PERSEVERANCE

Tim Hague Sr. was diagnosed with PD at age 46, and now he is a motivational speaker on the topic of this disease. This year, he published Perseverance, a memoir and self-help book based on his experience with PD

Three years after he was diagnosed with PD he entered and won The Amazing Race Canada, with his son Tim Jr., and became an instant celebrity.  He compares the challenges he faced in this Amazing Race to the experiences all of us face on a daily basis in fighting Parkinsons disease.  Here is how he defines Perseverance:To carry on in your course of action, even in the face of difficulty, with little or no evidence of success.”  In this race he describes situations where they faced difficulties with no hope of winning, but they persevered and stayed on course, and ultimately won The Amazing Race Canada.  Tim breaks down Perseverance into seven skills that you need to survive, thrive, and accomplish more than you ever imagined:”

1)      Accept Limits – “Parkinson’s has brought a certain closure to my past life – But I can experience new growth and new beauty.  By accepting limits and by practicing contentment, I can look forward to all that will be as I learn to grow in this new life I have been given.”

2)      Cease Striving – “Parkinson’s is profoundly adept at pointing out my limits, and I dare say that this can be a good thing: I can assess what I can and can’t do and concentrate on the former.”

3)      Take Every Advantage – “…take advantage of the good fortune that comes our way. It seems obvious, but we don’t always do this. Take the gift and be grateful.”

4)      Let Go of the Happiness Myth- “…don’t believe the lie that our lives should be free of pain and hardship.  Life just doesn’t happen that way.  Think of many grueling, difficult tasks that we have to work hard through and ultimately lead to joy.  Suffering, if we allow it, can draw us deeply into an ability to persevere.  Hardship can teach us how to stay in the race even when all seems lost.”

5)      Understand the Nature of Luck- “…it’s those that stay in the race who so often seem to get lucky.  I can guarantee you this: give up and you will never see luck. When we get up and do our best, luck often follows.”

6)      Pay Attention – “…when we learn to pay attention to the details in life, we often come away amazed at how things fall into place.  Understand your clues.”

7)      Find Community – “We need the friendship of individuals who get what we’re going through.  Who can not only sympathize with our difficulties but also call us out when we’re slipping into unhealthy places.”

Chapter twelve of this book provides detailed examples of each of these skills.

 Here are some of the lessons I took away from the book:

a)      “Parkinson’s disease is not a death sentence, but it is a life sentence, but do not let PD dictate your life.”

b)      “The Parkinson’s will become your best friend that you hate.”

c)       When you have Parkinson’s the exercise is not just an optional activity, it is a mandatory activity.

d)      To get the best benefits from your exercise, you need to push yourself to a 110%, even when you do not feel your best.

e)      Many studies have shown that the vigorous exercise is the best medicine to fight and manage Parkinson’s and it could also delay the progression of Parkinson’s.

f)       Set up a definite schedule for your exercises as part of your daily activities.  I have scheduled my exercise activities first thing in the morning, before any other daily activities.  This way I make sure I do them.  I walk every morning, and I take Rock Steady Boxing classes three times per week.

g)      There are many good exercises you can try, and I provide more details about each of them right here in my blog.

h)      Find some type of a hobby to keep yourself occupied.  Set aside a certain amount of time every day or week on your hobby.  Select something that will challenge your mind, and something that you may find connections to the issues you are working on.

i)        I started publishing a blog about Parkinson’s and exercises that helps me and hopefully others in managing PD.

j)        Join a local Parkinson’s support group or one of the online support groups.  I would recommend PatientsLikeMe.com.  You can share your experiences, and find answers to your questions about Parkinson’s.

k)      Check out some of the articles in my blog, it has a lot of good information about managing Parkinson’s and keeping positive attitude.

l)        Never give up in fighting Parkinson’s; practice the seven skills of Perseverance that Tim describes, and you will be amazed what you can achieve.

I would strongly recommend to everyone with Parkinsons disease, and all caregivers to read this book.

Tim writes,Our best is good enough if we have the courage to see it through.  Dont ever give up on yourself.  I guarantee youll be amazed at how far your best will take you.”  Perseverance can be learned, just like any other skill.

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.

 

Please provide me your feedback.

April is Parkinson’s Awareness Month

I am glad we are having Parkinson’s disease Awareness Month.  Today, worldwide it is estimated there are seven to ten million of us with PD.  I am doing well in managing my PD. Hopefully with Rock Steady Boxing three times a week and walking six days a week the progress of my PD has slowed.  It has been two years since I was diagnosed with PD, and my doctor says I am doing well, and she has not increased my medications.  So, that is a good sign.  The Parkinson’s Foundation of Western Pennsylvania were recognizing Parkinson’s awareness month by giving away free tulips and PD awareness cards during lunch hour in Market Square here in Pittsburgh.  Rock Steady Boxing Clubs are holding special events in recognition of Parkinson’s awareness month.  The Michael J Fox Foundation has scheduled special events throughout many cities to recognize Parkinson’s awareness month and to raise donations for Parkinson’s research.  Click here to read about the latest breakthroughs in PD research.  We can all help by making donations to our favorite charities.   Another easy way to contribute is by using Amazon Smile and selecting your favorite Parkinson’s related organization. Find out more about Amazon Smile here.

 

Fight Parkinson’s with Exercise Really Works.

The Michael J Fox Foundation reports that forced exercise studies on Parkinson’s disease (PD) have shown improved mobility and quality of life, and possibly slower rate of disease progression. People with Parkinson’s disease (PD) benefit from many types of exercise — boxing, cycling, yoga and others. Regular physical activity can ease motor and non-motor symptoms, boost mood and improve quality of life. It’s good for general health and well-being and, in some cases, just as important as the medications your doctor prescribes to manage PD.

Rock Steady Boxing Association and other research on exercise studies confirm similar benefits experienced by Parkinson’s patients. Check out the detailed reports on these findings on the articles published on this blog and the referenced links.

Quotes from the “In Your Corner Publication, published by the Rock Steady Boxing, Inc”: “The overall message regarding PD is that exercise you do consistently will help improve your Parkinson’s symptoms and your overall health.  Some even say it might delay the progression of the disease. When you are diagnosed with this disease where exercise becomes one of your first lines of defense and is no longer an option but a necessity.”

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 as medical advice. Before contemplating any actions by the reader should first be discussed with a qualified medical professional.

The DNA study of Parkinson’s

I came across an interesting article in “The Science of Parkinson’s Disease” publication posted by Simon from the University of Cambridge (UK): https://scienceofparkinsons.com/2018/03/04/associations/#more-49812
23andMe and The Michael J Fox Foundation have joined forces for the “Fox Insight Genetic Sub-Study powered by 23andMe,” using DNA data from PD patients. The researchers are analyzing DNA data from Parkinson’s patients that could have a possible influence in the development of Parkinson’s disease. 23andMe has the world’s largest genetic study of Parkinson’s disease (PD), now more than 11,000 participants strong.
Previously I did my DNA analysis with 23andMe, and was so impressed by this initiative that I registered to participate in this Fox Insight study.
If you are Parkinson’s patient you can help in this Fox Insight research study by registering at: https://foxinsight.michaeljfox.org/. If you do enroll and have not previously provided DNA sample, you will have an option to access 23andMe Health + Ancestry Service at no cost, and receive a complementary genetic counseling on PD associated genes included in that report. Please share this article with anyone you know with Parkinson’s.
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 as medical advice. Before contemplating any actions by the reader should first be discussed with a qualified medical professional.

11 FACTS ABOUT PARKINSON’S DISEASE YOU MAY NOT KNOW

There is a good list on Parkinson’s News Today reviewing some facts about Parkinson’s — some of which are surprising.  For example, the youngest recorded case of Parkinson’s was a child only twelve years old.    

https://parkinsonsnewstoday.com/2018/03/05/facts-parkinsons-disease-may-not-know/?utm_source=PAR+E-mail+List&utm_campaign=eca90999cd-RSS_WEEKLY_EMAIL_CAMPAIGN_DAILY_US&utm_medium=email&utm_term=0_62dd4fb5e3-eca90999cd-72789457 .