The Clip-Date

I'm sorry to be back so soon, but there was a hiccup with his LP that I thought I'd share... There is some good news - Andy didn't have a fluid leak this time.  Huzzah!  He had the beginnings of spinal headache (think regular headache but five hundred times worse) on Monday night, but he took the recommended meds and was diligent in staying flat for 24 hours after the procedure and I'm happy to report that he is feeling fine now.   As to the hiccup?  Well, let's just say that it was like he was starring in the movie Misery , and Kathy Bates was his physician.  The doctor wasn't having success in getting his spinal fluid out, so she kept manipulating him, the moveable bed, and the inserted needle itself.  As a result, the needle kept bumping into the nerves and sending terrible, shooting pain down his legs.  Like, really awful.  And it went on for over an hour!  He was quite shaken up when he finally got back to me, and he was literally s...

It has only been five days, but so far Andy is doing fine with the change in steroid dosage (now 30mg daily).  The new issue is that for the first time, he is experiencing some steroid withdrawal symptoms.  Exciting, isn't it?  It's really not a surprise, now that we think about it, but he's not a huge fan.  We've talked to his team and depending how the next weeks go, they might elect to slow his taper even further in the future, reducing by smaller increments each time.   He continues to have difficulties with some pesky symptoms.  It is often hard to discern whether it is current disease/inflammation, damage that is permanent, or side effects from the drugs.  We'll continue to monitor him, and by that, I mean that I'll be uncomfortably staring at him all the time and asking him how he feels approximately four hundred and sixty-seven times each day.  He's so thrilled to have me around.   Next on his to-do list will be having anoth...

Andy has been on his current daily steroid dose (40mg) for approx. four weeks, so the time has come for another step down in dosage.  Overall, he's been doing quite well; if you didn't know him, you might not notice that he is having any issues.  Many of his struggles aren't visible to the casual observer.  He has seen a slight uptick in a few symptoms, but it is too soon to tell if it's just a blip or if it is the beginning of a larger flare.   Drop Day is scheduled for Sunday, March 21st.  He's a bit worried about how it will go, so we have a few specific prayer requests to share. The first request, naturally, is prayer that he'll tolerate the drop.  We pray that his body will adapt wonderfully and that he won't see any increase in symptoms.  If that happens, he'll have to increase his dosage again for a while...not the ideal direction to be traveling.   The second is that if he does have a flare as a result of the change, that any los...

If I'm going to document our story, I have to start at the beginning.  Buckle up or grab a drink...this might take a while.  September 12, 2020, was Andy's birthday and the day that we officially became empty-nesters.  It was also the day that he first started experiencing some balance issues; problems with his vision and gait soon followed.  Initially we thought that he was dealing with vertigo or Meniere's Disease. Difficult and annoying?  Yes.  Profoundly life-changing?  No.  However, as the weeks progressed, his symptoms quickly worsened and by the end of October he was losing his vision, unable to walk unaided, having tremors, losing feeling in various extremities, and slurring his speech, along with numerous other symptoms.   As the fall and winter months continued, his medical team had grown to include: his PCP, an ENT, a neuro-ophthalmologist, a primary neurologist, a research neurologist, and the internationally-known head of Ne...