Karen Lynagh
Forum Replies Created
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I can’t speak for someone who has MG, and as a caretaker only. What I can tell you is that every moment with you is precious to them – and they wish that you knew that, truly. They have put themselves in your place as best as they know how, and the treatment that they give you is what they believe that you would be doing for them had it been them instead of you.
Let them love you, as that is what they really desire. They just want more moments with you – more opportunities to cry again, to laugh again, to smile again, to grump again…..to be you again. They don’t see you as the disease. They see you with a disease. Mostly, they see you.
The best thing you can do is share with them. Let them share their life with you, as you. They ask nothing more. Just allow.
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I speak for my husband. He presented with vision issues as his onset at age 64. Being under VA benefits, it took some months to get proper diagnosis and begin treatment. After his CT scan, it was found that he had a tumor on his thymus. At the time of the surgery eight days later, the tumor was not ‘on’ his thymus, it had encapsulated it and grown ‘tentacles’ that had reached his pericardium, begun to wrap around his left phrenic nerve, and spread throughout his upper chest cavity. A surgery that was to take about 2 hrs took nearly 5 1/2, so I knew something was very wrong. The tumor was benign, though aggressive. He did much better initially after the surgery. He is NOT typical mg. Unfortunately, even though his thymus was removed, his body seemed to be able to produce the troublesome antibodies from somewhere else in his body. As I said, NOT typical. Thus, it may help, but I don’t know the long-term effectiveness of the surgery? In any case, the surgery prolonged my husband’s life, and for him, it was truly life-saving. I don’t know if this helps, but you may want to see if you can find a study that discusses the long-term solution as opposed to possible short-term?
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My husband became very easily agitated when taking pirydostamine/mestinon. There were times I felt I could do nothing right. It ended up making his symptoms uncontrollable. HOWEVER, he was a rare myasthenia sufferer, so do not take this input as advice. The medical staff listed it as a drug that he was allergic to – a cautionary statement is all I wanted to add.