain injuries, sleeping is often healing. Let's hope.
When awake, Danny continues to work out on the Brainfingers machine. You may recall how I described that, through a headband's sensor, he can cause musical notes to play by tensing and relaxing his facial muscles. A few weeks ago, his friend Sherif came over, found the right key, and played rhythm guitar while Danny played on the machine. Sherif and Danny first started writing music together in sixth grade, so it was very emotional for Lynn and me to watch them collaborate again. (See the photo attached below.)
May 12th marked two years since we brought Danny home from CareMeridian. It's been an amazing ride- the most profound and rewarding experience of our lives. Thanks for coming along with us. And thanks for sending birthday greetings to our boy.
With love to you all, Jeff
Attached are three photos of:
1) Danny playing music on the Brainfingers machine accompanied by Sherif on guitar. (4/24/08)
2) Danny and our friend Keenan Williams after a hard-fought game of blackjack. (5/12/08)
3) Danny asleep in his wheelchair, head centered, arms relaxed. This was taken just a few minutes ago (5/14/08).
to write to Jeff: manonash@verizon.net
to write to Lynn: lynnswan7@verizon.net
for mailing list issues (Mitchell Rose): dannymagnews@gmail.com
to view previous updates: http://groups-beta.google.com/group/dannynews
to automatically unsubscribe, send email to dannynews-unsubscribe@googlegroups.com
Dear family and friends,
I've got some pretty fascinating news but first A REQUEST. This coming Monday, May 19th, is Danny's 23rd birthday. If you can, try to email him a birthday greeting. You can keep it brief- just a quick happy birthday, and your name and location.
Send it anytime in the next week or so. (It's good if they don't come all at once on Monday.) Last year I made a similar request and Danny got over 350 birthday messages from all over the country and all over the world. He clearly enjoyed having them read to him each morning as they came in. It was a good reminder to him, and to us, that we're all connected and that one young man can unite so many in love, prayer and positive thoughts.
Now for the news: I'm sitting at Danny's feet typing this while he is propped upright on his tilt table. He's sleeping with his head perfectly centered. Just over two weeks ago, his joints became very flexible.
It was pretty startling how suddenly it occurred. Whereas he used to be rigid and tensed much of the time, now when we lift his leg, his knee bends naturally. When we turn him on his side, he pulls his knees up on his own.
It's easy for us to move his arms (making showering much less strenuous). It used to be that even touching his right hand would cause him to clench with tone. Now we can hold his hand no problem, and it's easier and easier to straighten his fingers.
There is a flip side to this: on the therapy table, he is not moving his left arm to answer questions or spell words as deliberately as in the past. When asked a math problem or Yes-No question, it takes him much longer to respond. It's been suggested that maybe he used to somehow employ the tone and spasticity to good effect to direct his hand and now, as his movements become more natural he needs to relearn how to move.
In support of this theory, in therapy the other day, we noticed that he favored his right hand when playing blackjack. He is right-handed but had always used his left hand because he had a lot more tone and spasticity on his right side, but as that toning seems to be abating, he's using his right hand more.
He's been sleeping much more and much deeper than before. He has also been moving his head quite a bit on his own, even lifting his head slightly, on request, while on the therapy table. And whether on the table, in bed or in his chair, he's relaxed most of the time, no longer grimacing in pain and going rigid with discomfort.
We have no real explanation for these changes but the improvements seem to date to when our friend Carey Meredith increased Danny's Feldenkrais therapy from once to three times a week. In addition, right around that time, our friend Michalene Seiler, a homeopathic physician, sent us a remedy for spasticity. Whatever the reason, we're grateful for the developments, and for the efforts of all our friends.
Also puzzling: Danny's pulse has been high- around 112 beats per minute even when sleeping and never under 100 since we took notice several days ago (we hadn't checked his pulse in a while but it always used to be in the normal 70-80 range).
Redness around the site of his feeding tube prompted a visit to the gastroenterologist who prescribed an anti-biotic. Could the infection have something to do with the elevated pulse rate and the increased sleep?
Penny came ten days ago with the EEG machine and found that while his theta wave frequency was unfortunately higher than before, the good news was that the faster beta waves were also at a higher frequency, which means that he is far from unconscious but is very sleepy. Early on we were told that in brain injuries, sleeping is often healing. Let's hope.
When awake, Danny continues to work out on the Brainfingers machine. You may recall how I described that, through a headband's sensor, he can cause musical notes to play by tensing and relaxing his facial muscles. A few weeks ago, his friend Sherif came over, found the right key, and played rhythm guitar while Danny played on the machine. Sherif and Danny first started writing music together in sixth grade, so it was very emotional for Lynn and me to watch them collaborate again. (See the photo attached below.)
May 12th marked two years since we brought Danny home from CareMeridian. It's been an amazing ride- the most profound and rewarding experience of our lives. Thanks for coming along with us. And thanks for sending birthday greetings to our boy.
With love to you all, Jeff
Attached are three photos of:
1) Danny playing music on the Brainfingers machine accompanied by Sherif on guitar. (4/24/08)
2) Danny and our friend Keenan Williams after a hard-fought game of blackjack. (5/12/08)
3) Danny asleep in his wheelchair, head centered, arms relaxed. This was taken just a few minutes ago (5/14/08).
to write to Jeff: manonash@verizon.net
to write to Lynn: lynnswan7@verizon.net
for mailing list issues (Mitchell Rose): dannymagnews@gmail.com
to view previous updates: http://groups-beta.google.com/group/dannynews
to automatically unsubscribe, send email to dannynews-unsubscribe@googlegroups.com
