Parkinson's--how little I knew before my diagnosis--(watch Michael J Fox 5/7 CBS)

[nursebboop1, BSN, RN]

This year I turned 6o. As a nurse of 28 years I learned last December that I knew very little about Parkinson's Disease but was about to learn more.

On 12/5/2008 I received the diagnosis of Parkinson's Disease after seeking a diagnosis for symptoms of Bil LE stiffness, pain, and weakness for a year. If I hadn't been unwilling to simply accept the diagnosis of Osteoarthritis from several MD's, including a Neurologist, I wouldn't be getting the correct treatment today.

All I remembered from school was tremors, pill-rolling, and Sinemet. The picture I had in my mind of a PD (Parkinson's Disease) patient was general debilitation and tremors that were painful to watch as well as giving the impression that dementia was also a given.

I urge you to take the time to learn more about Parkinson's Disease than your books and courses taught you. You maybe working alongside a nurse like me who has the disease but keeps it a secret due to the lack of understanding about the disease. I am afraid an assumption will be made that because I have Parkinson's my mind is not sharp enough to safely care for patients. It may be 2009 but this is a disease that the public, including medical professionals, know little about except the stereotype they have fixed in their mind.

We are people, that because of new medicines, have quality of life today. Our disease is not progressing as quickly as it did even 10 years ago. Yet we are guarded that you will find out. More and more people are being diagnosed at 30, 40, 50. 60. We are productive people fortunate enough to be diagnosed at a time when treatments are available and are continually being developed which gives us a prognosis much different than was given just 30-40 years ago. In the 70's the life expectancy after diagnosis was 10-15 years.

As nurses take the time to educate yourselves-- learn how important timing is in administering a drug like Sinemet. What does on and off times mean? What is freezing? What is Stalevo, Azilect? What challenges does urinary incontinence, potential for choking on food, fatigue present for the Parkinson's patient and what would be your plan of care? Very important to learn how good and bad stress exacerbate symptoms. What foods such as protein affect the effectiveness of meds.Learn more as advocates and also because this disease is still underdiagnosed. It behooves all of us to learn more so that we can treat these patients with more insight.

I urge all of you to visit the major Parkinson's web sites including Michael J Fox. Michael has done so much to put a spotlight on this disease. Check out vdeos of Michael on You Tube as he very simply explains the disease from his experience. Also please plan on watching Michael J. Fox, "Adventures of an Incurable Optomist" , Thurs, May 7, on CBS. Learn something for me.

Thank you :redbeathe

[linda1959]

Your post is very true. You "picture" of the Parkinson's patient for those of us who are a little older is also true.

Four years ago a very dear friend of mine was diagnosed at the age of 46. He had been having symptoms for over a year but not until the thumb twitch started did he find an MD who diagnosed him correctly. Today, he has not progressed much in physical symptoms due to medication and generally good care. Still working productively, raising young children and doing his best to lead a full life despite symptoms (for him fatigue and depression.)

Always a good thing for nurses to remember that the "picture" of a disease changes with time and research.

Best of luck to you!

[Vito Andolini]

I'm so glad you posted this. How very true it is that so many professionals, including doctors, miss the diagnosis. How scary, too.

Your optimistic outlook and your attitude of gratitude will carry you far in keeping the disease in check.

It is so true that we learn a lot when we are the patient. God bless you.