update 1/28/14

Bernie starts PT today, twice a week for 4 weeks. This will help strengthen his right quad muscle that was torn in one of his falls. He needs the therapy both for the injury and to strengthen his legs for the anticipated wheelchair. As for the wheelchair we have completed the PT evaluation portion, and next is the face to face with the neurologist, that is set for Monday the 3rd of February. Once that is complete all the paper work will be submitted to the insurance and hopefully it will be approved and in a couple of months we will have the chair. As soon as the warmer weather gets here (we live in the northeast) we can start building the ramp so Bernie will have access to the great outdoors! Progression; Bernie’s eye issues are very noticeable now as are the progression periods he has been through. The Botox injections he received every 4 months are not having the same effect they use to. The neurologist says that when they no longer help then he will have to stop giving them. He is slowing down in all areas it seems, his appetite, his socializing, his weakness in arms, legs etc. Although he is still doing pretty good in my opinion I can see where he is weakening, surprising though he can eat foods and does not require pureed food yet. I do have to cut his food into bit size portions for him and have to constantly monitor him because he over stuffs his mouth to the point where he can’t close it! This is a constant struggle and I think why some people go to pureed foods sooner and it is something I am considering to help alleviate the over stuffing. This illness takes everyday management and is why it is best to have someone with them at all times. Bernie still has some periods during the week where he is alone but not often. I am signing off for now and will update again soon.

wheelchair

After an evaluation they recommended that Bernie get a power wheelchair not a scooter. The reason for the power chair is so I can use the controls when he can’t and I won’t have to push him up ramps. I am happy with this decision and am being told that the process could take up to 3 months before we receive the chair. Bernie is not 100% happy to be getting the chair as it is another step in losing part of himself but it is for the best. It will keep him from falling so much and injuring himself. The last bad fall he tore his quad muscle. I see a big decline in his overall appearance, I was showering him last night and really looked at his legs and he is losing muscle mass. He use to have the strong legs of a runner and now they look frail bruised and weak. He is picking at his skin all the time, he says it itched, yesterday it looked like he was attacked by a cat on his chest! His doctor says that psoriasis is a condition associated with Parkinsonism. He has sores on his head and face from picking them and now it is affecting his limbs, how much more can he take to go wrong with his body….my heart aches for him.