A Lot Has Been Written

A lot has been written about myasthenia gravis, but little has been written from the standpoint of what it is like to have myasthenia gravis. I read this in a health article about the disease that went on to describe what it is from a medical standpoint. They are right. Much has been written about what the disease is and various ways of treating it, but few have written about what it is really like.

Perhaps that’s why I have it. To tell other what it is like. In so doing, I realize I will be disclosing information that is specific to me and the form (double-seronegative myasthenia gravis) that I have.

Realizing Something Was Seriously Wrong

After a bout of the H2N3 flu virus, I still felt like I had the flu. I just didn’t have the fever and nausea. All of the other symptoms remained. The logical conclusion was I was out-of-shape and needed to work my way back to getting in shape. After all, I just spent 3 weeks in bed with the worst case of the flu I had ever had.

My wife, who has always been in less physical shape than me, had recovered fully and was back to her normal self. This was discouraging. So, I’d go for a walk around the block in an effort to get back in to shape. However, I’d come home and I would have to go straight to bed because I felt so weak and exhausted. It wasn’t the type of exhaustion where I was out of breath, but the type where my muscles were telling me they have no more strength.

I began falling and tripping. Occasionally the room would feel like it is spinning. It was like someone had drugged me, but I wasn’t sleepy, just dizzy and tired.

Next came tremors. I’d attempt to unwrap something and my hand would go off in uncontrollable movements. I couldn’t will it to stop, nor could I force it to start. (This type of movement is called dystonia.) Or, I’d just be sitting and happen to notice my thumb moving back and forth (i.e. a tremor.)

Internet Search

I started searching the Internet looking for clues. I’d find one diseases, and I’d start noting the symptoms that I had, but when I’d come to symptoms that I didn’t have, but were common to that disease, I’d go looking at the next.

At length I came to the conclusion I had ALS (Lou Gehrig’s Disease). And, here is what I read (from WebMD):

Some common early symptoms include:

Stumbling
A hard time holding items with your hands
Slurred speech
Swallowing problems
Muscle cramps
Worsening posture
A hard time holding your head up
Muscle stiffness

I had every one of those symptoms. Plus, I had some of the more advanced symptoms. The more I read about ALS, the more I was convinced I had it and I probably had 1-6 years to live.

Convinving Me to See the Doctor

My wife would say, you should see the doctor. In the back of my mind I was thinking, ‘Why waste time and money to be told you’re going to die?’

Finally, as I lay motionless on the bed my wife asked, “Why won’t you set up an appointment to see the doctor?”

My reply, “Because I’m afraid of being told this is something really bad.”

She then said, “In what universe does that make any sense.”

The General Practitioner

My general practitioner listened to everything I had to say, and checked some vitals while asking me to perform tasks like touching my nose, pressing against her hand, etc.

After her answering her questions and letting her do some simple strength tests she said, “Well, my first guess is myasthenia gravis, followed by Parkinson’s and followed by M.S.”

In my research, I had come across myasthenia gravis, but brushed it aside because MOST of what you read about the disease talks about ptosis. While ptosis is the most common visible symptom, it doesn’t begin to describe the rest of the disease.

She began having me do blood test after blood test (48 in all), as part of a way to eliminate certain disease that can be detected through blood tests. She actually tested me for antibodies that are commonly found with MG, but when they came back negative she told me it is possible to have a false negative with MG.

She also told me to see an Ear-Nose-Throat specialist and a neurologist. I set up both appointments that day. This was in May, and the ENT couldn’t see me until the end of August and the neurologist couldn’t see me until the end of September.

The ENT

The ENT was looking for throat cancer and problems that would account for my speech difficulty, swallowing problems and breathing problems. He concluded my problems were neurological in nature. He based that conclusion on observing that my vocal chords were half paralyzed.

The Neurologist

A friend in the medical profession helped me get in to see a neurologist one month before my schedule appointment. Her argument was this could be a brain tumor or stroke. While I didn’t think it was either one, I was grateful that she pushed to get a doctor to see me immediately.

The neurologist did a bunch of simple tests, and then took me to a room where he wired me up and performed an EMG and SFEMG tests. They were painful and were akin to torture, but necessary to diagnose this disease.

At the end he concluded that I have double seronegative myasthenia gravis. The confirming test would be to see if I respond to pyridostigmine (Mestinon).

The Drugs

Within 12 hours of taking the Mestinon I started noticing relief from some of the symptoms. However, the drug’s effect is rather short lived. After a month on it he also started me a prednisone to suppress my immune system.

The two help, but aren’t a cure. It requires consistent, frequent doses of both drugs.

Living with Myasthenia Gravis

It’s been about nine months since being diagnosed and being on medication for MG. What is it like living with MG?

Strength

First, MG robs you of strength. Not all at once, and not over the entire body. For example, today’s first frustration was unplugging my electric razor from the charger. I couldn’t do it with my right hand. My hand was too weak, so I reversed how I was holding the razor and my left hand was able to do the job.

Sometimes there is no warning. In the back of my mind, this is frightening. I’m always wondering at what point does a major large muscle stop and cause me to have a serious fall?

It’s a valid question, and one asked by many of my fellow myasthenics.

You try to go on living like that isn’t going to happen, and on most days, it doesn’t. Most commonly, the lack of strength occurs when you try to do something, and you simply can’t do it. That can be opening a pill bottle, tearing open an envelope, pushing a door open, buttoning your shirt, cutting your food, etc. You don’t know until you try, and then you keep trying, and then you try plan B (whatever comes to your mind), and when that fails you ask someone else to help you or do it for you.

Twice now I have had to ask people sitting near me to open my pocket pill container. Yes, it is embarrassing, and sometimes you may feel humiliated.

Losing your strength to do simple daily tasks is frustrating, discouraging, embarrassing, humiliating and for me, one of the worst symptoms of this disease.

Energy

Energy (or stamina) is by far the most common symptom myasthenics have. When I hear people talk about chronic fatigue syndrome (CFS) I think myasthenics can fully relate. MG isn’t CFS, but CFS is the most common symptom of MG.

I woke this morning and I realized I would be spending my entire day resting. After a good 10+ hours of sleep last night, I woke AWAKE but physically drained of any energy.

I forced myself to do a little house work in the room where my wife was packing things up. I took the broom and swept about 8 linear feet and realized I was done for the day. It might have well been a 50 mile bicycle ride. Every muscle in my body was saying, “STOP. We’re done. We have no energy or strength.”

Pain

You can read stuff that says MG is not painful. I had this discussion with my neurologist, and he kindly explained the actual neuromuscular junction activity we call MG isn’t painful in itself. However, MG results in pain due to over-compensated muscles.

I asked a few thousand people in my online MG group about pain. Only a few responded they don’t have any pain. So, for most of us, pain is a way of life.

The physical pain I feel as a result of MG I can now predict. When I feel a muscle getting weak, and I ignore the symptom and push myself, I can predict that the compensating muscles will hurt beyond any pain I have ever felt before.

The worst case of this occured last week. I was showing a couple of young men how to move a bookshelf. While I was letting them do most of the work, I pushed myself beyond what I should have done.

That night I had a pain in my back that was unlike any back pain I have ever felt before. The pain was so intense the tears flowed. Over the counter painkillers didn’t do anything. I increased my prednisone and laid in bed for the next 16 hours.

I’ve had similar pain in my neck because it becomes difficult to hold my head upright. Sometimes you have no choice because there’s no place to lay down.

For these reasons, I have to limit time away from my bed or special chair. If I don’t, the next morning I WILL have muscle pain so bad in the back of my neck and head that it brings me to tears.

… to be continued…

Getting Ready to Move

That’s right, we’re getting ready to move. My plan is to include beckwithmansion.com with the house when we sell it (providing the new owners pay for the domain transfer.)

That’s right, we’re getting ready to move. My plan is to include beckwithmansion.com with the house when we sell it (providing the new owners pay for the domain transfer.)

Having this disease has made it necessary for us to downsize and move closer to family. We’ve already put money down on a lot in Utah that is close to several of my daughters and some of Elizabethe’s sisters. We hate to leave Palmyra and this beautiful home, but it is the right thing to do.

Accomplishments Before Getting Sick

To show an attitude of gratitude I want to list some of the things we’ve done since moving to Palmyra…

  • Operated a successful tourist home – in the process, we met some wonderful people. Some of them celebrities, and others just downright nice folks.
  • Owned a commercial property with very little vacancy periods.
  • Served a 5 year mission for Church Publishing Services – during this time (and even now) I’ve had many photos published in church magazines and websites. Just this last General Conference issue had one of my photographs.
  • Ran a successful photography business – photographed lots of people, several weddings and had a great time.
  • Documented NY Route 31 in photos
  • Did a Route 66 end-to-end road trip that took 30 days. (This was just a few months before getting ill.)
  • Three trips to Israel!!!
  • Survived getting hit by a car as a pedestrian.
  • Served the entire time in the Palmyra Temple as an Ordinance Worker.
  • Served 8 years as the Palmyra Ward Organist.
  • Visited by many family members and friends and took them around Western New York.
  • Several day trips to NYC (by bus) where I photographed models and did street photography.
  • Made more friends than I ever imagined.
  • Saw my best friend of 30 years and his wife join the church, go through the temple, and then he passed away.
  • Met hundreds of missionaries.
  • Photographed several general authorities, including several apostles.
  • Met John Bytheway and spent an afternoon talking to him and his family.
  • Worked security every year at Hill Cumorah.
  • Was VP, then president of Finger Lakes Professional Photographers.
  • President of the local Chamber of Commerce – Canal Connection Chamber of Commerce – worked on the re-branding of the Chamber.
  • Hosted a really fun Walton Family Reunion – so, none of my extended family attended. It was just 3 of my daughters and their children, but we had a BLAST.
  • Had pictures published in Waterfalls of New York Calendar (2017).
  • Attended PPSNYS Workshop at Hobart and William Smith Colleges for the last 6 years. (Last year I was already sick, but managed to sit through the classes. Decided that would be the last year given it’s too much to handle with MG.)

Rough Winter

It has been a rough winter. The temperatures have been colder than normal, and longer than normal. But, that’s not the worst part.

It has been a rough winter. The temperatures have been colder than normal, and longer than normal. But, that’s not the worst part.

The worst part is cold aggravates myasthenia gravis. It intensifies the symptoms, but so does heat and humidity. I tell you, there’s no winning with this disease.

To top it off I got a sinus infection that moved in to my lungs as a result of the cholesterol medication I was on. I never wanted to go on the stuff in the first place, but was convinced it would be okay.

There are a four doctors in Argentina who are theorizing that statin drugs can CAUSE myasthenia gravis. Well, in my case, I know know it made it worse.

Selling Stuff

We are in the process of selling stuff. Elizabethe’s doing most of the work because my brain just won’t focus. Brain fog (as I call it), or cognitive dysfunction (as doctors call it), seems to cloud my ability to pay attention to details. That’s not good when doing financial transactions.

We are in the process of listing the building downtown for $135,000. The good thing is, it is one of the few properties that have been on the market that is a steady money maker. It brings in about $30,000/year net!!! Thus, it will pay for itself in about 4-5 years.

I’m not sure when we are going to list the house. We’ll probably list it for $350,000.

Before we list it, we’ll entertain offers under $350,000.

Concern for the Future

I have a great deal of Concern for the Future. The main reason why is there are so many people who don’t understand the meaning of certain social, economic and political terms. So, here goes…

  • Conservatism – A political doctrine where someone resists changes and holds to traditional, time-honored values. In the U.S.A., this means they resist changing the Constitution, honor religious values (as protected by the 1st Amendment), freedom of speech (again, as protected by the 1st Amendment), etc. Someone who follows this ideology is called a “Conservative”. What it is not: It is NOT fascism.
  • Liberalism – A political doctrine where someone pushes for change if it doesn’t suit the current trends. In the U.S.A., this means if you don’t like guns, change the 2nd Amendment of the Constitution, if you don’t like what people say, change the 1st Amendment, etc. Someone who follows this ideology is called a “Liberal”.
    What it is not: It is not caring for the poor and needy.
  • Socialism – a form of government where the government controls the production of goods and services. There are two types of property – private (homes, cars, etc.) and public (factories, stores, etc.) The rule of law is usually a consortium of people.
    What it is not: It is not caring for the poor and needy.
  • Communism – a form of government where the government owns the means of production and services – an extreme form of socialism. Nobody owns property, real or otherwise. The rule of law is usually a dictatorship.
    What it is not: it is not what Christ taught.
  • Capitalism – a macro-economic system where businesses operate without government interference. Owners are individuals, partners, or a group of investors.
    What it is not: It is not greed.
  • Authoritarianism – a form of government where laws are so strict the citizens feel they have little choice. Consequences are usually harsh and contrived. Example: Heavy fines for parking in a handicap space.
  • Totalitarianism – a form of government so harsh that citizens are jailed or executed for breaking laws. Example: Countries where you can be executed for extramarital sex.
  • Libertarianism – a form of government where there is very little government involvement.
  • Democracy – a government where the majority rules.
  • Republic – a representative government where an elected body (like Congress and the Senate) create laws.
  • Constitution – the ultimate law of any organization. Other rules or laws may be created, but they cannot contradict the laws of the constitution.

Boring

My Life is Now Boring

That’s right, my life is now boring.

If you have been wondering how I went from a regular daily posting (only missing a few days) to only posting about once a month, it’s called myasthenia gravis.

MG has been controlling my life while I attempt to learn how to control it. Well, one really can’t control it, but what you do is learn to live within your limitations — or so I’ve been told.

A couple of days ago I thought I was SuperMan. It turned out I was SuperMGan (the G is silent). I felt great until all at once, the symptoms struck. They hit so hard and fast I thought I might die.

MG is a silent attacker. Sometimes it gives warnings. For example, I’ve learned if I start losing my voice, it’s going to hit hard in the next day or two. However, if I’m not doing much talking, it can hit rather rapidly.

I wish I could write about exciting things I’ve done lately. Right now, trips to Israel, exploring waterfalls, visiting unique places and photographing them is out of the question. I get about 60-90 minutes a day of being on my feet. The rest of the time is spent reclined in my special chair or completely reclined in bed.

I find myself re-living past adventures through the photographs I took. I used to wonder why I use so much hard disk space with images from the past. Well, now I’m glad I did. I can look back and say, “Wow, that was a fun time. I’m glad MG waited so long before it knocked me back.”

Better days are ahead, however, they will be different. My doctor recently told me it is a disease to be respected and I have to learn to limit myself. The other day I didn’t do that. I should have stopped and said to myself, “I still feel like I could do more, but if I did, it could land me in the E.R… or even worse.”

Mentioning this to a fellow myasthenic, he said he did too much about a week ago and has been in the hospital ever since. They have him on blood transfusions to rid his blood of the acetylcholine esterase. It’s kind of like dialysis. They remove your blood, filter it, and put it back inside. It’s one of the few last-resort treatments for MG in a crisis situation.

I don’t want to be in that situation.

I asked my wife to be my voice of reasoning. She has my permission to say something like, “Okay, you spent an hour in the kitchen making a cake. You’re done for the day. You need to rest the rest of the day.”

My agreement was to listen and abide.

She doesn’t want me dead, and I don’t want to end up in the hospital.

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 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.

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

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.

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

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.

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.