PLEASE READ MY BIO BELOW!!!! I couldn't explain my life in this short bio!!
I am a 55-year-old wife, mother, and grandma who was diagnosed with PD and Dystonia 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 also. The Dystonia caused severe pain all over my body. 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 now. I was diagnosed with bursitis & osteoporosis in my right hip which is so painful that I have to get cortisone shots 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 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 is missing. I saw 2 back neurosurgeons who both said surgery 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. Since we got the bed, I have had little back pain. In April 2010, I was told my PD was moving to my left side. I could feel myself becoming 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 program called “LSVT BIG & LOUD.” It was specifically designed for PD patients over a 20 year period. I got into the program on 6/7/10. 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. EVERY exercise in this program is built around movements that you need to do on a daily basis 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. 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 every morning and evening or I will regress. Believe me when I tell you that this program has given me a life back. I felt like a caged bird that had been set free! This program is truly AMAZING!!!
UPDATE 11/2010--Didn't know that when you work out so hard, YOU CAN TEAR THE MENISCUS IN YOUR KNEES!!!!! Found that out when I TORE THE MENISCUS in both my knees in October 2010! I had to have arthroscopic knee surgery on both knees on 11/3/10. Unfortunately, I had to stop doing quite a few of my LSVT exercises which made me want to cry. It was such hard work.
ANOTHER MAJOR SETBACK in 9/2011!!!!--- I had surgery on my right hand (and I am right handed) for “trigger finger.” It was supposed to be a simple 15 minute procedure that would remove the cyst causing my fingers to curl up, and my hand would be back to normal. Well, the surgery did not go well. My doctor was inexperienced with doing surgery on neurological patients. I am now seeing a well-known hand specialist who said that because I did not have any physical therapy after my surgery, my fingers, which are closed up again, swollen, in pain, and deformed, will unfortunately be that way permanently which has devastated me. I have to wear a metal splint at night and as much as I can during the day which makes my hand and fingers straighten out. But as soon as I take it off, my fingers curl up again and I only have the use of my index finger and thumb. This put me into a very deep depression.
UPDATE 9/2012!!!!!!--I am just now accepting and adjusting to the way my right hand is. It has been a year since that devastating surgery. I have limited strength and function. It has been a very painful, hard adjustment. With my right and in the metal splint most of the day, I feel like I lost my right hand.
BIG, BIG SETBACK 9/2012!!!!!--Now my Parkinson’s is in progression. I’m having “wearing off” times a lot which is bringing on a lot more stiffness and weakness. My doctor said that there is a new drug coming out in January 2013 called RYTARY-an extended release carbidopa/levodopa (which he was involved with the study). That will replace my Stalevo, which I have been on for almost 8 years. He really feels Rytary will help me get back on track. So, I am waiting, hoping this new drug will help because I don’t have a lot of good days right now, which scares the **** out of me.
Tore meniscus in my right knee for the second time and had to have arthroscopic surgery to repair it. For someone who is SO INACTIVE, I don't understand how it happened again!!
Well, unbelievable news. I TORE THE MENISCUS IN MY RIGHT KNEE FOR THE THIRD TIME!!! HAD SURGERY AGAIN!!!
Aug 21, 2009
Nov 16, 2013