PatientsLikeMe ™

I am a 54-year-old wife, mother, and grandma who was diagnosed with PD at age 45. This disease has been devastating. I have had some very rough times. At diagnosis, I was in and out of the hospital because my stomach could not tolerate the PD meds. I was vomiting constantly and lost 35 pounds in one year. My neuro was waiting for Stalevo to become available. I got the drug immediately, & I finally started feeling better. Then we waited for Azilect to become available, and I started that drug immediately also. At the same time that I was diagnosed with PD, I was also diagnosed with Dystonia which is extremely painful, & I had severe pain all over my body from PD. In 2009, I fell and fractured my pelvis, I fell again and severely sprained my ankle and knee, so I have to use a wheeled walker in order to walk. I was diagnosed with bursitis & osteoporosis in my right hip which was so painful that I have to get cortisone shots at least once a month. I was also diagnosed with a B12 deficiency, an under active thyroid, and arthritis. I began having severe back pain to the point that I had trouble breathing for 3 hrs. when I got up in the morning. I had MRI’s done on my entire back. They found 3 cysts that are intertwined in my spine, several bulging and deteriorated discs, and half of my tailbone was missing. I saw 2 back neurosurgeons who both said surgery was not an option because it was too dangerous. I was put in a metal back brace, which helped a bit, but then my husband & I invested in a Sleep Number bed. I have not slept in a bed for over a year, and since we got the bed, I have had little or no back pain. In April 2010, I was told my PD was moving to my left side. I could feel myself becoming weaker and weaker to the point that I couldn’t stand up on my own. I told my neuro that I was desperate for help, so he suggested a physical therapy plan called “LSVT BIG & LOUD”. It is specifically designed for PD patients and has been perfected for over 20 years. I got into the program on June 7, 2010. I was told it was VERY intense and VERY painful. It is a 4-week program--4 days a week--2 hours each visit. They push you to the max. But my physical therapist told me that at the end of this program, he WOULD have me walking WITHOUT my walker, he WOULD have me walking balanced and properly, he WOULD have me writing again, which I wasn’t able to do, & he WOULD have me going up & down stairs. When you exercise, you take BIG STEPS; when you count out your numbers, you count LOUD, that way, you are exercising your voice at the same time. EVERY exercise in this program is built around movements that you need to do on a daily basis like everyone else to do daily tasks that everyone else does--concentrating on doing them SAFELY, PROPERLY & BALANCED. There are wrist exercises, writing exercises, mouth exercises, and voice exercises that you must do. Believe it or not, he took this stiff, barely moving, homebound body, & I was doing EVERYTHING he told me I would be doing! But, I MUST keep doing these exercises on my own every morning and every evening or I will regress quickly. Believe me when I tell you that this program had given me a life back. I felt like a caged bird that had been set free! This program is truly AMAZING, and every PD patient should go through it.