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PML - What's the next step?
Aug 16, 2000

Dr. Feinberg,

My brother was diagnosed with PML in Nov, 1999. At that time his tcell count was 10. As of July his tcell count is 174 and the viral load has been undetectable since January.

I brought him home in February to live with me and at that time I was told he only had 1 to 6 months. Since then, he has made some improvement. He can feed himself finger foods, some of his speech has come back and he can take a few steps using his walker. My question is, will he improve further? The doctors here have not dealt with this complication much and said he has reached his potential for improvement. What should my next step be? Do I push him to do more or just let things happen as they happen? I have been thinking of hiring a physical therapist to come in and work with him. I would appreciate any help on what I should and should not be doing. I am at a loss.

Response from Dr. Feinberg

It sounds like you are doing a great job of supporting your brother. It is certainly possible that he may recover more function. The key thing is for him to continue to improve his T cell count and keep his viral load suppressed -- that's why he has gotten this much better already. I think getting physical therapy, speech therapy and occupational therapy (these are the people who give you special tools, like eating utensils that are easier to hold on to, etc) evaluations, you would be doing your brother a potentially huge favor. These different kinds of therapists can work with you to outline a plan to improve your brother's strength and coordination, both by working directly with him and by giving you (and other family members, if they're available) activities and exercises you can work on when they're not there. Good luck, and please let me know how things turn out!


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