rbtro
Member
- Joined
- Aug 2, 2006
- Messages
- 27
- Reason
- PALS
- Country
- US
- State
- Maryland
- City
- Arnold
Hi All,
Attended my first MDA/ALS Clinic at Johns Hopkins. I had been diagnosed in July by the Neurologist at Hopkins. He hooked me up with the clinic. Yesterday I spent four hours in an exam room. I was visited by the chief clinician a Nurse Practioner who did an interview, FVC, and supplied me with much literature and info, as well as prescriptions for Rilutek, Miracil, and a BIPAP. My FVC was 32%. I was then visited by a Mobility expert, this is the gentleman who should have fixed me up with a powerchair. But as you know I already purchased one from EBAY thanks to this forum. I was hoping to get some assistance in making some adjustments to the chair to better serve me. But this was not to be he just wanted to sell me a back cushion and some lateral supports. Disappointment. I was next visited by a Physical Therapist, she asked what could she help with and talked about Stretching and ROM exercises. Gave me her card and said she was available if I had any questions. Then after a significant wait came the Occupation therapist. Appologized for having us wait and then asked how we were managing. We explained about the ramp and the stairlift to get upstairs and the work we are doing to complete our lower level to an ADA compliant living area. (36" doors, roll in shower and comfort height commode with elevated seat). We explained that we were using the manual chair to get me into the shower and then I was standing while the wife slipped the transfer bench behind me to sit on. This is becoming scarier as my legs continue to weaken. She suggested a 3 in 1 shower chair. I said I had been looking for one but they were expensive and my insurance is tapped out. She said there might be one in the lone closet but she doubted it, for they go fast. She gave me her card and also said call anytime she too was available if I had questions. I was then visited by the neurologist, he came in asked how I was doing small talked for a little, read my chart and then proceeded to check my reflexes, range of motion and strength. Said my arms were about the same but my legs were definitely weaker. Reviewed what the NP had written and told me that he too was available if I had any questions. I was informed that the gentlemen from MDA was not available because he was in Tucson for the telethon. but he would be in contact with me on his return. I was scheduled an appointment with a Pumunologist, given lunch and it was over. I went home. To Be Continued......
Attended my first MDA/ALS Clinic at Johns Hopkins. I had been diagnosed in July by the Neurologist at Hopkins. He hooked me up with the clinic. Yesterday I spent four hours in an exam room. I was visited by the chief clinician a Nurse Practioner who did an interview, FVC, and supplied me with much literature and info, as well as prescriptions for Rilutek, Miracil, and a BIPAP. My FVC was 32%. I was then visited by a Mobility expert, this is the gentleman who should have fixed me up with a powerchair. But as you know I already purchased one from EBAY thanks to this forum. I was hoping to get some assistance in making some adjustments to the chair to better serve me. But this was not to be he just wanted to sell me a back cushion and some lateral supports. Disappointment. I was next visited by a Physical Therapist, she asked what could she help with and talked about Stretching and ROM exercises. Gave me her card and said she was available if I had any questions. Then after a significant wait came the Occupation therapist. Appologized for having us wait and then asked how we were managing. We explained about the ramp and the stairlift to get upstairs and the work we are doing to complete our lower level to an ADA compliant living area. (36" doors, roll in shower and comfort height commode with elevated seat). We explained that we were using the manual chair to get me into the shower and then I was standing while the wife slipped the transfer bench behind me to sit on. This is becoming scarier as my legs continue to weaken. She suggested a 3 in 1 shower chair. I said I had been looking for one but they were expensive and my insurance is tapped out. She said there might be one in the lone closet but she doubted it, for they go fast. She gave me her card and also said call anytime she too was available if I had questions. I was then visited by the neurologist, he came in asked how I was doing small talked for a little, read my chart and then proceeded to check my reflexes, range of motion and strength. Said my arms were about the same but my legs were definitely weaker. Reviewed what the NP had written and told me that he too was available if I had any questions. I was informed that the gentlemen from MDA was not available because he was in Tucson for the telethon. but he would be in contact with me on his return. I was scheduled an appointment with a Pumunologist, given lunch and it was over. I went home. To Be Continued......