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.

Sunday, October 20, 2013

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.

Saturday, September 14, 2013

Post 68 - My Turn

I guess it's my turn to write. 

Steve is ok.  It's just that it takes him so long to type that he gives up.  He has emailed several friends this past week. Short notes that took him the better part of the day.

We have had several new developments.
We finally were able to get a hospital bed.  Medicare is strict especially when you have an honest doctor.  The bed is not for the convenience of the caregiver but for the need of the patient. 

The other development is what qualifies him to get the bed. 
In the later stages of MSA a problem develops with breathing while sleeping. It is called Nocturnal Laryngeal Stridor.

What is happening is that his larynx cannot close and open correctly
(partial paralysis) and the air gets trapped going in with a wheezing sound and then bursts out with a graspy sound. Seems that it is a common occurrence with MSA.  Soooo, nighttime is not fun.  The second I hear him start making an odd noise I wake him up.  This happens about 5 times a night. Oddly, there are some nights that it doesn't happen at all.

We are waiting for a scheduling of a sleep study to be done at the hospital.  The doctor prefers this than a sleep clinic because of Steve's medical issues.

His supra pubic catheter is working out very well.  A nurse comes to change it every 3 weeks rather than 4 because for some reason his bladder makes tons of grit that clogs the tube.

Bowel issues: Let's not go there.  I give him prunes and juice, miralax, docolax,  liters of water, fruits and veggies, and still he has a hard time.  His brain may send the message but his body is not receiving it.

It's kinda like when I talk and he doesn't listen.  Chuckle!

Thursday, August 8, 2013

Post 67 – What Next?

By now you’re probably sick of hearing about the trials and tribulations I’ve experienced while adjusting to my supra-pubic catheter which was surgically implanted on May 10th  Just one more cautionary tale – one about something I didn’t see coming!

 Each week I have a visiting nurse stop by to check my vital signs and inspect the operation site.  Her job, on a monthly basis, is to remove the old catheter and replace it with a new one (a simple task that takes about 10 minutes).   The first time she made the change was about 60 days after the operation.  Actually, the very first time the catheter was changed was by the urologist’s nurse in the doctor’s office around 30 days after the procedure.   So, after 2 different nurses had no problem changing the catheter, I assumed every change would take place without a problem.  Little did I know!

Now it’s early on a Monday morning and the visiting nurse isn’t due until Friday to change the catheter.  I‘ve awakened early each of the prior 3 nights with a feeling of fullness (almost pain) in my bladder area.  On each of those 3 nights I could only get relief when I moved to a recliner and changed my position.

My wife, Fran, called the visiting nurse service later that morning and explained
my predicament.  Shortly afterward, the nurse called and confirmed she would
come over as soon as possible.  When the nurse arrived she changed the catheter and I immediately got relief.  It turned out that the old catheter was full of a grit- like substance that clogged the diameter of the tube therefore not allowing the urine to flow.

Hopefully, each month will not bring a new adventure of this type. 

I will keep you informed.



Saturday, June 29, 2013

Post 66 - Boy, Is My Face Red!

In a prior post on this blog, Fran explained some of my urinary problems and mentioned how I had decided to have a supra pubic catheter installed.   For the benefit of those people who may not know, a supra pubic catheter procedure involves making a small incision just below the belly-button into which is run a  catheter that takes the liquid waste into a leg bag or, depending on the hour, into  a night bag hung on the side of the bed. Now that I sleep uninterrupted through the night I’m sorry I didn’t have the procedure done sooner.  There are a few minor inconveniences associated with the aftermath of having this type of catheter – one of which I ignored – and one which caused me great embarrassment!

A small pleasure I look forward to each month is when a few guys get together for a couple of hours to eat lunch, shoot the breeze, and play darts at a local pub (I don’t actually shoot darts – which could be very dangerous – I keep score, which keeps me safely behind the shooter’s area, either propped against or holding on to a counter-height table).  
 On this particular day, our group of R.O.M.E.O.s (Retired Older Men Eating Out) consisted of Ray (who usually drives me and pushes my wheelchair) Charlie, Allen, and Rob.  The only ROMERO missing was Dave who was off camping.  We had finished our lunch and were in the dart-throwing area already on our second game when disaster struck!  I was wearing new shorts which Fran had recently bought to cover the leg bag, which on this day was strapped to my right thigh.  The only problem is when you buy over-size shorts and you wear them before taking them in so the waist holds them up.

You can guess what happened next.  We were halfway through the second game, it was close, and I was intent on keeping score.  Perhaps because I was concentrating on the game, I failed to notice that my shorts were falling and were almost to the bottom.   If I tried to pull them up I’d probably end up on the floor – so I let them fall.

Now I know that Ray and Rob are good friends – they both helped me pull up my fallen shorts.  Anyway, the other people in the pub probably didn’t know or care what was going on at Dartboard #6 but if anyone was offended – my sincere apologies.

Friday, May 31, 2013

Post 65 - A Message From Fran

For those who don't know me, I'm Fran, Steve's wife..   I told Steve I would help him type his messages if he dictated.  I didn't think I would be writing my own message for his blog.

A lot has happened since his supra pubic catheter was inserted on May 10, which by the way is a lot easier to deal with than constant self catherization.

Two days after he was home from the hospital he developed a severe fecal impaction.  I won't go into details.  He may in the future.  That wiped him out, literally and physically.  Now,  a week later he developed a fever and UTI.  The high fever has rendered him incapable of picking himself up from the bed or chair, even with my help.  He cannot keep himself upright and tilts to the side making it dangerous to be in a chair. 

 I think we are at a crossroads.  I can hope that when his fever subsides his strength will return, but I have my doubts.  

A nurse and an aide  are coming today.  I'm hoping they will evaluate the situation and give this information to our doctor.  I will be speaking with him next week to see what our next step is.  

I have realized that I no longer have the strength or ability to help Steve properly and I don't want to see him fall on my account.  Whether this means a hospital bed and more home health care I don't know. We will see.  

Meanwhile we will be celebrating our 48th anniversary on June 12th.  If we can't go out to a nice restaurant, I will just bring something in and enjoy our day together.

Thursday, May 9, 2013

Post 64 - Part One and Part Two

This is Part One of what is intended to be a two-part post describing the lead-up (part one) and part two – the actual procedure , which will result in the placement of a supra pubic catheter in the abdominal area of yours truly. 

The decision to go ahead with this placement was really an easy one after trying and failing to get the hoped – for relief from self-catheterization. My urologist, who will perform the procedure, agrees that a supra pubic catheter is the only related procedure that we haven’t yet tried. 

My biggest concern isn’t the procedure itself, which simply involves a small hole in the abdominal wall and bladder into which a long-term catheter is placed.  My biggest concern is the anesthesia which may have lasting effects on someone with MSA.  Fortunately, Fran and I were able to speak with the anesthesiologist a few days beforehand and were able to tell him of our concern.
We are confident that everyone is “on the same page” for tomorrow’s surgery.  Now if I could only get them to change the start time of tomorrow’s surgery – 5:30AM – isn’t that a terrible hour?  I’ll report back to you either later Friday or Saturday.

Part Two
It’s about 4PM on the day of the procedure and yours truly has just awakened from a several hour nap.  The nap was necessary because I was awake at 4AM this morning to prepare for the placement of a supra pubic catheter. 

This procedure, which was to be performed by my urologist at Fawcett Memorial Hospital in Port Charlotte, FL, required that I use a special liquid soap to get ready for the 7AM operation.  At the hospital I had another discussion with the anesthesiologist that only a minimum of anesthesia would be used.  A few minutes later, the urologist was in and made sure I had talked with everyone involved in this procedure. 

It must have been a fairly simple procedure - I was back in the Recovery room in 1 hour and reunited with Fran in about 1hr 30mins.  I was on my way home  by about 10:30AM.  All in all – not a bad day!

Note: It's 8AM "the morning after", Sat, May 11th,and for the first time in months, I've slept the night thru. This morning, Fran changed the night bag for the smaller, day-version .  Right now the supra pubic catheter seems like the best available option for someone in my situation.

Wednesday, April 24, 2013

Post 63 - That's All Folks (sort of)

This blog, which began in August of 2009 when I decided to chronicle my trip to Germany for what turned out to be unsuccessful stem cell treatment, will semi-conclude with this post, #63.  Semi-conclude, not completely conclude because I still wish to occasionally speak about MSA; how it affects me and some experiences that might make life more bearable for my fellow MSA sufferers.

I’m semi-concluding this blog for the simplest of reasons; my fingers just don’t hit the keys I aim at.
By the time I correct the misspellings in my latest entry and the time it takes to complete and post an entry, a couple of hours have gone by, hours that have become more precious as each day passes.

Fran, my long-suffering wife and caregiver, has just graciously offered to type up my wandering thoughts in the future.   She types much better than I ever did so we should be in for an improvement.  Until next time  .  .   .

Tuesday, April 9, 2013

Post 62 - Just Another Accomodation

I‘ve mentioned several times before  how MSA involves adapting to a series of physical conditions such as conditions affecting balance which require first a cane or walker, later a wheelchair, so people don’t think you’ve had too much to drink.  Another condition I’m dealing with now involves the loss of my voice and what to do when I want to add something and be understood.  Just when I thought  had encountered all the annoying conditions MSA had to offer, a brand new one pops up.

This time the issue or annoying condition I’m experiencing involves drooling or, as someone more refined might say, having an excess of saliva when it’s not needed.  Actually, these discharges don’t just emit from my mouth, but my nose, taking a difficult situation and making it extremely troublesome. Imagine having a spoonful of water placed in your mouth with every forkful of food.  You can swallow or remove the excess with your napkin.  Or, you’d like to add something to the conversation but first you’ve got to deal with this water in your mouth.  So what do you do?

 First, you go (the MSA Support blog) to find out if others have encountered this phenomenon and how they dealt with it. You find it’s just another strange condition sometime experienced by those approaching advanced stages of MSA.  You also learn that there’s no treatment for this annoying condition. Lastly, you find the only thing you can do is to prepare for this dinner time visitor – and ask for extra napkins!

Tuesday, March 5, 2013

Post 61 - Where do the Months Go?

I must apologize to readers of this blog for the delay between postings. I try to post at least every thirty days but I realized today that I haven't posted since January19th.

In my defense, my mind may have been somewhat preoccupied by the fact that I've been fighting a UTI during the entire month of of February. For the uninformed, a UTI is short for urinary track infection, a condition many MSA'ers are familiar with.

I think I've whipped this bout of infection, through lots of juice and a prescription for the antibiotic, Cipro,

Finally, I've learned the most likely way I contacted this infection was less than spotlessness at the catheter site. Lesson Learned: Germs are ubiquitous. Scrub up thoroughly even if you don't think its necessary.

Saturday, January 19, 2013

Post 60 - Who Moved That Wall

Those of you who read Post 58 or, “Another Concession,” learned of my purchase of a
Jazzy ”Ultra” motorized wheelchair to take the place of my regular chair.  This power
chair was intended to make it easier to get around the  condo. 

I should have waited a few days before posting my final comments – in order to describe
how that intention actually worked out. With 5 forward speeds you’d think I’d get from
one end of the condo to the other, in no time at all.

The problem wasn’t speed. It seems that things kept getting in my way – like walls,
doorframes, and even a pesky piece of base molding I kept running into. I couldn’t figure it
out – the chair had become more of a battering ram – damaging everything it

It finally became clear what was causing the problem;  I’ve lost most of my sense of
depth perception which makes things seem closer or further away than they really are. 

Since there’s no improvement in sight, you’ll soon see a “For Sale” notice on Craig’s List or our
local Classified –before I knock down the condo!

Tuesday, January 1, 2013

Post 59 - Help for the Handicapped

Every other year, a quiet and subdued Christmas celebration takes place at our house – just a few close friends or relatives who aren’t heading north or who live here year-round.
Next Christmas, however, the activities around here (and I expect to be here) should be merrier and certainly noisier, since our oldest daughter, Deb, our son-in-law, Mike, and our 8-year-old granddaughter, Lily, will be spending the Holidays with us.  And, if we’re really lucky, our youngest daughter, Lee, will get away for a few days and the whole family will be together.

 This “off year,” no matter how quiet and peaceful, was not without its share of health-related surprises.  The first item was the gift I decided to give myself. Every time I chose to transfer from my wheelchair to some other chair was becoming more dangerous because I had to rely more on Fran’s help. That “team” act would be no problem if she and I were anywhere near the same size, but she’s nearly a foot shorter and considerately lighter, and a transfer always meant risking a fall or muscle strain. So, to guard against injury to either of us, we treated ourselves to a motorized “lift” chair from our local medical supply  store; the same one we got our scooter from a few years ago. The chair was delivered on Christmas Eve and has been working just fine.
The next item was a surprise from Fran to me, disguised with bright-colored Holiday wrapping.  Apparently, my dear wife is tired of cleaning up after me, especially around the dining table where food regularly spills from our standard shaped, every-day bowls. My gift, as much for herself as for me, was a few dishes especially designed for the handicapped or people with dexterity issues.  I’m pretty sure they’re working as intended – Fran has ordered the whole set and the dog isn’t hanging around my chair as much.

Seriously, let’s hope 2013 turns out to be Happy & Healthy for us all!