Thursday, November 21, 2013

Post 72 - The Results Are In.

My sleep study follow-up was yesterday and even though I have been told by my sleep partner that I probably have sleep apnea, I didn't expect the doctor to say "severe OSA" which stands for Obstructive Sleep Apnea. He proceeded to add Central Apnea, Sleep related Hypoxia and Restless Legs Syndrome to the diagnosis.

I won't bore you with the numbers but let me assure you that I am not thrilled. But maybe it is best to know so that we can now deal with a c-pap type machine at night..

Central Apnea is the main concern because breathing is disrupted regularly during sleep because of the way the brain functions. It is not that you cannot breathe (which is true in obstructive sleep apnea); rather, you do not try to breathe at all. The brain does not tell your muscles to breathe. This type of sleep apnea is usually associated with neurological diseases, such as Parkinson's disease, Alzheimer's disease, and  ALS ( Lou Gehrig's disease) and as we can see, MSA.

In very simplistic terms, Hypoxia is not enough oxygen getting to the brain causing confusion. Having only 84 % is cause for concern!

Our next step is an overnighter on November 28th.  This time the technician will be trying out several types of machines and calibrating them to my exact need all while I am suppose to sleep.

Wish me luck.  There definitely will be more to come.

Friday, November 8, 2013

Post 71 - The End Of A Busy Week

As mentioned in Blog entry #68, this week was chock-full of doctor visits, catheter changes, and assorted tests.  Everything was going along predictably until Wednesday night when the Sleep Study was held.

First, a little bit of history; the Sleep Study was ordered by my latest physician, a pulmonologist, whose technician performed what turned-out to be a normal Lung Function test a few days earlier. 

Next, the only test remaining which might determine the course of treatment for those nights when I act out or make strange noises is the innocent-sounding Sleep Study.

I appeared exactly as directed at 8:30 PM at the testing site, which happened to be at the rear of the doctor’s exam complex. The room looked reasonably comfortable.  Fran, my wife, caretaker and chauffer, accompanied me as well, in case my suprapubic catheter, or me, in general, needed attention. She got to sleep in a recliner while I, the subject, slept, or tried to sleep in a Murphy Bed-like set up.

We were met by a helpful technician who immediately hooked me up to twenty-four EKG-like sensors from the bottom of my legs to the top of my head and then tells me to “go to sleep.” It reminded me of a trip to the dentist where your mouth gets stuffed with about ten tubes and the dentist wants to carry on a conversation.  How does he expect me to fall asleep all wired up like this?

Both of us must have eventually fallen asleep because the technician sticks his head in the door to announce its six o’clock and time to get up.  He then proceeds to remove the twenty-four sensors, leaving behind some adhesive as a souvenir of my visit.

          It was too early for our regular breakfast spot, so we found someplace open instead.  Turns out they make pancakes the size of Frisbees.  What a strange experience!  Now I‘ll have to wait until Nov 20th for the results.


Monday, November 4, 2013

Post 70 - Isn't This A Pain In The #%&*

First, let me apologize to the many nice people who have left messages or comments in the past few weeks.  Please do not think I have ignored you. Very much to the contrary, I open and read all comments.  Just when I had it figured out, Google went and changed a few things on their blog page (for my convenience).  I think I finally have these new changes figured out but I can always be reached at

Now for the matter at hand; aside from the usual aches and pains of growing older (I’m speaking about arthritis which flares up every morning but can usually be massaged or medicated away by noon), I feel fortunate in never having to bore my readers with comments about MSA related pain. Fortunate because until about three weeks ago there was no pain associated with my symptoms.  Plenty of other things were wrong, like loss of balance or speech – but no pain.  I used to be able to say that – but no longer.

A few weeks ago, I developed an annoying pain on the inside of my knees, mostly the
right one but occasionally the left one as well.  The pain is at it’s worse when I am
transferring from one chair to another.  On those occasions my hips decide to join in and
hurt as well.  I am also experiencing these pains and sensations when in bed.

I only hope it doesn’t progress any further.