Gary’s smile, his humor, his positive attitude as he faces life with this unexpected partner, MG, and most of all his faith – all these reasons and more are why I love this man. I thank God daily for choosing him for me. ❤
Gary had a bone density this month. He has been on a high dose of Prednisone since diagnosis. This drug while helping symptoms of MG has some negative side effects such as thinning of bones. Imagine our excitement when we received the news that he passed the test! He has perfectly strong bones! Isn’t this wonderful news? Of course he informed me that he studied hard for that test and wasn’t concerned at all about passing! 😉
Good news from the ENT, too! The new nasal spray is working wonders, and the biopsy on the corner of his mouth was clear! Woo hoo! Since Gary was feeling better, the doctor did not see a need to do a CT at this time. Double Woo Hoo!!
We also saw his neuromuscular doctor. There is a new study being done – CAR T-cell therapy. This therapy modifies a patient’s T cells to recognize and remove B cells that contribute to MG. She had sent us information to review, and we discussed Gary being a part of this study today. While it does show promise, it can have serious side effects. It is because of these side effects that we have decided to wait and possibly revisit it in the future. Due to Gary declining so much lately, we discussed starting plasmapheresis again. This is a procedure in which a machine is used to separate the plasma from the blood cells. After the plasma is separated from the blood cells, the blood cells are mixed with a liquid to replace the plasma and are returned to the body. Two ways of doing this were discussed: 1. through the veins of the arm,(he has had this done before) 2. a port in the neck (He has had this done before, too). The doctor does not want to use the port as the risk of infection is too high. Gary and I have discussed his options, and he has decided he wants to wait, and I understand. I have no doubt new treatments will be discovered and one will be perfect for Gary – we simply need to be patient and keep the faith!
Gary is in his wheelchair most of the time now. I have quickly become aware of how out of shape I am as he ZOOMS down aisles, around corners, and everywhere he goes. I’ve been tempted to borrow his oxygen tank! HA! He did push the “help me” button on his chair when we were at the Houston RV Show. He says it was an accident; however, I’m not so sure. (He does love that attention!) 😉
I have not taken as many pictures lately as we took a “vacation” from MG for a bit. Fear not – I’m back snapping pictures and attempting videos. Gary of course is back to showing off!
I am going to post a link here of our team page for the Houston Myasthenia Gravis Walk in April. Check it out and join us if you can. 🙂
https://supportmgfa.myasthenia.org/team/634649
Our rollercoaster ride with MG continues. Thank goodness we aren’t alone on this ride – we have wonderful friends, family, each other, and God. No doubt about it – as Gary always says…
I AM BLESSED
i am blessed 