Tag Archives: Myasthenia Gravis

Realization

I’m in a realization mode. Over the holidays I’m realizing how much I have been in denial. The other day I completely destroyed my photography blog as a result of my myasthenia gravis. My illness caused me to goof up with the computer mouse and delete a bunch of files. Unfortunately, the system my blog is on has no undo command and no trash bin.

It took this unfortunate event to get me to realize, the myasthenia gravis is worse than I care to admit. And, like I mentioned in my previous post from earlier this month, denial and anger are part of the grieving process.

Frustration

Frustration is also part of this. I cannot begin to describe how frustrated I was that I lost all that history in my photography blog. Even restoring a backup did not bring it back. Well, it brought some files back, but it didn’t get it working. I guess it can still be recovered. Unfortunately, the brain fog that goes along with my MG prohibits me from doing it.

Exhaustion

Frustration leads to extreme exhaustion. This single incident knocked me out for days.

I have met others who are managing well with their MG. One such person has the form that mostly affects the eyes. When we were talking about our symptoms he commented how fortunate he has been that MG hasn’t impacted his larger muscles like arms and legs, but only some of his facial muscles.

On the other hand, I’ve learned of others who have been completely and totally disabled from the disease. Recently a dentist in the midwest died from MG. While death is rare these days, it still happens. I did some digging. Most deaths related to MG these days are elderly (late 70s and 80s).

Denial Anger and Acceptance

Denial Anger and Acceptance

Denial, Anger and, Acceptance are all part of grieving.  When you lose your ability to do what you love to do, you’re going to go through these phases.  I think I’m over the denial phase.  It’s now time to deal with the others.

It’s difficult to give yourself permission to be angry I’ve been told.  I’ve always been taught it isn’t good to be angry.  I don’t know where to direct my anger.  There’s nobody to blame, and if there was, it wouldn’t do any good.  Nobody wished this upon me, and I didn’t do anything to bring this upon myself.  They don’t even know what causes MG.  So, I’m not sure how to be angry, but I do have negative emotions about my disease.

Wearing a Mask

It’s easy to wear a mask when you’re in public.  What others don’t realize is their short interaction with me might be the ONLY thing I can muster that day.  For example, when I go to church, that’s about all I can do for the rest of the day.  In fact, it might even put me bed on Monday because I overdid it.

I hear comments like, “It’s nice that you have a good attitude about it,” but what they don’t see are the emotional breakdowns when all you can do is wallow in self-pity.  Because I’ve rested before going out in public, they don’t see me when I can’t open an eye, having dysphonia as I’m trying to reach for the phone, or other intermittent symptoms.

Acceptance

Acceptance is something I’ve come to terms with.  That doesn’t mean I’m happy about my situation, but I’m past that denial phase.  For the first couple of months I kept thinking, ‘Once I get a handle on this, I’ll be out riding my bicycle again.’

The fact of the matter is, I will probably never ride a bicycle again.  The risk is too great.  It is a high risk that I’ll crash, and an even higher risk it will do damage to my muscles.

I accept that my MG has been very aggressive.  For some, MG simply means going cross eyed from time to time.  For me, it means not being able to straighten my back upon rising from a chair — not always, but I have no way to predict when this will happen.  LIkewise, I have no way to predict when I will lose my voice, strength in an arm, leg or hand.  I’ve come to accept that there may come a time when 9-1-1 has to be called because I couldn’t swallow or I can’t breath.

Learning

I can’t continue to wear a mask when I’m out in public.  At the same time, I don’t want to be a downer.  But, if you ask me, “How are you doing?” be prepared for me to be truthful.

I anticipate there will come a day when those people who see me regularly will see me at my worst.  They’ll see me when I can’t turn the page of a book, or I walk like I’m drunk, or some other outward symptom of myasthenia gravis.

Excuse Me

So, excuse me if at some point I blow a cork because I’m angry with my situation.  I need to figure out how to deal with this anger and sadness.  It’s like my former self has died, and I miss him.

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.

Still Testing

Still Testing

I’m still testing my limits.  Currently, it’s about 30-60 minutes per day.  It is not a lot, but if I choose to day, say 2 hours, I’ll probably be down for the rest of that day, plus the next 3 days.

I saw the neurologist last week, and he placed me on prednisone in addition to the pyridostigmine.  He said the pyridostigmine goes after the symptoms, where the prednisone goes after the cause.

CT Scan

I also go in next week for a CT scan of my chest — specifically the thymus gland.  The idea there is to rule it out as the cause of the myasthenia gravis.  (A tumor on the thymus gland is believed to be one of the causes of MG.)

Keeping Limits

Keeping these limits are helping.  I haven’t had a really bad crash since holding to my limits.  With 30-60 minutes per day I’ve decided I must prioritize my week and choose ONE activity for any given day.  (I mean, how much can you do in 30-60 minutes?)

I did learn the other day having a dentist AND a doctor appointment on the same day not only exceeded my limit, but I paid for it also.   I was thinking… how hard can it be to sit in the dental chair and sit in the doctor’s office?  Well, evidently, too much.  I suspect it was the walking from the car to the offices and back that did it.  Oh, and I also stopped to get a couple of items at the store.  Yeah… I overdid it that day.

Next Steps

It sounds like the next steps are the CT Scan, followed by 3 more weeks on the pyridostigmine and prednisone.  I then go back to the doctor to talk about the results of the CT scan and discuss if more changes need to be made in my medication.

In discussion with other myasthenics, this process can take up to 3 years to get things dialed in.  And then, the body is constantly changing.  Some people go in to partial remission once on a steady program (and by that, I mean they feel much better, but still have to limit physical activity), while others experience a tolerance to the medications and need other changes.

Either way, it is a lifetime of learning to deal with it.

Oh, and it’s official.  I now have handicap plates on my car.

Preliminary Diagnosis

Preliminary Diagnosis

With the help from some close friends (Matt and Becca), I was able to get in to see a neurologist sooner than September 20th.  Ironically, it was with the same neurological group with which I have the 9/20 appointment.

The neurologist connected a bunch of wires and did some shock stimulus and some needle stimulus tests.  At the end, he concluded that there is a very strong likelihood that we can eliminate ALS, and perhaps even Parkinson’s.  However, he’s leaning more towards Myasthenia Gravis (MG for short).

He put me on pyridostigmine and said if it helps me feel better, then I’ve got MG.  If it does not, we’ve saved time.  He still wants me to get an MRI which is scheduled for tomorrow evening.

PROGRESS!

Tractors

They didn’t have my medication at the pharmacy so it had to be special ordered.  (There’s very small percentage of people with MG.)  So, I’m hoping it WILL help (yeah, it’s kind of funny to hope I have MG, but I’m tired of living like this — constant pain and fatigue.)  Because it will be in this afternoon, I decided to take the grandson’s to see the tractors as I promised.  I figure that should wear me out and be a good test for this medication.

We went and saw the tractors.  Ricky (the owner) was there.  He remembered me and he let me drive a big OLD Farmall Tractor and I gave Brad a ride.  It was a hoot.  Brad will always remember today, that’s for sure.

His little brother was too frightened by the noise of that big diesel engine.  It was loud and rumbly.

Ice Cream and McDonald’s

On the way home we stopped at Toomey’s Corner and bought ice cream cones.  We then stopped at McDonald’s.  The idea was to take lunch home, but the boys ate their 10 piece nuggets before we got home.

After dropping everyone off at the house, I went and picked up my prescription.  I took my first dose around 2pm.  It’s now 5pm and I’m feeling much better than I have in a long time.

Placebo effect?

Perhaps, but the doctor says if it is, I’ll at least enjoy 2-3 days not feeling crappy.  If it really is MG, I should start feeling better in 2-3 days and it will stay that way.

Posting Dereliction

Posting Dereliction

I am guilty of posting dereliction.  Well, I guess if I’ve done so willfully.  (I guess it isn’t dereliction if it is unwillfully?)

When the scripture say the spirit is willing, but the flesh is weak, I fully understand how that applies to my case.  I would willing be outside working on the yard, painting the house, and a host of other things.  I planned to paint the house this summer, but at a last minute, decide it could wait for 2019.  Anything is better than doing little to nothing.

Granted

We take so much for granted, until we don’t have it, or the threat of it being taken away comes along.  I walked a couple of blocks with Natalie and the boys to watch the bed races.  It felt so good to be outside.  That was about 2 hours ago, and I’m starting to pay the price now.

We are led to believe exercise helps us recover.  I believe that’s usually the case, but in the case of things like ALS, Myasthenia Gravis, and a few other diseases, the opposite is true.  I want so badly for the doctor to tell me they figured out what is wrong, and the best thing for me to do is to work and exercise until I drop every day.  If that would pull me out of this, I would be doing it.

In the Meantime

In the meantime I struggle with what I should write.  There have been a few days all I would be able to say is, “I laid around all day and napped and watched a couple of TV shows.”

Yeah, that may not sound very good, but when your brain and body aren’t communicating to each other the way they are supposed to, it’s the best you can do.