Help Spread Awarness Of Early Onset Parkinson's Disease

I would like to share with you how my life was before Parkinson's, in hope that you can help me raise awareness about this disease, particularly during Parkinson’s Awareness Month, which is April.

There is Approximately 10,000 out of 1.5 Million Diagnosed each year with Early Onset Parkinson's Disease.

Although some of my doctors suspect a bout with Lyme’s Disease triggered my Early Onset Parkinson’s Disease at this time, the research indicates that it was in my genes, and would have presented itself eventually.

Since I was diagnosed with Parkinson's Disease in Oct. 2000 at the age of 36, my life has not been the same. Prior to my diagnosis, I was working full-time at a home improvement store, only three weeks away from becoming a supervisor. I got sick the week before Easter of 2000, with what I thought was a bad case of the flu. When I was rushed to the hospital with a fever of 105, they did a spinal tap, suspecting meningitis. Instead, they discovered I had one of the worst cases of Lyme Disease the doctor had ever seen (Earlicia Lyme Disease) and I was put on strong antibiotics for 30 days. After the antiobotics were done, I was re-tested, and pronounced clear of the Lyme Disease.

Five months later, my hands were shaking to the point that I could not hold onto things. I thought it was a side effect of the medicine I had finished months earlier, but a phone call to the doctor quickly disproved my theory. I ended up with a referral to a neurologist instead. The neurologist ran a comprehensive battery of tests, each one coming back fine until the last test. That last test was a PET scan, which revealed the lack of dopamine growing back in my brain—the red flag for Parkinson’s Disease. In my case, because of my age, the doctor used the other tests to rule out everything else before diagnosing me with Early Onset Parkinson’s Disease. From that point on, life as I knew it changed drastically.

Through the time period I was being treated for Lyme Disease, my boss worked with me. However, after my diagnosis with Parkinson's Disease, I had to disclose the medication I was taking, and the reason for taking it. A week later, I was called in and told that the company was doing cutbacks, and I was no longer needed. Although I was still able to carry out my job competently, perhaps I was a risk they didn’t want to take. Either way, people hired six months before kept their jobs, and my four years experience didn’t seem to matter.

At that point, I had to go off of my medication, since I no longer had a salary. I also could not get another job, due to the pre-existing condition now noted on the insurance connected to the job I no longer had. Without medication for over a year, my condition worsened drastically.

Eventually, I had to move from New York to Florida, back in with my parents. I applied for disability so I could go back on the medication, expecting it to take a few months. Instead, it took two years of fighting, reapplying, and arguing with the so-called experts who insisted that I couldn’t possibly have Parkinson’s at age 36. Without the backing of a doctor, due to my lack of insurance, the process became overwhelmingly complicated. I was finally approved two years later.

Then, I went to see a Movement Disorder Specialist in Tampa, FL, who confirmed my diagnosis, and started me on a new round of medication. The medicine helped some, but I had gone too long without medication, and had lost significant ground. Each day since then has been a struggle to regain muscle strength, balance, energy, and some relief from the pain.

Strangely enough, some of the most unpleasant parts of this disease have been non-medical. When I go into a store, or out to dinner with friends, and others notice my hands shaking, the comments are not compassionate or concerned. I am treated as if I were a junkie in need of a fix. In fact, since people aren’t aware that young people can even have Parkinson’s Disease, they assume the worst. Walking through a store, people stare at me, and comment loudly that I must “need a drink” or “a fix” as if I am just willingly walking around impaired.

Specifically, for the past 5 years I have had lower back pain, neck pain and severe headaches. My Doctor increased my med's but that did not help. I was going to physical therapy for 5 years 2 times a week but that did not help the pain and my walking was getting worse. I also wasn't able to stand up straight. When I had my 6 month check-up in January 2008 with my Neurologist, we talked about getting a handicap sticker and possibly in 6 months to a year needing a walker. I left there thinking about what we talked about and decided I was not going to let Parkinson's Disease take over me. I went on a mission to find other alternatives and luckily I stumbled on something truly amazing that has been extremely helpful..

I found some research on core strengthening and the importance of core stabilizing drills. This led me to a brand new feedback technology which enhances many core strengthening exercise programs. I learned that this Core training product is being used by many professionals and that it is also being used with some of our returning veterans who have been injured in Iraq and Afghanistan to regain core strength as they learn to stand in their new prosthetic. This new technology has helped me regain my abdominal muscle control, increased my core stability, and I believe has even significantly increased my energy level. This new core exercise tool is called the “Ab-Inforcer Core Biofeedback Trainer”. It was developed, tested and manufactured by a woman owned company in Los Angeles. The inventor, Lee Brandon is a Certified Strength and Conditioning Specialist who believes with all her heart that the secret to better functional movement is core strength, core stability and better postural awareness. She developed her exercise machine to help people train in better form by using the feedback the device provides. It uses sound, lights and vibration to help you feel if you are in the proper position or not. It’s sort of like having your own abdominal and core strength coach. The exercises that she instructed me on how to perform on the AB-Inforcer focus on three areas that seem to be very helpful to Parkinson's patients. First it focused me on using proper breathing muscles separated from a stronger and more stable core and low back, Secondly it taught me the importance of my head and neck position in relation to the rest of my body and spine and thirdly the exercises and the feedback provided by the machine provided me better postural awareness and postural muscles strengthening. I did not change my meds or add anything new into my regimen. I started working out with the Ab-Inforcer in May, 2008. 7 weeks later my back pain was gone and so were my headaches, 3 months later my legs are stronger and my posture is getting better. If you don't have good posture and you are leaning forward or your head is in the wrong position, then you won't have good balance and that is very important to have with Parkinson's Disease. I will not need that walker anymore. I know this technology is not a cure and that it might not help everyone, but it has given me a better quality of life back and I hope we can help others with PD to have the same chance.

They say that exercise is very important with a PD patient. I was doing certain exercises in physical therapy for years and it didn’t seem to help me much. I believe that the Ab-Inforcer’s lights and sound and vibration feedback has allowed me to train smarter and harder in much better form and I am convinced that this better form is part of the reason why I am doing so much better today. I feel that someone needs to tell other PD patients that this technology exists, that it works and that there are answers out there in addition to taking the meds.

I hope that sharing my story with you has helped you to understand why it is vital that everyone becomes aware of Early Onset Parkinson’s Disease. Please join me in promoting awareness and tolerance and letting people know that they can still have hope, especially as we near the month of April.

Ab-Inforcer Information Shared by Lee Brandon, C.S.C.S.

How the AB-Inforcer can help those with PD:

But now some individuals with PD are finding a way to move more easily that doesn't involve taking more drugs. Instead, they're doing AB-Inforcer® Core Biofeedback Trainer exercises.Developed by Lee Brandon, CSCS, these exercises focus on three areas that seem to be very helpful to Parkinson's patients - breathing and strengthening the "core muscles," addressing the spine as a system and providing postural awareness and postural strengthening. Breath "training" helps because many people with PD tend to breathe shallowly, which limits the amount of oxygen they can take in. Core exercises assist with postural awareness, which Parkinson's patients find difficult to maintain. Addressing the spine as a system while training the entire core is critical for postural improvements (We call this Spinal Triangulation™ ).AB-Inforcer® Core Biofeedback Trainer exercises use very controlled movements, and are based on the theory that it's more important to reinforce good motor patterns and avoid repetitive micro trauma and move correctly in good form with every exercise. Beginning progressions are gentle and simple; many are done lying down. The three sensors and biofeedback in the form of light, sound and vibration assist in promoting better form in each exercise, remove excessive momentum and distortion, and helps isolate out the use of the hip flexors which is a root of many postural distortions. This makes these core exercises ideal for rehabilitation, and in fact they're sometimes recommended for other conditions under a professionals care, like post spine surgery rehab, Parkinson’s disease, multiple sclerosis, fibromyalgia, and scoliosis.One of the biggest advantages of training on the AB-Inforcer®, though, is the flexibility of its routines. Exercises can be personalized to meet the individual needs of the people doing them clinically and at home for maintenance. Core exercises have been recommended for Parkinson's before. Those who use the AB-Inforcer’s new biofeedback training technology for their Core training have found it helped them become stronger, more flexible, and more balanced in a shorter amount of time.