Monthly Archives: October 2018

Unsure

Unsure

I’m unsure what’s worse getting a cold while on prednisone or getting a cold and having MG.  I’m sure the three together are working to keep me down this last two weeks.  The last two weeks have been the absolute worse since I contracted MG — short of when Elizabethe and I had the flu earlier this year.

Balancing Act

It’s a balancing act.  One medication has this effect, while another one is supposed to deal with that problem.  The doctors have their work cut out for them.  It must be quite the dilemma trying to decide if someone should be treated for high blood pressure or taken off prednisone.

I can only wait and see.

Hill Cumorah Pageant

An announcement Sunday was made concerning pageants in the church.  It appears the Hill Cumorah Pageant will wind down by 2020.  For many of the people in this region, that will be quite a culture change.

I hope people will now spread out their visits to Palmyra.  The Pageant windfall is nice, but I think if all the locals play this right, they might seel blessings come more steadily throughout the year and years to come.

People will still flock to Palmyra to see the sacred sites.  It just won’t all be mid-July.

Decisions

We are facing many decisions.  We’re leaning towards selling the house and building here in Palmyra, and finding someplace closer to the girls in Utah.  There is no way I can physically manage the house.  I can barely do the bare minimum each day without totally exhausting myself.  Myasthenia Gravis is quite debilitating.

I read that men who contract MG lose about 50% of their income on the average.  While I don’t remember the figure of those who become completely disabled, the research paper did say that a large majority find they cannot work at all or very little.

In my Myastenia Gravis for Men group, it is a very common consensus that there is a lot of down-play about the disease.  I conducted a little poll and asked, “Do you have pain associated with your MG?”

Now, you’ll find website after website that says there is no pain associated with MG.  However, my little poll says about 67% have pain (50% most of the time + 17% some of the time).  That’s only 1/3rd who say they don’t have pain.  It’s unscientific, but it confirms my suspicions.

Another comment you hear is, “Many people with MG go on to live productive lives.”

We got talking about this in the group.  We’re all kind of laughing about how they define “productive”.  They definitely don’t mean “active”!  Most of us say our productivity is cut drastically and activity even more so.

Productivity

I know before I caught a cold a couple of weeks ago, my “productivity” was about 30-60 minutes a day.  For the last two weeks, it has been about 1-2 hours a week split between 2-3 days.  In other words, this cold dropped me from 3.5-7 hours a week down to 1-2 hours a week.

Activity

The activity I tolerate most is walking slowly.  Even then, I must be careful to avoid overdoing it.  When my legs aren’t all weak feeling, it is nice to walk a little.  When I overdo it, the results are the pain, weakness, and fatigue.

Even typing my blog is fatiguing.  (Hence, so few entries this year.)  Brain fog makes it worse.  I’m constantly getting red-lines under words because my fingers aren’t hitting the right keys.  Then, it’s difficult to think, “What word was I trying to type?”  That only makes things worse because I find it upsetting when I type something like, “zyjod od s yrdyz” when I meant to type, “This is a test”.  (I’ve never had a problem with my hands being shifted until this brain fog thing started to happen.

Talking is pretty much a no-no.  That’s one of the first muscles to be affected.  Paralyzed vocal chords carry with them a double-whammy.  The first whammy is losing your voice.  The second is the reflection that coughing will solve the problem.  It doesn’t.  It only makes it worse, but try telling your subconscious that.

My Hope

My hope is the doctors and I will find a good balance of my medication that will allow me to have the stamina to at least feel like I was able to get some exercise in.  It may not be the stamina needed to mow the lawn, shovel snow, fix a broken faucet, build a shelf for Elizabethe, etc., however, it would be nice to know I’m able to do something for my heart.  It might be riding my stationary bike for 15 minutes a couple of times a day.  (Right now, the doctor has told me to not attempt any exercise program until we get my medication stabilized.)

Reality tells me there will be good days and bad days.  Hope tells me there should be a way to lesson the bad days (which have been all too frequent lately), and know my limits.

Everyday is Different

Everyday is Different

Every day is different.  In fact, every hour and minute is different since contracting this diseases.  One minute I might be walking normal, and the next you’d think I was drunk.  Another minute I might be talking just fine and the next minute words don’t escape my lips.

It is difficult coming to grips with the changes.  While you want to make plans, you don’t really know what is in store.  For that matter, do any of us know what is in store one day to the next?

Of course, we don’t, but we operate on the assumption that tomorrow we will feel like we do today.  When you are told you have an incurable disease, the assumption changes that tomorrow you will feel crappy just like you do today.  So, you go from making normal plans, and now you tend to see things as planning for the worse.

Attitude

Having said that, you’re probably thinking I need to have a positive attitude.  I’m trying, but I also have to have a realistic attitude.  I’m thinking positive that by working with my doctors I will find a happy balance between medications, rest and activity.  The realistic part is I won’t get better, but I will only get better at how I manage and cope.

So, yes, if I spend 30 minutes working in the yard today and feel crappy for three days afterward, I can probably plan on that being the result of 30 minutes of yard work.  On the other hand,  if I do 15 minutes, followed by an hour nap, and feel fine the next day, I can probably say I can handle 15 minutes if I take a nap after doing the work.

Realistic

I can have a hope I might be able to do more than 30 minutes once I’m on the right dose of pyridostigmine and prednisone.  However, to be realistic, my endurance may not ever change.  What might change is how I feel between activities.

Gratitude

Gratitude is playing a big part in my positive attitude. I woke at 4 am and couldn’t go back to sleep so I went into my office, sat in my new chair (which I’ll tell you more in a bit), ate some food and piddled on my computer.  I’m grateful I did that.

The other day the delivered and set up a zero-gravity chair for me.  The doctor wrote a prescription for the chair, and I shopped around and all I could find online is stuff that cost $3500 to $9000!  These are chair specifically built for people with problems like MG, MS, ALS, etc.  I walked into Raymour and Flannigan and asked described what I needed a chair to do.  The salesman took me right to a chair that was perfect.  It was a tad over $1000.

After the set it up, I tried to use a laptop desk we have.  The wheels made it so it would not fit next to the chair.  My wife took the table legs, went to a local metal shop, they cut them off and ground the metal and didn’t charge her.  I now have it configured so I can see and use it in such a way that it rests my neck and back muscles and is less stressful on my hands and arms.

As I sat in this rig this morning, I was overcome with a sense of relaxation I have not felt since getting MG.  I was also overcome with gratitude for a Heavenly Father who has helped me work around limitations imposed by MG.  My gratitude for my wife being wise enough to take the table to the metal shop and get it modified is also near the top of the list too.

Life with Myasthenia Gravis

Life with Myasthenia Gravis

What is life like with Myasthenia Gravis?

To better answer that, I will start with the period of time when I knew something was wrong, and I will work my way forward.

Before Diagnosis

I knew something was wrong after being on antibiotics for a sepsis infection for about 2 weeks.  My infection cleared up, but I still felt like I had the flu.  Oh, I should give a timeline…

  • January 1st, 2018 – Went to Israel for 10 days.  While there I experienced tightness in my Achilles Tendon – it was very painful.  Now, I attribute that to the MG.
  • January 11th, 2018 – returned from Israel.
  • January 15th, 2018 – got the flu.  I’m really sick.
  • February 19th, 2018 – I think I’m well enough to travel to my daughter’s wedding in Utah.
  • February 23rd, 2018 – My right knee is hurting.  I erroneously associate this with arthritis because this is the knee that was hurt when I was hit by the car.\
  • March 8th, 2018 – My knee is so bad I went to see Dr. Alexander.  He said I have a sepsis infection in the knee.  Likely cause?  A compromised immune system from having had that nasty flu.
  • March 18th, 2018 – completed the antibiotics for the knee infection.  I still feel like I have the flu.
  • April 30th, 2018 – Had an episode of dizziness.  I know know that it was caused by the MG causing my left eye to just wander off.
  • May 2nd, 2018 – mowed the lawn and thought I was going to die that evening.  I’m wondering how long it takes to recover from the flu and sepsis.
  • May 21st, 2018 – I’m still getting real run-downed.  I keep thinking it takes a long time to recover from the flu.
  • May 28th, 2018 – I feel like I’m dying.  I’m afraid to go to see the doctor because I fear the news will be grim.  (Yeah, doesn’t make sense… I know.)
  • June 10th, 2018 – We go to our granddaughter’s baptism in Atlanta, GA.  While there, I still feel tired, but not like I have the last several weeks.  I’m thinking the uplift in the spirit in seeing the kids and grandkids is snapping me out of it.
  • June 18th, 2018 – Elizabethe convinces me to see the doctor.  I also schedule an appointment to see a neurologist, but it isn’t until the end of September.
  • July 1st, 2018 – I find a symptom diagnosis tool online.  I plug in all of my symptoms and ALS comes up.  Now, I’m worried.
  • July 10th, 2018 – The doctor is still testing my blood for various stuff.  Her top 3 pics:  Myasthenia Gravis (which I had to google), Parkinson’s, MS.
  • July 21st, 2018 – I completed a week-long course.  I gave the instructor a heads-up about how I’ve been feeling.  Everyone was understanding.  At the end of the week, I was exhausted.
  • July 30th, 2018 – After 28+ blood tests, I go online and start looking at various possibilities to ask the doctor about:  Myasthenia Gravis, Ataxia, CFS, ALS
  • August 22nd, 2018 – I receive a preliminary diagnosis of Myasthenia Gravis.  The neurologist prescribes pyridostigmine 3x a day.  He says if I DO have MG, I will notice a difference.  If I do not, I won’t notice a thing.
  • Augst 23rd, 2018 – I wake up noticing a HUGE difference in how I feel.

Life On Pyridostigmine

  • I went from feeling like crap most of the time, to having three good periods a day.  For about 1-2 hours after the medication would kick in, things would feel pretty well.  I still got tired, but not completely exhausted like I have been.
  • It was a rollercoaster of good and bad.
  • Symptoms that improved on this drug:  Less joint pain, fewer big muscle spasms, periods of not feeling fatigued.
  • Symptoms that did not improve:  small facial spasms (actually increased), tremors, uncontrollable limb movements
  • After a month, I asked the doctor to increase the pyridostigmine, and he said he wants me to try prednisone first.

Life on Pyridostigmine AND Prednisone

  • I feel like I have energy… until I do too much and then it backfires.
  • My activity level is about 30-60 minutes per day.  30 minutes if it is something like yard work.  60 minutes if it is something like driving to the store our out to dinner, or going to a meeting.
  • The roller-coaster effect has lessened.  When the pyridostigmine wears off, I get weak and shaky, but not so much the extreme fatigue.
  • I keep having this false sense of “I’M BETTER”.  Then, I do too much and I pay the price.
  • Recovery time is a bit quicker than before unless I really overdo it.
  • I still need to take it very easy, but my relaxation periods are more relaxing vs a feeling of “I’m dying”.
  • I get the jitters from the prednisone.
  • Insomnia is frequent because of the prednisone.
  • Certain spasms still happen.  What I was calling tremors, might actually be dystonia.  I will be discussing dystonia with the neurologist.
  • Brain fog still remains a big issue.

What I Can and Can’t Do

  • I can still bathe and groom myself.  Some MG patients can’t even brush their own teeth.
  • I can’t be on my feet for too long at a time.  Unfortunately, I don’t know what is too much until much later in the day.  So, I take things a little bit at a time.  If it works, I say, “I can do more tomorrow”.  However, if it doesn’t, I pay the price over the next few days.  This is how I came to the 30-60 minutes.
  • Mental exertion really fatigues me physically.  I know that sounds funny, but when I try to do something mentally taxing, I get fatigued.
  • Brain fog interferes with mental tasks.  Boy, don’t ask me to balance a checkbook.  Just yesterday I subtracted two three-digit numbers only to be pointed out to me that I was off by $100.  For this reason, I am shying away from big decisions that involve critical thinking. (I installed a spelling/grammar checker on my computer because it is REALLY hard to blog without making HUGE mistakes.  Just in this bullet point, it corrected at least 8 typos.)
  • I can paint, however.  I find it therapeutic.  It helps me feel like I’m doing something constructive.  Oh, I do this on my computer where I can rest.  In fact, tomorrow I take receipt of a special chair that will take the strain off my neck muscles.  There’s also no stress of a deadline or pleasing a client.  It’s just for me.
  • I can’t do anything physically demanding – lifting, repetitive actions (like using a hammer, saw, etc.), and many other tasks we see as normal day-to-day tasks.  In fact, some days I can’t even push the push-bar to open a door at a restaurant.  I have to turn my back, and walk backwards into the push bar so my weight will unlatch the door!
  • There are several physical things I used to do well, but not anymore.  They include…
    • digital dexterity (I seldom dropped stuff before this struck.  Now I do on a regular basis.  I also often have times navigating my fork or spoon when eating.)
    • digital strength
    • arm strength
    • walking without stumbling or tripping
    • talking (I now stammer when MG is making me tired.  I also get dysphonia.)
    • playing my trumpet (I don’t have the diaphragm strength now.)
    • hand to eye coordination.
    • physical labor (this is a given with MG)

What Things Might Happen in the Future?

Well, there are no definites with MG.  Every person is different.  For that matter, every minute is different.  Some of these symptoms happen without warning.  You can’t predict MG symptoms.  Ones with an * are ones I’ve already experienced to one degree or another.

  • Loss of neck support muscles*  I may have to wear a neck brace during such periods, or simply lay down until my strength comes back.
  • Going crosseyed*
  • Eyelids losing their ability to close*
  • Loss of strength in the arms*
  • Loss of strength in the legs*
  • Loss of strength in the back*
  • Paralysis of the diaphragm (this is called a myasthenia gravis crisis and requires hospitalization)
  • Loss of facial expression (can’t smile, raise your eyebrows, etc.)
  • Loss of ability to chew
  • Loss of ability to swallow and choking of food and beverages*
  • Speech loss (dysphonia)*
  • Slurred speech

So, there you have it.

If you see me walking down the street and I’m staggering and slurring my words, I’m not drunk.  I have myasthenia gravis.

Conference is Life-Changing

Conference is Life-Changing

General Conference for the Church of Jesus Christ of Latter-day Saints is life-changing.  There’s no question about it.  Every six months, faithful members of the Chruch of Jesus Christ of Latter-day Saints attend a two-day life-changing conference.

Well, I hope it is life-changing for everyone.  It requires commitment, motivation to do better, and follow through.  For someone to sit there and say they didn’t get much out of General Conference is an admission that it is their own fault.

What Did I Find Life-Changing?

  • At a time in my life, due to my illness, when it is difficult to endure 3 hours of ANYTHING, the reduction from 3 hours down to 2 hours is a welcome blessing.
  • There were several references that the Second Coming is closer than we think.  I will think twice about how I spend my time.  I will also work on repenting as needed.
  • Our Heavenly Father loves us unconditionally — even when we don’t think He does.  I will work on having more confidence that the future will work itself out.
  • Stop being angry and holding grudges.
  • Don’t beat yourself up over mistakes from the past.  I need to work on understanding that God forgives, but I need to forgive myself and dismiss any regrets I have for mistakes I’ve made.
  • It “grieves” the Lord when we don’t call the church by His name.  This is one I’ve tried hard to do — even before the reiteration given earlier this year.   I will continue to remember to reference it as the Church of Jesus Christ of Latter-day Saints.
  • Do more than just read the scriptures — study them.  Elizabethe and I will need to modify how we do our scripture “reading”.
  • Social Media Fasting – The challenge was to the sisters, but I will do it too.  I’ve already deleted those apps from my phone and tablet.  He also mentioned staying away from negative news sources.  So, I am not going to click on the “News” tab in the search engine window.
  • Even if illness or disability has struck, there are still ways to minister to others in need.  This one is harder.  My diagnosis is still new to me.  However, I plan to start thinking of ways I can serve without causing pain or weakness to my body.
  • Go to the temple more often.  This is another difficult one.  But, I got thinking… I’ve canceled most other “extra” activities because I simply can’t do them anymore.  An endowment session is no more exerting than watching TV and having to get up to go to the bathroom a couple of times during a movie.  If I can watch a 2-hour movie, I can attend an additional session once a week.

Every Six Months

Every six months is a life-changing event.  I’m thankful for living prophets who receive revelation and remind us what we need to do to return to our Heavenly Father.

Fasting Is Good

Fasting Is Good

Fasting is good, especially when it is an abstinence from social media.  A few months ago, the prophet asked the youth to do a social media fast for 7 days.  Last night, he asked the women to do a social media fast for 10 days.

When the prophet asked the youth to fast for 7 days I decided to do it too.  I figure what’s good for them is good for everyone.  With last night’s request, I figured, what’s good for the goose is good for the gander.

When I did the 7 days fast I deleted all social media applications from my cell phone.  I never installed them after that.  This time I’ve deleted them from my tablet.  After the 10 days, I might not install them their either.

Conference Talks and Social Media

I noticed the mention in a couple of conference talks the contention that takes place on social media.  Just in the last few days, I’ve blocked 4 members from my Facebook account.  Why?  Contention.

One of the biggest contentions going on right now concerns Justice Kavanaugh’s nomination, and subsequent installment, to the Supreme Court.  It has split many people into three camps:  Those who feel Kavanaugh is being falsely accused and assumed guilty, and those who believe all his accuser has said about him.

The third camp seems to be the only rational camp.  Their rationale is this:  a presumption of innocence must always take precedence in legal matters, and victims should be listened to.  The two camps that are split can’t see this middle ground.  It’s simply this – his accuser should go to the police where the alleged crime to place, report it and let the investigation run its course.

There are consequences to what I just said.  If the investigation shows a crime was committed, a trial will be convened, and if found guilty, Kavanaugh will most likely be removed from the bench.  However, if it clears Kavanaugh of all wrongdoings, his accuser may have consequences to pay.

It Won’t Come to That

It won’t come to that.  She’s not going to go to the authorities.  Kavanaugh is going to serve and, just Clarance Thomas, when the smoke clears the air people will shake their head at this fiasco that has taken place.

The Truly Scary Part

The truly scary part is there are people who want to lynch Kavanaugh.  They believe his accuser is 100% truthful, he doesn’t need a trial, he’s guilty because she said he did these things.

I HAVE SAT ON THE ACCUSED SIDE.  It isn’t pretty.  It emotionally scars you for life.  My wife still leaves the room if I start to talk about it.  She can’t take being reminded of it.  It also had dire financial consequences.  I too was assumed guilty without any opportunity to prove my innocence.

The truly scary part is those in power who choose to ignore the Bill of Rights.  What adds it is there are those among us who believe it is okay that those in power ignore the Bill of Rights.  After all, if someone says it, it must be true, and if they accuse someone, that person is guilty.

Heaven help them if they are ever falsely accused.

Blocking

Blocking

I take blocking on  Facebook serious.  I don’t block people because I disagree with them, or because I don’t like them.  Blocking people for behaving like jerks online is what I do.  They may be the most delightful person face-to-face, but when they turn in to an ugly monster online, I block them.

Last night I woke in the middle of the night with the impression to block 3 friends.  Yes, they are friends, but not the Facebook type of “Friends” anymore.  The impression was strong.

I signed on to Facebook, ready to do it, and thought… I should pray about this.  So, I did.  I prayed about it and felt even stronger that it was the right thing to do.  I don’t know why I simply felt blocking them was the right thing to do.

Jerks

When I say behaving like jerks, here’s what I consider to be a jerk…

  • Trolling – this is at the type of my list.  This is a form of cyber-bullying that I won’t tolerate anymore.  It can be innocuous as simply replying in disagreement to every comment specific people make, or as outright as calling people names.
  • Cussing – use the F-word, and you’re blocked.  There is no place for that word — EVER.  There are a few others I have on the don’t use list.
  • Intentionally insulting – Here’s an example, a guy in a group camera group I belong to said everyone who voted for Trump can’t read big words.  I responded letting him know I felt his comment was beneath him and that he was better than that.  (And, I did not vote for Trump!)  His response was even more insulting.   I blocked him.
  • Constantly perpetuation false information – There are few people who spread the dumbest stuff around.  If it is dangerous to people’s health, and they do it often, I’ll block them.  I also block them if the information is slandering someone.
  • Pure Evil – if someone does something that’s pure evil, and I don’t need to enumerate on evil, I will immediately block them.  I see supporting evil as bad as doing it.  I’ve blocked people for death threats against others, as well as agreeing with someone who has made such a threat.

Where I Draw the Line

I draw the line with going beyond disagreement by making it personal.  When someone takes a disagreement and uses their position to belittle or intimidate, that’s where the person now put themselves in one of my above categories.

Yes, I may have been guilty of doing this myself, but I’ve worked on disciplining myself to avoid doing it.  There are times I want to say, “You’re an idiot,” but I don’t.  I’m even working on not thinking it, because if I don’t think it, I won’t say it.

What Makes Me Sad

What makes me sad is when I block a member of the Church of Jesus Christ of Latter-day Saints.  We are taught to behave better than that.  The scriptures teach to avoid contention.

Years ago I recall seeing a bumper sticker on a car in the church parking lot.  (This was in California.)  It was contentious and vulgar.  I think the bishop might have talked to the person because a few weeks later, you can see where they scratched the sticker off the car.  It left an ugly mark.

It makes me sad because some of these people are unknowingly leaving ugly marks because of their posts on social media.