Friday, October 28, 2005

New Yorker article

There's a fantastic article on aphasia by neurologist Oliver Sacks in this week's (Oct. 31) New Yorker. Unfortunately, the article is not in the magazine's online edition, but it should be available at most decent libraries.

The article discusses the isolation that aphasia patients can sometimes feel, as well as discussing the ways that they are able to both recover from and work around their aphasia:

"Many [aphasia] patients develop a remarkable compensatory heightening of other, non-linguistic powers and skills, especially the ability to 'read' other's intentions and meanings from their facial expressions, vocal inflections, and tone of voice as well as all the gestures, postures, and minute movements that normally accompany speech. Such compensation may give surprising powers to aphasics--in particular, an enhanced ability to see through histrionic artifice, equivocation, or lying...

"It is often said that after a stroke or a brain injury whatever recovery is possible will occur within twelve to eighteen months. While this may often be so, I have seen this generalization proved false in many individual patients. And in the past few decades neuroscience has shown what physicians have often observed: that, provided the initial damage is not too great, the brain has more powers of repair and regeneration than was formerly believed."

The article also echoes Melinda's observations about the value of singing for aphasia patients:

"Music therapy is invaluable for some patients with expressive aphasia, who, finding they can sing the words to a song, are reassured that language is not wholly lost, that they still have access to words somewhere inside them."

Very interesting stuff.

Iggy, Teri and I went to see Steve earlier this week. It seems like every time we see him, he's physically stronger and knows a few more words. Siobhan's comment in her post about his falls made me feel very guilty, though, because while we were there, Steve wanted to get out of his wheelchair and back in bed. We waited for the nurse for a while to assist with this, but then Steve got impatient and somehow convinced us to just help him do it ourselves, even though none of us knew what we were doing! Luckily, he was fine...I guess it's a good thing that he's anxious to be independent, but now I feel like it was a stupid thing for us to do!


Steve's discharge date from the rehab hospital is moved to Nov. 18 now, but still subject to change. He is in such good spirits most of the time, but he has had a couple of falls now while trying to transfer himself from the wheelchair. No apparent injuries but scary!! We'll check on him later!!

Saturday, October 22, 2005

meow meow and news

I hung out with Steve last night and we went outside for a while to get fresh air, and this adorable kitty cat came and hung out with us....he/she let me put her up on the tray that is on Steve's wheelchair and she was lolling about and rubbing up all over him! IT was really sweet, he loves cats and petting animals is therapeutic also. He was wheeling himself in the wheelchair, I just walked along side and helped him out of the elevator but he did the rest. His cousin told me that they had a very long day at Highland on Fri. and the surgery is postponed until Nov. 17 now. The family is asking for an extension on the stay at Fairmont rehab so that he'd return there after the surgery to recup and then go home from there. Keep your fingers crossed for an approval on that. Steve is almost able to transfer himself from the chair to bed but needs a bit of stand by assist. - he probably could get in/out of a regular car too. I brought in a virtual ping pong game that hooks up to the tv so I will try to get that set up tomorrow - it looks cool and good for hand-eye coordination and stimulation of the brain. It is hard to leave, as he doesn't want you to go - last night he actually went back to the elevator, pressed the button and got in it while I was telling him that I had to leave. So we went back downstairs and we went down the hall to where the speech therapy is held. When he realized everyone was gone for the day I think that helped to know it was a good time to back to his room and rest.

Thursday, October 20, 2005

Please Press On and Sing

Its been a few days since steve got his first needling. His father, cousin Sheila and I were there for support. He was in a good mood and quite into getting the help from Jacques the acup. Jacques has worked with stroke recovery before so it seemed quite natural for him. Steve expressed to Sheila and I that he felt more energy in his body. About 20 min. after Jacques left Steve tried to sit himself up higher in the bed and I saw his right hand move to push his body up. It lasted for a while then stopped when he did. This is so great and evident that it works!

Unfortunately, the risk management folks at the hospital have had second thoughts and pulled the plug on more acup. visits. While Steve is there they refuse to give this to him. BUT! If anyone out would like to know how to give steve acupressure please contact me at and I will guide you through some simple steps.

I will send a chart of points from the acup. to hold and what they do. We can put up on the wall near his bed. Everyday counts. They say after six months whatever he gets back is probably all he will get. This is probable outcome not definite.
So let's press on.

On a lighter note....I listened to some music with steve monday night and sang occasionally to the music. When it came to a song he's heard alot he sang part of it to me. Crystal clear! It was awesome. One of the nurses was telling me that singing can help recovery from aphasia. I think she's right. So don't be shy.

thank you all

I wanted to thank the bands 3 Weeks Clean, Laudanum, and Kalas for playing last night and sounding great! also thank you to everyone that came out to the show and to Jay for organizing it and doing all that work on it. All funds will be going toward a "gift" for our friend Steve which we can decide upon as he gets ready for discharge from the rehab hospital - tentatively scheduled for Nov. 11. He has a pre-op appointment with the neurosurgeon at Highland hospital tomorrow and then I think surgery likely next week for the craniotomy skull flap replacement. If he then does get discharged Nov. 11 he will be going home but will need home modifications for wheelchair and accessibility as well as in home health services for his Activities of daily living (bathing, dressing, transportation, transfers, meals etc.) He will probably be looking for a caregiver who could be his employee and get paid by IHSS (county) - so keep it in mind. He could have more than one person split the hours also.
More updates as I get them. LOVE TO ALL of you

Wednesday, October 19, 2005

show tonight call everyone you know

Sunday, October 16, 2005

the show is Wed. 10/19

for some reason it has been confusing what night the benefit is...WEDNESDAY Oct. 19 - just in case anyone has the wrong date! OK FRIENDS? See you there!

Friday, October 14, 2005

Steve visits this Saturday & Sunday

ok people I finally got an appointment scheduled with the acupuncturist for sunday morning early so I am amending my request for steve visits. It would be best if folks let him rest saturday night and sunday morning and came to visit him after 1pm on sunday.

thanks again!

reminder of a gift

Thursday, October 13, 2005

today we went for a spin! woo!

today (thurs.), the second i came in the door, steve propped himself up all by himself and made it clear he wanted to go OUT. he was getting frustrated because i wasn't getting it that he wanted to get into the wheelchair and go outside. he was all smiles and he looks great. i told the nurse that i thought he wanted to go out, so she helped him into his chair, (he is able to help himself to a certain extent moving around). as we were approaching the sliding doors to go outside, he kept saying "oh, man, oh, man" and then "yay!" when we made it out into the sunshine. after i pushed him up the hill, he pointed out which direction he wanted to go and at one point i had to turn back because i felt that it was getting too steep, i was afraid i wouldn't be able to control the chair on the way down. there are lots of bumps and cracks and i was scared of pitching him out. as we came back down the hill, steve kept going "woo!" and i felt bad i couldn't go faster. when we went over the bumps and cracks he said "whoa, whoa!". when we got back to the room, it seemed like his spin had taken it out of him a bit, one nurse told me he has neck pain. after he was back in bed, he moved his stuff around and indicated that i should sit on the bed. he really likes hugs and holding yer hand. he gave me a big hug when i left. it is so great to see him moving around so much, and propping himself up with his right arm, even though he can't use his hand yet.

Wednesday, October 12, 2005

acupuncture sunday

Hi Folks. Just wanted to let you all know that we are coordinating with the family to have steve try to get a treatment on sunday. We made a first attempt last sunday and he was way too exhausted to participate. He has expressed a clear desire and actual enthusiasm to do the acupuncture, however he had too many visitors last sunday and could barely open his eyes to meet with the doctor. He did a brief assessment and initial intake with steve and they both got along well. However, when he comes out to the hospital again IF steve can't participate again he said he won't come back. So it would be great if any visits on sunday could happen after 5pm. Thanks everyone.

just for STEVE

"F - yeah"

I was visiting last night with Melinda and decided to make a protein shake - whey protein powder that tastes like vanilla in Steve's milk carton with dinner. If people are visiting at dinner time, you can put a scoop of that in the milk and mix it up, super nutritious and low fat too! ANYWAY Melinda brought some California rolls and when Steve ate some sushi and then drank that milk shake he was so into it that he said "fuck yeah". It was such a profound moment! Also the nurse asked if he'd try his pills whole now, instead of crushed and he agreed and then took the medications without hesitation. He so far has had them crushed and hasn't liked taking them; maybe the taste is so bad that they're this was also a big deal. He wanted to introduce the nurse to us I think, and also he tried to ask us to pull up a chair and sit we're learning to decipher better what he's trying to say. Hopefully he'll be starting the acupuncture on Sunday afternoon.

Saturday, October 08, 2005


UPCOMING SHOW at the OAKLAND METRO, shirts will be available there too. See flyer for details on the show
Steve will be starting some acupuncture very soon and some of the money raised will help to pay for has been shown to really help stroke patients so thanks to all that have donated and bands who've played and are going to play and to Mitch and Rotten Cotten and Apparel Source for their very kind contributions of shirts and labor.

Wednesday, October 05, 2005

dreaming of Steve

I will update more later on my visit last night but I dreamed all night about Steve. The details are sketchy.
But he was enjoying a skateboarding video when I left the hospital last night. It was like a film/music video/skate video which was cool. I will try to bring more like that. More later on specifics. He is trying to talk a lot.