40 days…

It will have been 40 days since Gary’s last infusion when he receives his next round. While we had hoped for longer, this is still cause for celebration as past infusions gave him only 7 to 14 days.

He still is not having to use his walker/wheelchair; however, we do believe he will by the time June 6th gets here. No problem…we will simply add streamers to the wheelchair and say we are celebrating Father’s Day early! 🙂 His cane remains in the car to give him stability out and about. And of course, his favorite….the golf cart!

You can see his “battery” running down each day; although, I suspect he has a backup somewhere as his humor, smile, and faith keep shining through.

His MG-ADL score jumped from an 11 to a 17 in one week. 17 is higher than when he began this process. No worries…that score will be 0 before you know it! 🙂

The will get better items: speech – his Elmer Fudd voice is making appearances more often, his chewing has become difficult and he tends to bite his tongue often and choke, walking is taking more effort as is most basic activities such as showering and dressing, he is sounding like a fish out of water trying to breathe after simple tasks, brain fog, and his eyelid droop and vision issues continue to harass him.

The positive: He is not at walker/wheelchair mode yet. This tells us the Vyvgart is still working, and he remains healthy (no current infections), happy and as always positive. He has not let this hold him back and continues to live each day to the fullest going places, working, and enjoying family and friends.

We did decide to lower his Mestinon dosage from 360 to 240 as the cramping was keeping him up at night despite the extra potassium. Since lowering he is back to sleeping through the night! Doesn’t take much to make him happy! HA! He is looking forward to the day he is allowed to lower his prednisone dose and finally no longer have to take it. (Positive thinking) His arms remain bruised, skin is thin and breaks easily, and of course the dreaded weight gain not to mention possible bone issues. He uses Eucerin Advanced Repair Lotion on his arms which really seems to help. He also continues to take Vitamin D with K2 to help with the bones. And of course….he continues to believe with his whole heart that

He….Is….Blessed