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.

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.
 

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  .  .   .

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 shyderager@yahoogroups.com (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!

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.

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
encountered.

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!

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!