Thursday, May 6, 2010

Scenes on the way to Sleep Study appt.

Quick notes

I have written down a few notes of things I want to publish here, but never seem to get around to doing. So, here are a few of them in random order, for whatever they are worth.

It was while I was sitting in the waiting room awaiting my consult with my new NSG that I read in a neurological magazine about tau. I will not try to explain anything about tau here, but I trust the reader will do so for him/herself if they are intrigued.

I read that the presence of tau in the cerebral spinal fluid (CSF) indicates traumatic brain damage.

This can be relevant for the patient who has suffered a concussion or brain injury, yet the MRIs are not showing any (or enough) lesions to impress the doctors. If you are up for a lumbar puncture and if the doctor would okay this test, and if tau is found, it can be the evidence you need.

But, keep in mind that LPs for many people are a risk, especially if you have arachnoiditis or Chiari Malformation. Check with your doctor.

I have stumbled upon the best home-vacuum for someone who has weight-lifting restrictions. The name of the vac is LiNK cordless by Hoover. It comes with a lithium battery, and has suction that outperforms any other vacuum I have tried. The battery lasts long enough to do a full room or two, so it's not for someone who is professionally housecleaning. However, for those of us with disabilities, we should probably be resting between rooms as we vacuum anyway. If you are like me, I vacuum one room, then leave the vac waiting in the next room until I have the energy or "spoons" ( ) to do more, which means the vacuum sits in that room for two weeks or a month!

This vacuum doesn't use bags so you don't have to purchase those. It has a plastic cone that creates a tornado of suction that fills the clear plastic cup quickly of debris and dirt, pet hair, etc, from your carpet or rugs. You don't have to touch the stuff to dump it into the trash either, you just hold it over the trash can and press a button and the contents spill out into the trash. I love it!

No cord to mess with so you don't have to bend over to plug into outlets. The appliance is relatively light in weight. I think it'd make a great gift for an elderly loved one, or someone who is disabled. The cost, I believe, was about $130-150 retail.


A blog reader and e-friend sent me a great book, titled The Bear's Embrace; A story of survival written by the late Patricia Van Tighem.

Do you know of someone who has experienced a "near-death" experience? Or perhaps you have, yourself? Look for this book on the internet. It has been re-printed many times with various covers, I noticed. It's a fascinating read especially for someone who has suffered Post Traumatic Stress Disorder.

As Ms Van Tighem wrote and described her symptoms after the vicious attack by a grizzly bear while she and her husband hiked in Canada, I knew before she related the tales of the eventual diagnosis by her doctors that the author was suffering from PTSD.

This is a tragic tale, especially if you find out (as I did, later, when I looked up the author on the web) that eventually, Ms. Van Tighem committed suicide due to her condition 7 years, I believe, after the bear attack.

This is a great book for family and friends who believe that once a person has gone a certain time after his or her "near death" event, they should pick themselves up by their bootstraps and move on. They should "get over it!" This book emotionally and graphically tells the tale of our struggles with the mind.

If you are the PTSD-sufferer, then this book will put into words your story.

And, if nothing else, it's simply a great read!

Thanks, Lisa!

Also related to this topic is a thought I had and wrote on my list of things to add to this blog.
The thought came to me, after reading the above book, of the fact that when cougars, big cats of all kinds, bears and wolves go "for the kill," they most often go for the skull base area. The back of the head.

I have so often felt and oft-mentioned to people that I believe that region to be the center of all life in the body. Injuries there can and do affect every part of the body and all systems. (Often, less-than-knowledgeable doctors will say that injuries in that area cannot cause symptoms in the lower extremities, but they are wrong. My new NSG ... or I should say "ex-new-NSG" said the same thing to me...and he is wrong. I have read medical articles that state if someone has injuries high enough up in the Cspine, they will cause "below the waist" symptoms...and I know it from my own experience.)

The wild predators of this world know where the source of life is within the bodies of their prey. And we can take that to the bank.

Another note I made while sitting in the waiting room for my NSG (he was four hours late for my appt that time due to an emergency surgery) came from reading another short piece in Neurology Now, I believe.

It spoke to those of us with skull base issues (ie Chiari Malformation or someone with cranial settling, cranio-cervical instability, retroflexed odontoid, basilar invagination, traumatic injuries to the area) stating the importance of not-trying to get the last sip from a bottle or soda can.

Lifting your head up and back is exactly what you should not do if you have skull base issues.

Rather, use a straw to get that last sip, or forego the delectable pleasure of stealing that last, delicious sip!


When I got my dog, Mickey, I was driven north to a town 80 miles away for an appointment with an orthotist, to get my new (at the time) CTO (cervical thoracic orthotic) (or "big honkin' brace"). I asked before I went (who drove patients to doctor appointments for the county) if it would be possible for me to carry home a rescue-dog that the shelter volunteer would bring to the doctor's parking lot.

I was told that it was against policy for the driver to take a patient anywhere except to the actual doctor appointment, and that pets were not allow. However if it was to be a service-dog, then it would be allowed.

The kind lady on the phone (ours being a small and scarcely-populated county) told me, "I'm sure that new dog qualifies as a service dog in some way! Yes, we can do it!"

I've had that dog for two years now and he's been such a blessing to me. Heck yes, he's my service dog! He follows me everywhere I go, from room to room. I simply cannot go from a room without him at my heels, even two years after we picked him up.

I blogged about this when I first got him, but to refresh, this dog had been left in an orchard after the fruit pickers had moved on. When found, he had a scar almost all the way around his neck/throat. Most likely, someone had neglected to exchange a too-small collar for a larger one as the dog began to grow too big for the puppy-sized one. That's my guess, anyway. He has a white-hair line around his throat to remind me, but I doubt he remembers. He's the most forgiving and loving dog I've ever had.

Mickey is a standard-sized Dachshund, and people who see him often remark they've never seen one like him. Most people think of Dachshunds as the miniatures most often seen these days. Mickey weighs 35 lbs. and is black and tan in color. I think he's the most handsome thing going!

When I lie down for my naps each day, Mickey is instantly at my side. He crawls under the covers and stretches out and places his warm body all along my back or side. This is so comforting, I can't describe it! Often, my pain is centered at the small of my back, where I had the tethered cord surgery, and Mickey seems to instinctively know that.

Yes, he's my service dog. He's smart enough he'd do anything I might have the energy and strength to train him to do. That, however, is the rub! But what he knows and shows that comes straight from his loyal heart is "just what the doctor ordered!"

random updates

I need to get updates on here, but being at the computer has become more and more painful.
So, I will just copy/paste a note in here that I just rushed off to my sister. It won't be very prettily-written, but it is an update of sorts.
Being on the computer just seems so much harder than it used to. My husband has suggested a laptop, too...but I think looking down at the screen and typing with arms moving will be hard no matter where I'm at. But in the future, that might be something I'd like to look into.

I thought that the atty was talking like he'd get me anything to make my life better, after they found me 100% disabled, but I sent in a scooter proposal and have heard nothing yet. I wished I had had one when we went to the car show in town a couple of Saturdays ago!

Let's see...I went for the sleep study a week ago, last Thurs night. The tech gal told me I do have apnea, both central and obstructive. I go back to talk to the sleep doctor when I get back from AK.

I was surprised to hear them say I do have apnea since these tests always seem to show up with nothing. I guess that proves the brainstem compression that [the new NSG] denies I have. And Dr. Shelat in NY showed us very clearly on the MRIs...

Friday, [my husband] picked me up early at the hospital and we went home and I think I went right to bed.

I think the weekend was uneventful, I can't remember any of it now.

Monday, both [my husband] and I went to our primary to get new RX for our pain meds since we'll be getting back after the RX runs out.

We went to town yesterday to fill the RX, and met with opposition because we were told it was too early to fill it, insurance wouldn't allow it. We went to our reg. pharmacy and they were willing to fill one. So it goes.

It was sooooo windy and stormy all weekend and then yesterday too, big black storm clouds all across the plains and occasional squalls we drove thru.

The hills are lovely and green and covered with flowers!!