Life with Parkinson’s Disease (PD)

With it being a little over two years since I was diagnosed with PD, I’ve been reflecting on the experience of receiving the news and thinking about all the things that have helped me in managing the disease. What follows are just some thoughts and suggestions. Whether you were just diagnosed or know someone who was, maybe you’ll find some of this familiar — or maybe even helpful.

Yes, it is very scary when you hear these words for the first time: You have Parkinson’s disease.

A lot of thoughts go through your head:

–          Will this end my life as I know it?

–          How did I get this disease?

–          Is this disease is incurable?

–          How will this impact my job?

–          How will this impact my family?

–          How can I manage this disease?

Yes, it is a rude awakening, but it’s also an opportunity to step back, re-evaluate your life, and decide how you will respond and manage the disease. This, of course, is easier said than done. Whether you’ve just been diagnosed or you’re still trying to figure out what you have, there are few simple things you can do to begin being proactive about your diagnosis. Here are some things that worked for me:

1)      Find a good Neurologist if you don’t already have one — one you can trust, and feel comfortable with.  Get a second opinion if necessary.

2)      Go through all the possible tests to make sure you have PD.

3)      Make a list of all your present symptoms and take them to your Neurologist. I noticed my handwriting getting smaller, soft speech, stooped posture, and a blank facial expression at first, but others experience tremors in your fingers or hand, loss of smell, your arms don’t swing when you walk, trouble sleeping, may not blink your eyes as often, constipation, among others.  Some of these symptoms can be blamed on normal aging.  If you experience any of these symptoms, it is best to talk to your doctor ASAP.

4)      If you are diagnosed, your disease will be categorized according to a five point scale:  Note: This stage description was obtained from the Parkinson’s News Today Publication.

  • Stage 1; Mild symptoms such as tremors along one side of the body may be presented at this stage. Often the symptoms are mild enough not to interfere with daily life, but slight changes in walking, posture, or facial expressions may be noticed by those around them.
  • Stage 2; Both sides of the body may be affected by slightly worsened tremors or rigidity. Issues with posture and walking may become quite noticeable and everyday activities may be harder to achieve but patients will still be able to do things for themselves.
  • Stage 3; As motor symptoms become worse, patients may begin to experience loss of balance leading to falls and movement can become very slow. Although many patients can still live independently they may have difficulty in everyday activities such as eating or dressing.
  • Stage 4; In this later stage, symptoms are now extremely limiting. Many patients can still stand without assistance but movement is greatly impaired. Most will need help with everyday activities and will not be able to look after themselves.
  • Stage 5; This is the most advanced stage of the disease and most patients will experience difficulty in walking and standing, often requiring a wheelchair. Assistance will be needed in all areas of daily life as motor skills are seriously impaired. In addition, people with advanced Parkinson’s disease may also begin to suffer hallucinations.

 

5)      Take all prescribed medications. Work with your doctor to find the best balance of medications.

To get answers to some other questions listed above, go to references listed below, and talk to your doctor.

Those first six items are no small task, but managing the disease is extremely important.

6)      Start some type of the exercise program, if your doctor has not recommended something already. This has made all the difference for me.  My favorite is Rock Steady Boxing, and I strongly recommend you try it.  It will make you feel great.  Here is a list of some of my other exercise program recommendations;

7)      Whatever exercise program you select, make sure you do it on the regular basis.

8)      Remember, you have to fight PD every day, and you can stay ahead of it, but you can’t give up.

9)   Join a PD Support Group and you will find out that you are not alone.  If you don’t have one in your community, join one of the Online Support Groups, and there are many.  Here are some of the more popular ones:

10) Some Good References:

Download Free Parkinson’s Guide: https://www.griswoldhomecare.com/download-parkinsons-guide

Book; Understanding Parkinson’s Disease

APDA; https://www.apdaparkinson.org/

The MJFF: https://www.michaeljfox.org/

Parkinson’s News Today; https://parkinsonsnewstoday.com/

The Science of Parkinson’s Disease; https://scienceofparkinsons.com/

Medical Disclaimer: The content provided in this blog is for information purposes only. Any actions taken based on what is read in this blog are the sole responsibility of the reader. Under no circumstances should any of this information be considered medical advice. Before contemplating any actions by the reader should first be discussed with a qualified medical professional.

 

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