I know I’ve gone through a lot of stages since my diagnosis. So many that I have come up with my own rating scale. I call it the Reinhart New Rating Scale for Parkinson’s Disease. I’m sure others will find it extremely valuable.
Here it is:
Driving allows personal freedom, control and independence. Many people with Parkinson’s disease (PD) continue to drive safely long after their diagnosis.
While Parkinson’s progression and medication side effects may affect a person’s driving ability, the diagnosis alone does not tell the whole story. Much depends on a person’s specific symptoms, as well as the presence of other age-related changes.
Though Parkinson’s may present driving challenges, there are many ways to maintain independence. If you are facing driving challenges, consider the following tips to help you take control of your transportation needs.
Sunnyview’s Driver Training Center offers the most comprehensive program of driver assessment, training, retraining, consulting about adaptive driving devices, and on-the-road evaluation for the disabled and elderly. In fact, Sunnyview is the only area hospital with such a program available to the public.
Our trained driver rehabilitation specialists discuss all findings and recommendations with clients and family members, as well as assisting with license renewal information as needed.
The goal is safety, and getting back on the road.
For more information, or to schedule an appointment, call 518-382-4569.
Sunnyview patient resource about driving evaluation
More information from national PD organizations
No one ever plans to have a catastrophic illness.
Most people go through life assuming that conditions such as organ failure, HIV/AIDS, cancer or hypertension will happen to someone else – not to them or their loved ones. But if a chronic disease does strike, individuals are confronted with a wide range of issues, one of which is finances.
If you are seriously ill and concerned that you have insufficient funds to maintain your quality of life, consider the information presented here before you do anything drastic such as selling your home or your life insurance policy. Also, retain the counsel of a professional comprehensive advisor. This individual should be someone who is not working on commission and with whom you have no conflict of interest. The advisor should examine your situation to suggest the wisest course of action.
Understand Your Financial Situation
The most important thing you can do is to get a clear picture of your financial situation – from assets to liabilities to borrowing sources. Once you thoroughly understand your financial situation, review these tips.
The first thing to know is that most businesses that offer discounts to people with disabilities or their escorts don’t publicize them, so it’s important to always ask.
Also note that most nonprofit organizations and government agencies that provide disabled services or benefits will require proof of disability through a letter from your doctor or some other form of verification before they will accommodate you.
Beneficiary and Family Centered Care Quality Improvement Organizations (BFCC-QIO) help Medicare beneficiaries exercise their right to high-quality healthcare. They manage all beneficiary complaints and quality of care reviews to ensure consistency in the review process while taking into consideration local factors important to beneficiaries and their families. They also handle cases in which beneficiaries want to appeal a health care provider’s decision to discharge them from the hospital or discontinue other types of services. Beneficiary experiences, both good and bad, give the QIO Program the perspective to identify opportunities for improvement, develop solutions that address the real needs of patients, and inspire action by health professionals.
BFCC-QIOs, like Livanta, review appeals and complaints about health care for Medicare patients. Quality Innovation Network (QIN) QIOs work with providers to improve care.
While BFCC-QIOs are the primary point of contact for Medicare beneficiaries and their families, quality of care complaints can also be made by calling 1-800-MEDICARE.
Livanta BFCC-QIO HelpLine 866-815-5440
Please have the followinf information available when calling:
Medicare card and number
Date of birth
Address and phone number
Date of service
Provider contact information
In Parkinson’s Disease, early diagnosis does matter—for some obvious reasons, and also for reasons that are rarely discussed. (recent edit 2/20/2018)
Carolyn Allen Zeiger, Ph.D.
Retired Licensed Psychologist and spouse of someone with Parkinson’s Disease
The question I always hear people with Parkinson’s (PWPs)—and their spouses—ask about someone else with PD is not, “How long have you had PD?” but “When were you diagnosed?” Given that there is no definitive medical test to confirm the diagnosis, the delay between symptom onset and diagnosis is generally a few years. The thinking used to be that an early diagnosis didn’t matter. After all, at this time it can’t be cured, it’s going to progress, and perhaps it is best to delay the use of dopamine replacement medications since they only provide symptom relief. In addition, even some physicians still harbor the mistaken belief that these medications tend to lose their effectiveness over time. Generally unstated, is also the thought that early in the progression of the disease it doesn’t have a big negative impact on the patient, or his life in general. He’s doing well enough to get by. But is he or she? And what about the spouse or partner?
Fortunately, more doctors are focusing on early diagnosis. But not for a reason that I find compelling: the impact of PD on our most intimate relationships—spouse, partner, lover. So many times I have heard, and experienced myself, the painful impact of undiagnosed PD on our closest relationships. Sometimes the impact is so great as to mean the ending of even long-term marriages when unidentified symptoms become burdensome or sources of ongoing conflict.
Establishing your estate plan can be likened to committing to healthy eating. You know that it will benefit your health and quality of life as soon as you commit to it, but revving up to that first day and turning it into a lifestyle can feel like an impossible job.
Read more here
Social Security Disability Insurance (SSDI)
If you live with Parkinson’s disease, are below 65 years of age and are unable to work due to your Parkinson’s disease and/or other condition, you might be entitled to SSDI benefits. These are income supplements for people whose employment is limited due to a disability. Read more about SSDI or call 1-800-772-1213 to learn more.
Parkinson’s disease and the Blue Book
Whenever the SSA receives an application for disability benefits, they will compare your medical records and test results to their own guide known as the Blue Book. The Blue Book lists hundreds of conditions that are potentially disabling, as well as the test results or symptoms you’ll need to be approved for benefits.
Parkinson’s disease is listed under Section 11.06 of the SSA’s Blue Book —Parkinsonian syndrome. To qualify under this listing, you will need to show that you experience at least one of the following symptoms in two extremities:
- Slowness of movement
These symptoms need to be severe enough to affect one of the following:
- Your ability to perform dexterous movements, such as typing on a computer
- Your ability to walk
- Your ability to stand upright
You can apply online at ssa.gov
If you are denied, get an attorney to help you appeal, You will pay only if you win.
Social Security Administration booklet