Me on the PatientsLikeMe Newsletter
Yesterday I got a really awesome E-Mail, it was the PatientsLikeMe ALS newsletter for September 2009. My part starts on page 2 of the newsletter. click the picture above for the PDF version of the newsletter that was sent to me.
September 14-15 were not recorded. Recording resumed the 16h. I will be recording today the 17th.
The belt and the necklace
A good friend of mine named Jessica living in Ireland sent me a package yesterday. I opened it up and inside was a 3″ wide white leather corset belt, I am a big fan of these, they are real comfortable. This one actually fits my body pretty well. She included a silver necklace with an interesting marbly glass disc thingy that I like rubbing on my chin. I took a big video and lots of photos. Click above for photos
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Two days ago we went to the ENT specialist and he said a tracheostomy is possibly in the deck of cards somewhere. We need more testing to determine if i need it NOW or if I need some other management.
We have a sleep study coming up
Oximetry exception – September 13th 2009, did not start recorder successfully / CORRUPT DATA
September 14th returned to normal recording.
we are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.
A few days ago I had the honor of unboxing a promo disk and theremin sent by music artist Moldover who specializes in what I like to call Electronica, Electro-Junk (Jazz/Funk) And Electro-Punk. All in all the whole album is something to love and keep on your iPod (or Zune for you Microsoft people) But the true beauty and splendor of this release lies not within the disk its self but with the printing on the disk and what the disk rests in, it’s not a normal jewel case. The jewel case contains a LIVE WORKING CIRCUIT BOARD THEREMIN, that functions based on light and proximity sensors, I suck at playing it but will get better, anyway see below for a unboxing video and demo track and demo of the teremin. It’s all available at Moldover’s website for $50 dollars to get a full album AND a real theremin, WITH REPLACABLE BATTERY AND HEADPHONE OUTPUT!
P.S Yes, I got paid to do this post, in the form of the free CD and theremin.
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The oximetry report for 9/12/09 was not released due to the fact my sleep was so busted I did not get to sleep till 6:00 AM, tonight I got the oximeter recording EARLY so I will just clip the stuff of me not sleeping and crop it.
Also I am reiterating that TOMORROW is my ENT visit with the Ear Nose Throat surgeon, POSSIBLE tracheostomy.
Yawn looks like another night for suckish sleep. Just wanted to let you all know I am still alive and kicking, and I kicked out another oximetry report and will kick another one tomorrow.
Yawn, goodnight everyone!
Nightly Oximeter Reports Page
The following dates have no oximetry reports, the reason is recorded to the right of the date.
09/08/09 – fell asleep before recorder button was pressed
09/09/09 – forgot to hook up to oximeter all together
09/10/09 – Report was taken but only lasted 4 hours and contained unusable data, report was thrown out
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My pulmonary specialist’s nurse called me today to check up on how things are doing. Better, but not totally out of the woods. The doctor does NOT recommend a tracheostomy be done at this time. This is a good thing in many ways but in some ways it is a disadvantage, the most obvious of the disadvantages is more limited airway clearance and management. There are a few others but that is the most obvious and most crucial. Right now airway clearance and management consist of Albuterol inhaler or nebulizer and a Cough Assist Machine (In-Exsufflator) they work pretty well, but for stuff that is well lodged down there or is right at my trachea and won’t move they don’t get the job done. Therefore the pulmonary nurse said we should still go to the ENT surgeon anyway to see what solutions he can develop for us.
Main goal in airway management and clearance is Preventing asthma / airway attacks and recurring infections.
The Tracheostomy has been deleted from the pending order area as it will be more than 6 months probably.
we are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.
we are also waiting on a few other things to be ordered after the completion of these, the next order batch is. All of the below are considered dead until converted to live orders.
Nightly Oximeter Reports Page
Like UPS has delivery exception notification I decided that I am not going to blog every time I “deliver” an oximeter report. But I did decide that delivery exceptions / problems should be blogged. Last night I was so tired that I practically passed out at the computer and I did not turn on the oximeters recorder. thus there is no report.
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