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Thoughts from the Women with Parkinson's Group

The Parkinson Foundation Women with Parkinson's Support Group put together some thoughts about living with Parkinson's disease. Click here to learn more about the group.

When I was diagnosed, I thought…

This couldn't possibly be true! How was I going to deal with this? What the ****? It was over… There must be some mistake. I'm too young to have Parkinson's and besides no one in my family has it. Well, it could be worse. I think I will take the meds, stay positive, and continue to live. This isn't going to kill me. I had done plenty of research, and knew that there would be challenges as the disease progresses, but I was optimistic that medication would help me continue to have an active life, and that I would continue to educate myself about the disease, because I believe that knowledge is empowering. It’s not the end. I take it day by day. I was relieved. My symptoms had started years before I was diagnosed. Finally, this thing that had changed my life had a name and I could begin to fight back.

My family's reaction to my diagnosis was....

Ok Mom, it is what it is; now let’s exercise and go on. Oh my, what are you going to do? One of support and compassion. Mixed... Some were indifferent since I didn't "seem" sick - others were very upset. Shock Are you serious? That can't be true! They were concerned and a bit shocked. Indifferent--I think because we tend to just handle things as they occur. Also I had an uncle who had it. They did not have an understanding of how troublesome it can become. To just deal with it and carry on my normal life. We were all sad, but not ones to wallow in our sadness. Positive yet surprised. Shock and sadness, but supportive.

Did you tell your co-workers, if so how did they react?

No, not right away. Some expressed compassion others were speechless. I had just retired, so I didn't have co-workers. But slowly when the time presented itself, I told all friends and family. Mixed reactions; some were visibly upset for me; most did not know what to say. A couple of them had figured it out. Others were completely stunned. I was a homeschool mom at that time, so my co-workers were fellow homeschool moms; and yes, I told them. Most were very compassionate and concerned. I told only a few close friends. After initial reaction they were curious, asked questions and continued with the bridge game. Other than that I have not directly mentioned the PD. If anyone asks, I own it! I did inform my co-workers. They asked a few questions and demonstrated support, although they had very little knowledge of the condition. I had retired right before my diagnosis. My former co-workers suspected there was something seriously wrong. They continue to support me with their friendship.

If people treat me differently because of my PD, it makes me feel...

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Qualifying for Disability Benefits with Parkinson’s Disease

If you have been diagnosed with Parkinson’s disease, you might be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers financial benefits for people of all ages who are unable to work due to a serious and long-term disability or injury. While Parkinson’s disease (PD) will not automatically qualify with a diagnosis alone, you may be eligible for assistance depending on the severity of your symptoms. Meeting the SSA’s Medical Eligibility CriteriaThe SSA has its own medical guide of qualifying criteria known as the Blue Book. To qualify for Social Security benefits, you usually need to meet a Blue Book listing corresponding with your diagnosis. In the Blue Book, there are two ways to qualify with PD:1. You have extreme difficulty moving two limbs (both arms, both legs, or one apiece), which prevents you from performing at least one of the following: • Standing from a seated position• Balance while standing or walking• Performing dexterous movements with your hands and/or arms, such as typing or carrying items2. You have limited mobility* which affects your physical ability to do work, plus at least one of the following:• Difficulty understanding, remembering, and applying information• Difficulty interacting with others• Difficulty concentrating or completing tasks• Difficulty “adapting and managing” yourself, which basically means behaving appropriately in an office setting*What is the difference between limited mobility and “extreme difficulty” with moving at least two limbs? “Limited mobility” means that your PD makes it harder to do daily living activities, but you’re still able to stand from a seated position or balance while walking. Three Months’ TreatmentBefore applying, it’s important to know that the SSA requires you to go through at least three months’ treatment prescribed by your doctor before you can qualify for Social Security disability benefits with PD. Treatment can include medication, physical therapy, or any combination of the two. This means that if you were just diagnosed with PD, you should wait at least three months before applying. People with recent diagnoses will unfortunately automatically be denied regardless of how severe their PD symptoms are.Age and Social Security Disability Another important factor to keep in mind is your age while applying. If you’ve worked throughout life and have recently been diagnosed with PD, you will only be eligible if you’re under your “full retirement age,” which is 65-66 for most people. If you’re receiving Social Security disability retirement benefits, you will not be eligible for disability benefits on top of your retirement benefits. If you’re eligible for early retirement benefits (age 62-65) and are wondering if you should apply for disability, always apply for disability first. Your Social Security disability benefits will equal what your maximum Social Security retirement benefit, had you continued to work until your full retirement age. At 65, your disability benefits will convert to retirement benefits (the payment will not change).Starting Your ApplicationMost applicants can file for Social Security disability online. If your PD prevents you from using a computer, a family member can always complete the application on your behalf. If you’d prefer to apply in person, there are over 1,300 local SSA offices located across the country. You schedule an appointment to apply in person by calling the SSA toll-free at 1-800-772-1213.This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org/ or by contacting them at help@ssd-help.org.
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Yoga for Every Body

Yoga for Every Body
Western culture oftentimes projects the myth that yoga is exclusively for young, flexible and athletic females. However, all people of all abilities deserve the opportunity to experience the positive impact of yoga and mindfulness. In recent years, research has provided compelling evidence that yoga, a very basic and ancient practice, can change pe...
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    Pittsburgh, PA 15202
  • Phone: 412-837-2542 - Office
The Parkinson Foundation Western Pennsylvania is the Pittsburgh region’s leading advocacy organization for Parkinson’s patients, their families and professional caregivers offering a variety of services related to Parkinson’s disease. Since 1995, the Parkinson’s community has relied on us for exercise, education and support programs as well as referrals to leading healthcare providers specializing in the treatment of Parkinson’s disease. The Parkinson Foundation Western Pennsylvania is fully funded through private donations.
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