Hard to believe January is almost over! As always the rollercoaster adventure here continues. Gary saw his pulmonary doctor who wants to do another breathing test but has agreed to wait until summer with hopes Gary will be more stable.
Mid January brought an MRI on Gary’s spine. We have an appointment February 9 to see what is causing his lower back pain.
Today we met with his new neuromuscular doctor and left there feeling excited about the future.
Right now Gary is using his cane. I personally think he will use that cane even when he no longer needs it! HA! We have had discussions that the cane is for stabilization…NOT pointing at objects, pushing elevator buttons, or swinging it around like the hands on a broken clock! Never a dull moment with that man! 😉 ❤
Current symptoms: lazy eyes, difficulty breathing with exertion, and balance unsteady. He has great difficulty with self help items such as getting dressed/undressed, shoes, getting in and out of the car…things that the regular person doesn’t think anything about when they do them. The doctor today is determined to work on those areas. Vyvgart seems to be helping his swallowing and the Elmer Fudd voice which we haven’t heard in quite some time. He is currently 4 weeks on Vyvgart/4 weeks off. The biggest side effect we have noticed are the infections he gets during the 4 week infusions, mainly throat and sinus. Thank goodness for antibiotics! Blood work was done today to see if he can take an additional medication which could help even more…Azathioprine (Imuran).
He continues to work with his consulting business staying VERY busy, and of course we spend lots of time at the “beach house”. He continues to remind this disease that God is in charge, and he refuses to let MG get the best of him. I love going places with him as he leaves a trail of happiness everywhere he goes. ❤
This morning Gary and I talked about our “Life Book”. Some chapters have been sad, some happy, and some very difficult to get through. However it’s one we cherish and are so thankful to be writing it together. As Gary reminds us all daily in the way he lives his life….
We Are Blessed!
i am blessed 
I think of you two very often. You are doing such a great job taking care of Gary!! Thank you for sharing via your via your blog.❤️🙏💪🏼
LikeLiked by 1 person