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…

First Monday Friends

Today I was visited by several First Monday Friends. The first Monday of every month I host a free photography get together. Last month, I must have been inspired to do a video day.

First Monday Friends

Today I was visited by several First Monday Friends.  The first Monday of every month I host a free photography get together.  Last month, I must have been inspired to do a video day.  This month, I didn’t have to cancel or ask someone else to host it.  I just had everyone come in to the sitting room and watch some photography videos with me.

It was really nice.  We watched 2 3o minute segments and paused the video every once in a while to talk about what is going on and answer questions.  I think the group really liked it.  I know I did.  (First Monday Event is an event hosted by Palmyra Photographic Workshops http://www.palmyra-ny.com )

We had plenty of door prizes from sponsors so everyone went away with a nice prize.  Bay Photo Labs, Macedon Chiropractic and LensPen all contributed wonderful prizes.

After they left, I worked on my computer rating some photos and stuff.

I don’t know if it is because of my injury or what, but comes 6:30pm and I feel like it is 10:30pm.  Tired, and beat, I’m ready to go to bed.

Kids Say

Art Linkletter was one of my favorites. He had a show, “Kids Say the Darnedest Thing”, and it always had me laughing.

Church today was no exception. I loved how a child announced it was her birthday and admonished everyone to wish her a happy birthday.

Kids Say

Art Linkletter was one of my favorites.  He had a show, “Kids Say the Darnedest Thing”, and it always had me laughing.

Church today was no exception.  I loved how a child announced it was her birthday and admonished everyone to wish her a happy birthday.

The other day I saw a family and the youngest told me she was 4 and soon she’d be 5.  I asked her, “What happens when you turn eight?”

She responded, “You have no more birthdays after 8.”

Again, funny when taken in context.

Kids do say the darnedest things.

—–

The elders were our dinner guests tonight.  We (Elizabethe made the soup base) made a cream of scallion soup and I made a scallion, bacon, corn and cheddar cornbread.   Just normal cornbread with some crispy bacon sautéed with the scallions, some frozen corn, and about 1/2 cup of grated cheddar cheese.

Today has been terribly muggy.  When I woke this morning it was 80 and raining.  It felt like a steam bath outside, and the heat and humidity have lingered all day.  The only escape from such weather is air conditioning.  The dehumidifier in the basement is pulling a few gallons of water each day.  I figure we empty about 7 gallons a day from the thing.  (This is just water that’s in the air!!!)

Cleaning Closure

No temple today because of the cleaning closure.

I spent the entire evening meeting with a client about their new website. No, this is not a potential web site, but one that has been built using images I shot for them. It is exciting to see our work being used in a site that is going to get millions of hits a year.

Cleaning Closure

No temple today because of the cleaning closure.  I spent the entire evening meeting with a client about their new website.  No, this is not a potential web site, but one that has been built using images I shot for them.  It is exciting to see our work being used in a site that is going to get millions of hits a year.

During the meeting, one of the client representatives said they came across many stock images and said, “I bet db walton can do better.”  (Italics added.)

Elizabethe was quite excited during the demonstration of the web site.  She says I’m just being modest, but she’s right.  It is a big deal.  It’s a huge deal.  People all over the world, once this site goes live, will be looking at my work, and if they look at the credits on the site they will see my name mentioned several times in conjunction with the many photos I supplied to them for this massive project.

I can’t tell you more, but when it goes live I will be posting a link.

Let’s just say that photography by db walton llc has taken a giant leap forward.

—–

We had dinner with our guests at Empire (again).  This time, I ordered the Juicy Lucy Black and Blue.  A burger stuffed with blue cheese and bacon.  Whoa!  It was GOOD.

Elizabethe keeps ordering chicken dishes and wasn’t 100% thrilled, but hey, I figure you can never go wrong with a burger.

 Today was quite a busy day, and it looks like tomorrow will be too.

Good Morning Philadelphia

I got up and took a walk around the old part of Philadelphia.  What a beautiful area.  So much history!

As I walked behind Liberty Hall I was overcome with sadness.  It really hit me hard.  I guess I was sad because so much of what those men and women in the 1770s fought for has been lost.  We have judges and elected officials that have just trampled the U.S. Constitution.

There was a sad irony of a banner that announced an exhibit about spies and “traitors”.  There are men and women serving in Congress that would have been tagged as traitors in the 1960s.  Yet, today they waste our money spending us in to bondage.

I cannot describe the degree of sadness I felt.  I remember visiting Philadelphia in the 1980s.  The feeling I had then when I visited the hall where our forefathers sat was one of reverence and peace.  Today, it was one of fear and sadness for what might be coming our way.  I didn’t even want to stick around and sightsee; I just wanted to get away from there.   And, interestingly, that sadness left as soon as I passed the last Federal building (the Philadelphia Mint).  After that, I was fine.

Interesting, eh?

We left Philadelphia and headed back home.  We pretty much drove straight through. 

It’s been a long day.

PNE – Day 3

Another day at PNE.  Classes started at 8 a.m.  I went to a class by Don Chick on lighting.  Don really knows his lighting.  It was great.

Then, I went to a class by Michael Grecco about lighting.  Michael has a different style than Don.  Don is great for the portraiture stuff.  Michael’s stuff is more edgy and more up my alley.  Both were great.

I skipped the parties and stuff in the evening.  Again… not my bag.  I really wish they would either have an opening party, or a closing party, and use the time gained for more classes or workshops.  But, that’s me.

We’re Off to New Jersey

We hit the road this morning around 9 a.m.  We stopped at Sauder’s to purchase a few snack items (mostly candy).  From there we drove across to Syracuse and then south. 

We stopped at the Oakland Township (formerly Harmony, PA) so Elizabethe could see the Aaronic Priesthood Restoration site.  I stopped at the old Hale homestead and took some photos.  It appears the church might be excavating the old foundation.  They had it taped off so people would not disturb it.

From there we headed south through Scranton, PA, and then over to New Jersey. 

We arrived in Woodcliff Lake, NJ, around dinner time and found there was hardly anyplace close to the hotel for food.  We found an Olive Garden and ate there.

Talk About Disorganized

We had a great group of guys show up to help Enrico and Louise move.  We were all ready to go, but the truck rental place was not.  Talk about disorganized.  It took the guy over 90 minutes to get the truck ready for us to take.   It seemed that this guy was driven by distraction – every distraction.

We finally got the truck and got their storage units emptied and everything moved in to their new place.

Mirror

 

—–

Elizabethe and I went to Sauder’s.  I sure love that place.  We bought seeds for sprouting, and some baking supplies as well as some cheese and ham hocks.  Oh, I shouldn’t forget… cinnamon bears too.

Bears...mmmmm

I baked some bread and we enjoyed some grilled cheese sandwiches on home made bread.

Bread

Endowment Day

We stayed last night at my brother’s house. We got up early to get to the Mt Timpanogos Temple were Natalie and Amber would receive their endowments.

It was quite wonderful to see 4 of my 5 daughters there. Plus, as an added bonus, Chris had made it back from Iraq to be there too.

After the temple we went to Bedeo’s for lunch. While there, Rebecca recorded a phone call from her stake president telling her that Chris and her have been cleared to be sealed.

Immediately after the announcement, the girls started begging Bethe and I to stay. After several phone calls, we arranged for coverage at work and rescheduling of flights and rental car.

It was then off to take some bridal shots of Natalie.

We took some photos of Natalie at Cabela’s. This one I grabbed with my iPhone to post for Jeff and Kathy.

We ended the day with Brianna’s blessing. It was well attended and a wonderful way to end such a wonderful day.