I cant really say that Bruce is doing better. I cant tell. Since we came back from the National Institute of Health and saw Dr. Colbert, his upper back between the shoulder blades started to hurt along with his lower back and knees. The trapezoids into his neck were really tight. Anthony, Bruce's physical therapist just didnt understand why his back wouldn't let up? He kept asking... why? Nothing helps,stretching, massage, Flexeril, NSAID, Tramadol, Neurontin, Heat, Cold, spa,...nothing helps. The massage and heat helps for the time its happening but then it just comes back. I wish I could wave a magic wand and wave it all away. I wish it were that easy. Sadly its not. We try to stay optimistic. We really do. Most days hes good and just deals with all this crap. I am happy to say that Bruce did not have to use his wheelchair this past fall and winter. We only used his wheelchair when we went to Washington, D.C.. Bruce's legs get very tired and the wheelchair is a good thing to have. We take it on every trip just in case.His legs seem a bit better. So no wheelchair and he still had the use of his legs... He still gets tired and stiff but its different. Hes traded one thing for another. Hes walking more but now he cant twist. The one thing he loves the most is Golf. Yes hes my kid and I can say that hes really good...but he is really good. His golf coach Wally was a pro PGA golfer. We got lucky to have him as Bruce's coach. Hes not only good at giving direction but Wally was good mentally for Bruce. We noticed that Bruce was not wanting to go to the range and he stopped going to the putting green across the street from our house. He told us awhile back that he could not twist as far back as he used to be able to, so his swing would be off. He tried it this past week, thinking he could go out there and chip, so he didn't have to make such a big swing and follow thru. About a half hour later he came back in with his dad and was extremely upset. Its the one thing that he could do as a sport. Dad bought a tandem bike so when Bruce was tired he could just stop and let his dad do the work. Dad is also looking into buying a 2 man Kayak. Bruce loves this. It gets him out in the "wild" and that's one place where he can enjoy himself. Hes pretty good at swimming but its become a need for his body and not for enjoyment. He likes to swim because he feels so good in the water but its become a chore. We go swimming everyday, even in the cold. Our pool is heated. Were just trying to find an outlet for this young man. I just wished that golf wasn't taken away and I hope its not forever. Bruce has been walking everyday and using some light weights. Its been cooler with no humidity. Today he had a hard time...Summers almost here. So now he can walk 2 miles but he cant twist. So different from what was going on in the early days. Can I say that hes doing better....Um,I think so but he still cant run, has fatigue, cant twist and still has enthesitis. He still swells but not much. Is this better?
We haven't had any changes in his medication except for the Amitriptyline that was given to him to reduce the pain in his gut. So far that has not worked. Dr's also said it could help with fibromyalgia if he has it. But it hasnt done a thing. Oh and a probiotic for his gut too but nothing for his arthritis. We see Dr. Colbert at NIH on April 23rd and we will see whats going on. I will update when we get back.