Post 75 - Odds and Ends (no pun intended)

It has been a while, so I (Fran) thought I would let everyone know that the Bi-Pap machine is doing it's job.  The technician decided we needed a new machine. It took a while for the supply company, technician, and doctor to get on the same page but finally tweaking some numbers solved the problems.  I think it took so long because I was trying to be nice and not my usual impatient self. Well sometimes vinegar works better than sugar.  Yes, the alarm still goes off but only several times a night. Steve is getting a restful sleep and wakes up refreshed.  He will be trying a new full face mask in April because the smaller mask irritates the bridge of his nose.
For those who asked, the machine itself is whisper soft. If you use an older machine and it is noisy,  get yourself a newer model.

Life never stays uneventful for long.  For several days Steve complained of an odd sensation on one side of his buttocks. He was worried he was developing a bed sore.

So what did it turn out to be......SHINGLES!  On day 3 I could see the signs of small blisters in a linear pattern.  We went immediately to the doctor.  Funny thing is that Steve had the shingles vaccination three years ago.  We are finding out that it is only 67% effective.  Between the vaccination and the prompt dosing of an anti viral drug he has a mild case.  Thank goodness. Hopefully it will be all cleared up by our next posting.

Some good news is that the FDA has finally approved the drug droxidopa.  This drug has been used successfully in Japan for decades for orthostatic hypotension.
People with OH have a sudden severe drop of  blood pressure when they stand up, causing dizziness and sometimes fainting. It will be available in 6 months.  We will see our GP about this.  If he does not agree to prescribe and monitor it then we will  have to deal with our neurologist. We will keep you posted.

We hope you are all seeing some signs of Sping wherever you may be.

Fran and Steve.

Post 74 - A Note from Fran

Several of our friends have been inquiring as to how Steve is doing with his new Bi-Pap machine. I've decided to post an entry to let you know about our trials and tribulations with this BOX.
Eventually it's going to be good, but until then, it has been frustrating and I am completely sleep deprived.  The machine has a modem and SIM card so that the doctor and Medicare can read the results. The doctor wants to make sure it is working and Medicare wants to make sure that Steve really needs this expensive gadget.  According to the technician that has come to the house twice now, this high tech machine is learning Steve's sleeping and breathing patterns ???? 

Steve has obstructive apnea and also the more dangerous type called Central Apnea.  The brain of an MSA patient neglects to tell the lungs to push air out to start breathing when sleeping.  This machine is suppose to "read" this and push a bigger burst of air out of his lungs. ( I think, or at least this is what I understand). This very smart machine has an alarm to warn you that you are having an apnea episode.  The technician neglected to tell us about this alarm.  The first night when this alarm sounded I jumped out of bed thinking the condo fire alarm went off. It then proceeded to go off another dozen times that night and every night thereafter.  Steve has learned to reach over and silence it. If he doesn't then I get up and gently wake him.  BUT remember this machine has it's own brain and agenda.  It only stays quiet for 90 seconds and then automatically re-activates itself.

I will regress to tell you we go to bed earlier because it takes time to get the straps, mask and tubing attached and plugged in correctly.  There is a small humidifier inside this box that gets filled with distilled water every night. Every morning the mask, tubing and filter has to be washed and dried.

I hope this does not sound as if I am complaining because nothing is further from the truth.  I am thankful that all these medical advances are available to us.

Steve is still in good spirits but he is getting more tired and exhausted with time. Our Christmas was delightful with our children here  but it took a toll on him.  He has not wanted to go out to a restaurant now for over a month.

Hopefully he will be in good form soon and write the next post himself.

Post 73 - Finally!

After weeks of waiting, I finally have taken possession of a sleep machine; specifically called a BiPA autoSV Advanced System One by Philips or, as it’s more commonly known, a new version of a BiPAP machine which blows a steady stream of air into the sleeping victim, er, I mean patient. The delay, I have since learned was due to the senior doctor taking an abrupt leave of absence, the closing of one of two offices, the re-organization of the remaining three doctors into a new group, and the failure of my doctor to completely fill out my correct machine orders. And the Holidays. Other than that, no problem!

 

Wait – there is one slight problem. Do they really expect you to sleep soundly with both a chinstrap to keep your mouth closed and a bunch of straps to hold the mask in place? Looks like I’ll need another visit from the talkative technician to show me how to make this thing work as intended.

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.

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 20^th for the results.

 

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 ssteidel@comcast.net

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.

Post 69 – It’s Gonna Be a Busy Couple of Weeks

Most weeks go by with nothing going on. Time to sit around and read or to catch up on messages from good friends who genuinely care about my condition.  These coming weeks, however, promise to be anything but routine and quiet.

First, on Tuesday, comes a regular quarterly visit with my GP. The biggest change since my last visit involves pain in my hips & knees when any pressure is applied (like changing chairs or getting into or out of bed).  I’ll also tell him that these “pain and stiffness” episodes seem to coincide with my taking the anti-infection drug Cipro every time my supra-pubic catheter is changed by the visiting nurse.   I will also mention an overabundance of saliva when not called for or expected.

 And I’ll tell him about my upcoming visit to a pulmonologist specializing in sleep disorders to learn the results of my recent pulmonary function test to determine why I act out during sleep and to assess my laryngeal stridor.  After this battery of tests I should have more information.

** This blog post was typed by my daughter Debra who is visiting.