Monthly Archives: September 2018

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.

Nearly Two Weeks

Nearly Two Weeks

It’s difficult to believe it is nearly two weeks since my last post.  Natalie and our grandsons went home a couple of days ago, and it was a joy having them here.  At the same time, it was a huge help having Natalie around.  Time sure flies.

When thinking about my blog the other day, I thought… I don’t have a lot to update.  My days lately are spent resting mostly.    Aside from the digital art I work on, it’s been a pretty lazy summer (and not by choice.)

Watkins Glen

I did manage to go to Watkin Glen with Natalie and the boys.  I made it to the 2nd set of stairs and had to turn and go back.  My feet weren’t working properly and I didn’t want to ruin everyone’s day by falling and getting hurt.

oh well

We Tried to Cover His Name, but, Oh, well.

dbwalton

Yeah, Cover the Crook’s Name Please

Cheesy Smiles

Cheesy Smiles

Natalie and Boys

Natalie and Boys

Current Adaptations

My current adaptations may change with my next doctor visit.  We’ll talk about adjusting the pyridostigmine and what activities I should and shouldn’t be doing.

 

Making Adaptations

Making Adaptations

I find making adaptations necessary given my prognosis.  Whether it is myasthenia gravis, lupus, ALS, diabetes, etc… they say if you don’t manage it, it will manage you.  I’m learning how to manage it.

My dad, upon learning I have MG, sent me 4 books on the disease.  I just finished reading 2 of them.  Elizabethe read one of the other ones while I was reading these two.  Comparing notes, they basically said the same thing – learn what works for you as far as a daily schedule, manage what you eat, get plenty of rest, don’t over do it, communicate with your doctor, etc.

Speaking of the latter – communicating with your doctor…

One of the last things he said to me was, “And, whatever you do, don’t lie to me.”

I wondered if he thought I was pulling his leg regarding one of my symptoms, but I knew I was being completely honest with him.  There was one symptom, I thought I would find odd if I were him.  It was water getting stuck in my throat.  Not solid food, but plain water gets stuck.  Then, when reading one of the books the author noted choking on thin liquids as being a symptom.

Daily Tasks

I’m starting to learn I should limit myself daily to one major task.  A major task right now is anything requiring me to be on my feet exerting myself – mowing the lawn, doing a photo shoot, going to the stoor, attending a meeting, etc.  If I try to do more, I pay for it during the night and the next morning… or longer.

Over doing it sneaks up on me.  I can’t wait until I’m mid task and decide I can’t do any more.  I’ll feel okay, but then I’ll stop for a bathroom break, and then it will hit me.  When it hits, it hits HARD.  This is what I have to learn is how far I can go so that doesn’t happen.

What It Is Like

What is it like having myasthenia gravis?

They say it is different for each person.  It’s nickname is the snowflake disease.  Every snowflake is different, so is every MG patient.  Here is what I go through…

  • My vision starts to “quiver”. It’s like my eyes are vibrating (is the best way to describe it).  It creates a little blurriness in my vision.
  • Twitching under my left eye,
  • Flu-like aches and pains all over the body,
  • Arms and legs always feel like I finished a big workout,
  • Clumsiness,
  • Loss of control and strength of my fingers, arms, legs and feet,
  • Strong spasms (muscles knot up in to lumps the size of a marble or as large as a golf ball – very painful),
  • More coughing and sneezing,
  • Brain Fog,
  • Occasional aura migraine flashes,
  • Difficulty sleeping (because of the pain and spasms),
  • Tinnitus,
  • Problems swallowing water, milk, and most other non-carbonated liquids (the carbonation seems to help).

As a result, I’m worn out from the time I wake up, until the time I go to sleep.  Exercise makes things worse (in fact, it causes muscle damage in people with MG).   Relaxation and sleep are the most rejuvenating activities.

Comparing with Other MG Patients

I’ve joined a group of men with MG, and I’m reading some books written by people with MG.  We all have one thing in common as far as our symptoms – fatigue.  Fatigue and weakness are the biggest complaints.  As a result, there is a common thread of longer-than normal sleeping and mid-day naps.

Other Adaptations

I’m going to have to start reducing the clutter and getting rid of things I don’t need, don’t use, and most of all, things I cannot use any more.  With MG it doesn’t pay to have big aspirations to take on a big project.  So, if they are things associated with big projects, I’m getting rid of them.

Life will have to be simpler from here on out.

Blessings

I’m counting my blessing.  MG has not affected my ability to type or play the piano.  It has not impacted my ability to chew my food.  It has not distorted my face.  I have not gone cross-eyed.

In spite of the brain fog, I can type (write) (given quiet time).  However, I’m doing less blogging because it is mentally exhausting and tiring.  For now, I’m thankful when I have moments that I don’t feel out of it.

Picking up my 2 year old grandson today made me grateful I had the strength to pick him up.  (He’s quite the chunk.)  The other day, I couldn’t move a door that was simply leaning against a shelf, and a few days  later, I couldn’t pick up the aluminum step ladder.  So, I’m grateful for occasionally being able to hold my grandchildren.