The Adventure Continues…

Here it is October which is the beginning of Gary being able to spend more time outdoors. Heat is a huge enemy to the MG person. Gary notices that his muscles ‘melt’ when outside during the summer. Breathing even while sitting becomes labored not to mention walking or even being able to see! So, we are excited to be able to venture out into the outdoors now that the temperature is cooling down. 🙂

He has an appointment with his neuromuscular doctor in two weeks. They will do the preliminary blood work and urinalysis to determine if he can proceed with a new to him treatment Rituximab. We have heard and read that a lot of myasthenia patients have had success with this treatment and are excited to try it. Vyvgart has done about all it can do for now. We also discovered the pressure in Gary’s eyes has gotten high. With each dose of the four week treatments, the pressure would get higher. Once the last treatment (the 4th dose) was over, the pressure in his eyes would improve over time. I haven’t seen anything in the literature on Vyvgart about this or known if anyone else has experienced the same.

The downside to all these treatments is the lowering of the immune system. It doesn’t take much to get an infection. Gary has now been in the hospital twice with sepsis which happened by bacteria getting in through a cut on his arm. We caught this last one early as we recognized the signs(we are smart 😉 HA!). I can’t stress enough how important it is to have someone with you when you go to the hospital. Keeping up with what medications they are giving, symptoms, and what doctors and nurses are saying are all something another person should be in charge of for the patient. ALWAYS ask what medication is being given and compare it to your list. Too many times I have found them giving Gary the wrong medication or even the wrong dose. I have a list of medications that MG patients should not take or take with caution and have printed out many and hand them to the doctors. I spoke to our pharmacist who said to bring a copy to them and they will also help us keep track. You can find this list at https://www.myaware.org/drugs-to-avoid We did have a WONDERFUL team of nurses and the ER doctor and nurse were the BEST!

As of now Gary is taking Mestinon, Prednisone, and Vyvgart for his Myasthenia Gravis. His symptoms are double vision, weak right eye, poor balance, breathing difficulties, difficulty swallowing, all over muscle weakness, and extreme fatigue. While this sounds bad, he has learned to live with it and goes about life as if none of this was affecting him. He still has that smile, the jokes, and the positive can-do attitude. 🙂 He has learned lots of techniques to help him do what he wants to do: walker/cane/wheelchair, naps, pineapple juice for the phlegm, and cold drinks when swallowing pills or food. I think I mentioned moving his showers to morning/early afternoon while he still has strength has really helped. When he knows he will be going somewhere, he makes sure to rest and save his energy for that day which has worked great. Unfortunately Medicare did not approve the portable NIV since he already has his main NIV. We figure that is Gods way of telling us better days are ahead! 🙂

We are excited to be going to the MGFA Regional Conference here in Houston this Saturday. Am sure we will be learning lots of new and innovative things and will certainly share on here. 🙂

Gary still continues to work at his consulting job and attends business meetings out and about. He may have slowed down, but he hasn’t stopped. I so admire his humor and strength, but most of all his faith. ❤

I smile every time I think about how he responds when people ask how he is doing. He always says, “I’m great! Compared to what other people are dealing with, I AM BLESSED!”