Month: June 2016

2012 – While driving one day, the white lines on the road seemed to multiply and I wasn’t sure of the lane I was driving in. Shook it off and went home. The next day I was playing golf and while looking down at the ball noticed that there were 2 balls… not a ball and a shadow but 2 balls. I had to reach down to determine which one was real.

Since I was experiencing vision issues I went to an ophthalmologist. She sent me to a neurologist. Neither doctor knew what was wrong. After multiple visits the ophthalmologist sent me for a blood test which provided her with the information to properly diagnose me with ocular Myasthenia Gravis. She said I should take the test results back to my neurologist – which I did.

The neurologist prescribed 40mg of prednisone and 60 mg of mestinon 4 times a day. My symptoms went away. The doctor weaned me off the prednisone and after a while the double vision returned. He increased my mestinon to 120mg 4 times a day and my double vision ceased.

I was on the medication for a few years, no more double vision, and continued all my activities as before. I did not think about MG or was concerned about it. Subsequent follow ups with the neurologist consisted of checking for arm and leg weakness…there was none. I was fine.

But in October 2015, I started to have some swallowing issues. Nothing too dramatic, just sometimes I had a problem swallowing a piece of food and I would regurgitate it to clear my throat. Planning on going to see family in Colorado for the holidays I self prescribed some prednisone for myself.
No big deal, right?

I developed a cold but still flew to Colorado. The temperature when I boarded the flight in Florida was 87 degrees; when I landed in Denver it was a mere 6 degrees.

Over the next 24 hours my swallowing became more difficult, my cold got worse and eventually I had my daughter take me to the ER. While answering questions checking into the ER my voice started to slur to the point that I was not intelligible. I was admitted into the ICU with pneumonia, and because I told the ER doctor I had ocular MG, he had a neurologist see me. By then I could swallow nothing, speech was labored and my oxygen level dropped.

Although they attempted to give me medication with apple sauce, pudding, etc…. I could not get it down. They eventually put a tube down my nose into my stomach to provide me with medication and nourishment. I fought off being intubated and kept my oxygen level up to an acceptable level. I then had IVIG every day for 5 days, they gave me 120 MG of prednisone (and told me to go off it when I left the hospital), 1000mg Cellcept 2x a day and gave me antibiotics to fight the pneumonia.

I remained in ICU for 7 days and a regular room in the hospital for another day. MG was no longer no big deal. I rested in Colorado for another week before flying back to Florida.

Since then, I am now on 20 mg prednisone and still on the 120 mg Mestinon 4x a day as well as the Cellcept, I see an MG specialist and am plugged in to a local support group.

I feel I have a new normal now. I play 9 holes of golf twice a week, limit my other outdoor activities and rest when I can. I eat softer foods, and much slower. I have not had a steak since 2015, as my chewing gets difficult after a while. I also eat earlier than I used to. (Nothing but soft foods, i.e. pudding, yogurt, etc. after 7pm.) When I look at a menu, I do not look at the description of the food as much as thinking about how chewable it is and whether or not I could swallow it.

There are some days when I just feel weak. Since I am retired – and no commitments to speak of, I am able to take those days as my body needs me to and just take it easy. I limit my evening activities and sometimes will be out with friends and just participate by listening. Whereas I was once the center of attention, dominating conversations I now limit my talking in the evening. I still sometimes have slurred speech but nothing I can’t deal with.

I have MG and am very conscious of it.
I think before I act and live with a “new normal”.
MG is no longer just no big deal.

– Stan Kotzker, Myasthenia Gravis Warrior

Story edited by: Rebekah Dorr

I Am Not The Same Person As Before MG

MG Unmasked: What is Myasthenia Gravis to you?

Tyler: Myasthenia gravis is a neuromuscular/autoimmune disease that affects the way I walk, see, smile, and breathe. It is a disease that completely changed my life in both good and bad ways. It not only affected my physical being, but my emotional and mental being.

MG Unmasked: How has it changed your life both positively and negatively?

Tyler: MG has changed my life in many ways, both positively and negatively. On the negative side I struggle with daily tasks, I’ve lost friends, and I can no longer do things spontaneously. I struggle with walking quite a bit and use a cane. Most of the friends I had before I became ill slowly faded out of my life. They just don’t understand MG and what it’s like to live with a chronic illness. They expect me to be able to do everything I used to do and I just can’t. That has been difficult for me at times. I would love to be called the day of and go do something with friends or just hangout, but I can’t really do that anymore. Everything must be planned out, is it an accessible place, are there stairs/elevators, will I have to walk far, will I have to stand or sit for too long, can I drive there (how far is it) and is there handicapped parking?

On the positive side, I have met so many wonderful people that have been extremely supportive and helpful with my questions. I have gained access to what sometimes feels like an exclusive club, the MG community. Another positive thing is that I’ve slowed down (against my will) both literally and figuratively, and have learned to appreciate the little things in life. I’m so grateful to have met such wonderful people that not only understand MG, but understand me too, like my online friends, but also some friends from college. They’re the best. Do I wish I wasn’t sick? Of course, but would I change my experience? No.

MG Unmasked: MG hasn’t kept you from pursuing a college education. How do you make that work for you?

Tyler: Before my diagnosis, I had started my undergraduate degree, a BS in Computer Information Systems and Technology. I was a very active member of my campus community, participating in various activities, being president of our LGBTS Alliance, serving as an orientation counselor to incoming students for a few years, working a work study job, and taking 12 credits (full time) per semester.

While trying to get diagnosed, I was stuck using a powered scooter to get around our campus, even though it is tiny compared to most. My grades slipped a little and I had to withdraw from most of my courses, but I stayed in school throughout it all. I was determined to finish what I had started, taking just 3 credits a semester in an effort to get the 120 credits needed to graduate. I was also still in my work study job, however I soon had to quit as I couldn’t make it to work much and do one class a semester.

After my diagnosis, I’m still in college part time taking 3 to 6 credits a semester. I do receive accommodations and my professors are usually very understanding of my illness. I ask for leniency with attendance and occasionally extensions to get work done. I live on campus with an amazing roommate. He’s very understanding and accepting of my illness and me in general. He does a lot for me, including cleaning the dorm (most of the hard work), and taking out the trash and recycling as I can’t carry it long enough to get to the dumpster/recycling bins. While I have slowed down quite a bit, I’m still president of the LGBTS Alliance which is often a lot of work, but my fellow officers are very helpful and often take over when I can’t be at an event or meeting. I’m also part of a diversity committee to the president of our campus and have been since it was formed in 2013. While I occasionally need my powered scooter still, many days I get around with just my cane. Overall college is a lot of work, but I’m determined to finish what I started and that determination is what drives me to keep going.

MG Unmasked: What advice would you offer someone else with MG who is trying to achieve their dreams in spite of it all?

Tyler: My advice would be to take it slow, know your limitations, and ask for help whenever you need it. I understand that may take some time, but I personally believe it is necessary in order to keep going.

MG Unmasked: What do you wish others understood most about MG and your life now?

Tyler: I wish others understood that I am not the same person I was before my illness. Any chronic illness can change your entire being. I wish they understood just how difficult it is to be exhausted all the time, to be weak most days, and still have to function. I wish they knew the fatigue that comes with myasthenia gravis and the fact that it is a chronic illness that is not going to go away.

Written by Rebekah Dorr of Myasthenia Gravis Unmasked.
Interview may be shared with credit to original author.

Tyler Morris, Myasthenia Gravis Warrior