ALS Update: Sleep medicine and cutting my nails

I have four more falls to report.  Two scared the dickens out my whole family, even me.  One worried them.  The other was an annoyance and a reminder.  I also purchased special nail clippers, an electric toothbrush, and interdental brushes due to increasing loss of dexterity in my hands.

The first fall was under the influence of sleep medicine.  I was having trouble sleeping with the collar and I used the oxycodone I as prescribed to compensate, but I didn't want to renew it for that purpose.  So, my wife picked up two different sleep medications, and I chose to use the Diphenhydramine HCl, based on it saying it was not habit forming and fewer contraindications.  I took the standard dose the first night, and when I awoke for my nightly potty run, I was completely disoriented and fell out of the bed, hitting my head on the open closet door.  Even worse, I tried five times to stand up without success from an all-fours crawling position, once when my eldest son tried to offer me a hand.  My wife and kids were frantic.  Finally, I managed to face the bed, get my hands on the top of the mattress, and use my arms to lift me.  We now have a small bed rail with handles to keep this from happening again.  After that, I only used a half-dose of sleep medication, which was sufficient.

The second time I was alone in the bathroom, and was trying to sit on the toilet, when I slid to the left and landed on my rear upon the floor.  I was able to use the bathtub to lift myself up.  It was a good reminder to always use a hand on something to guide my descent.

The third time I was trying to use a cane on a supposedly short shopping trip.  The trip became longer and longer, sand I broke off from the family to sit and rest.  After they checked out, they came to collect me.  I made the mistake of not using the shopping cart as a walker and of not waiting by the door for the car to be driven around for me.  Five feet from the car, I fell backwards, landing flat.  I was helped up by three people, two sons and a passing stranger.  The back of my head was bleeding, so we went to the ER.  A CT scan revealed there was no fracture, no brain bleed, nothing serious.  I didn't even get a stitch nor a staple, all they found were abrasions.  Still, my wife very wisely purchased a wheelchair for me.

The most recent time was simple carelessness.  I was using a walker and rushing to get out the door.  A walker leg was entangled in a cord from a recliner, and I felt the entanglement, but could not slow down in time, and I took the walker down with me.  I was able to use the chair with the cord to right myself.

Each time, the Miami J collar protected my neck, and there was no additional damage to it in yesterday's x-rays.  Further I was healed sufficiently to be declared fit for work with no restrictions and was told I no longer needed the collar.  After we went home, my wife suggested that I wear the collar anyhow when using the walker or the stairs, and I agreed it was a promising idea.

I can operate standard fingernail clippers, but it is extremely hard to do with my left hand.  So, I purchased clippers designed for people with arthritis.  They turned out to be toenail-sized, and I wound bleeding in five of my fingers trying to use them (they were very good on my toes).  I have ordered a set that includes finger-sized clippers.  I have also been having trouble brushing and flossing, so I ordered an electric toothbrush and interdental brushes for flossing.  My wife has been reading other people's experiences with ALS, and she has described what she read as every time you make an adjustment, you lose another ability and must adjust again.  The description fits what I am going through.

Read more!

ALS Update: I fall and need a bib

I am doing two months worth of updates.  I don't have much good news to share.  I fell six times during the month of December (four within the space of a week), and I think my strength is starting to fade faster than from age alone, but it seems to vary day-to-day.  My typing us slowing down, but that doesn't affect my day job significantly.  On the plus side, I am still doing all my daily routine, including the chores for the family, and I am still eating a pretty sizeable amount.

That update was intended for the end of December.  Things have changed since then. 

The first fall happened December 3rd when I was putting on my pants, and I pulled my leg out from under me rather than lifting and then pulling.  I had just been advised to be intentional and deliberate in everything I do, and I completely ignored that.  Fortunately, the landing area was soft, and there was no damage.

I fell again on December 5.  I was walking upstairs in my home, and my momentum carried me forward.  Again, there was no damage (I didn't have far to fall before hitting the steps).

Next, I fell on December 10.  I was going down the stairs outside the back door, and hurrying again.  This time I aggravated an old weakness in my right knee.  It's been painful ever since, for some reason being worse in the morning after I sleep, and gradually improving over the course of the day (usually).  Every fall since has involved my right knee buckling at some point.

The last fall of that week was on December 11.  I was carrying three bags of games out to my car, and a bag hit my knee, with the predictable result.  None of the games were scattered externally, but several were scrambled inside the box.

The morning of Christmas Eve, I scored two falls the the same morning.  The first was within the first four steps out of bed, I just dropped to my left knee, which is much better shape.  The second as I was taking my laundry downstairs, where I was at least able to arrange to fall backwards, basically sitting down hard on the stairs. 

Two more falls were on January 7.  Again, my right knee just buckled right after getting up.  The second fall was in the evening, when I tripped over a case of soda cans while not paying attention.  No damage either time.  I fell forward Jan 11, as I was trying to get back into bed after a urine trip to the bathroom, the only damage being a mild scratch on my thigh from the bed frame corner.  A second fall occurred that night, as my foot caught on the sleeve of a shirt I didn't pick up; there was no damage.

The last fall, so far, was on January 17.  I was walking down a dark hallway and not paying attention, and wound up careening off a fixture and falling frontwards.  Again, no injuries.  That's an even dozen including the fall in October, so I guess I'm done falling until I turn 62.  That's how it works, right?

Apparently not, and the 13th fall was the doozy.  I started trying out a knee brace on January 20, and it threw my balance off even while it helped my knee.  The morning of the 21st,  I started doing laundry.  Even though I knew my balance was off, I was carrying laundry down the stairs.  I went from the second floor to the first awkwardly but successfully, thought to myself I should ask for help, but decided not to.  I went down two steps to the basement, turned to close the door, lost my balance and fell the wrong way down.  Based on my injuries I did a full somersault down the 9 remaining steps before smacking my face into the wall.  I had two cracked thoracic vertebrae (initially the trauma team thought it was 3, but only were listed on the x-ray report), 2 more of the cervical variety, and lacerations on the top of my head and face.  There doesn't seem to be other damage, so my legs, arms, etc. have nothing more than scrapes.

I  was admitted to the hospital on the 21st, and discharged to home on the 26th.  I have a swanky MiamiJ neck brace, another brace for showering, and am on very limited mobility at home.  I have another x-ray on the 28th, which I hope will get this brace off and approve me going back to work.  My family has gone above-and-beyond taking care of me, especially my wife.  Outside of personal maintenance, I don't do any chores at all for now.  I expect to make a full recovery.

To end with a little bit of a lighter note, I started wearing bibs in December.  My wife purchased six amazing blue, terrycloth, adult-sized bibs.  They are splendid.  Everyone should get one.

Read more!