Greg had a follow up appointment with his Leukodystrophy team at Kennedy Krieger which resulted in some positive feedback! It appears that Greg has minimal progression of his MLD symptoms! They felt that he was physically stronger than a year ago and had the same range of motion (he has tight Achilles tendons and all the muscles in his legs). Physical therapy is working! We were also happy to hear that his bracelet making endeavor (Occupational therapy) has all but eliminated his hand tremors! Apparently he has formed new pathways in his brain and retrained his “muscle memory” so the repetition of stringing beads has strengthened the new pathway! Of some concern was the diminished sensation on his left foot. However, they repeated the nerve conduction study and it appears that he has no Peripheral Nerve involvement. So far the MLD has remained in the Central Nervous System. Good news for the potential of future clinical trials.
We give big thanks and credit to his fabulous Physical Therapist, MJ, at Central MD Rehab! He continues to go twice a week for stretching and land exercises, followed by aqua therapy (his favorite place to socialize). Greg has become quite the ambassador for CMRPS: he knows all of the therapists and techs and business staff and even most of the patients. They have treated him with such love and care; it has become a second family for him.
Greg has also had a couple of job interviews. This last one was fruitful in obtaining volunteer work at a local senior center, helping out with activities and wherever else he may be needed. He is excited to meet and interact with the elderly and has high hopes to educate them all on MLD!
Greg continues to make bracelets and tell everyone about MLD. He even “shocked” the girl who cut his hair by telling her he had “a rare disease in his brain and wasn’t expected to live long”. We think the haircut suffered a bit due to her surprise and emotion. That’s probably the hardest thing about MLD, Greg’s thought processes are so scattered and lack a filter. He blurts out anything he is thinking and jumps from topic to topic which makes it difficult if not comical to follow. He realizes it is happening but seems unable to control it. The regression in maturity is probably the hardest thing to witness given the fact that his early years showed such promise and potential. People used to say that talking with Greg was like “talking to a little man”. He was beyond his years early on.
Fortunately, Greg continues with a strong Faith and an attitude of invincibility. He may aggravate us (especially at the dinner table) but he certainly keeps us entertained. He is such a lovable kid and tries so hard to be helpful. He really enjoys meeting new people and going places and wants to spread awareness for MLD.
We may not be sure where this path is leading us or where in the journey we are but we will Never Never Give Up! Thank you for your love and support, together we will persevere!