How To Be A Parkinson's Disease Fighter

We are thrilled to be able to share some information on Parkinson's Disease with you for this blog, and even more thrilled that Carisa Campanella, the Program Director for Neuro Challenge Foundation for Parkinson's, has given us a wonderful contribution for this topic.  If you would like more information, you can contact the foundation by going to their website at www.neurochallenge.org, or by calling 941-926-6413.

Getting a diagnosis of Parkinson’s disease is a life-altering event. Many questions arise for the newly diagnosed person with Parkinson’s.  How will Parkinson’s affect my ability to walk? Will I be able to work? Will people stare at my hands when they tremor? Will I die in a wheelchair?

There are no easy answers to these questions as Parkinson’s presents differently in each person affected by it. The major symptoms of Parkinson’s disease - slowness of movement, muscle stiffness, hand tremors and altered balance can vary widely. One thing however is consistent: there are two types of people with Parkinson’s disease – Parkinson’s sufferers and Parkinson’s fighters.

Muhammad Ali has said: “Parkinson's is my toughest fight. No, it doesn't hurt. It's hard to explain. I'm being tested to see if I'll keep praying, to see if I'll keep my faith. All great people are tested by God” Choosing to fight a neuro degenerative disease takes strength, grit and tenacity. Having a support system such as an involved friend, family member or spouse can help fuel your fight. The greatest benefit of fighting Parkinson’s disease is that you empower yourself to live an active and productive life despite the challenges the disease presents. You enable yourself to continue to be a loving and involved person in the lives of your friends and family. You continue to pursue the activities that have brought you enjoyment in the past even if you must make modifications. Fighting Parkinson’s begins with your attitude – your belief that this disease does not define you, although it has become a part of your everyday life.  Having had the privilege of getting to know many Parkinson’s fighters, here are some qualities they possess that should give hope to anyone diagnosed with this disease:

1.       PD Fighters Educate Themselves: Fighters make a point to learn all they can about the symptoms they must face. They attend support groups, symposiums, and see their doctors regularly.

2.       PD Fighters Follow Their Physician’s Treatment Plan: Fighters make sure they have a good working relationship with their neurologist, and they get second opinions if they feel it is necessary.

3.       PD Fighters Exercise and Eat Healthy Foods: Fighters know that exercise and good nutrition can slow down the progression of the disease, and they go to great lengths to take care of themselves.

4.       PD Fighters Talk to Each Other: Fighters know that no one else can truly understand what their experience is like as well as someone else fighting the same disease – and they are quick to share strategies that help them.

5.       PD Fighters Accept Their Disease: Fighters will say that acceptance is not always an easy place to come to – but it is the first step towards positive action.

6.       PD Fighters Pay it Forward: Fighters know that Parkinson’s awareness will bring about more community services and resources – and they are willing to lend their time, talents and efforts to this cause.

Managing Parkinson’s disease is not an easy task, but it is possible to live well despite it. Choose to live your best life despite the challenges you face. There is an abundance of help and support waiting for you!

Denial: The Other "D" Word

I can't imagine anyone who would go to the doctor with their loved one, hear a diagnoses of dementia, and say, "Okay, that sounds great!"  Most of us would tell the doctor they must have misread the tests, they don't know Mom like you do, thanks but no thanks!

Dementia is not an easy pill to swallow, but denial of the diagnoses may actually be more harmful in the long run than accepting what is coming and taking the bull by the horns.  While at this time there is no cure for dementia or Alzheimer's, if you act early enough, you can still enjoy plenty of wonderful years with your loved one and we can always hope that a cure will be found sooner than later.

Some of the dangers of denial include the potential for accidents or injuries, delayed treatment and hygienic decline.  And that is just for the dementia patient.  Caregivers are also more prone to health problems as the stress of taking care of someone with memory issues can play a big part in declining health and even heart issues. The longer the denial remains, the more these risks increase.

Dementia patients are often more comfortable in a living space that is not overwhelming.  A smaller community or area may be of great benefit to their mental wellness.  However, when the family is in denial and insists on something they think Mom or Dad would love because they always used to enjoy the grand ballroom or the sprawling gardens, they may in actuality become more agitated because of the constant activity or noise.  Placing them in an area that is not as big can give them more of a sense of security and peace.

A great example of this is pets, more specifically the canine variety.  While proud Americans are thrilled to show their patriotism each year for the 4th of July holiday and they want to celebrate with all of their family members, you hardly ever see a pet mommy or daddy taking their dog to watch fireworks.  Why is that?  Because although the fireworks are beautiful, the human knows that the dogs' sense of hearing is heightened and the loud noises frighten him and will agitate him. And thunder jackets are also a big sell for doggy households when the spring storms roll around.  If we would take the extra measure to make sure that our pets are at peace, we also need to take into consideration that our loved ones can have the same types of reactions to noise and activity. Don't force your loved one to live in a situation that is difficult for them.

It is very important to remember that a denial of the disease does not delay that disease.  What it does delay is the peace that can be found by acceptance and being proactive instead of reactive.  I am blessed beyond measure to work in a community with so many wonderful residents that my cup overflows.  I have the luxury of knowing them exactly as they are, not as they were.  Some are able to share stories of their past in the Navy, in the operating room, as a teacher.  It doesn't bother me if they tell me the same thing every day.  It doesn't bother me if they ask me the same questions every day.  It fills me with joy to see them enjoying things like pet therapy, bingo, live entertainment.  There is almost a child-like wonder in their eyes as they discover something new each and every day, even if they discovered it the day before. 

Another thing to remember is dementia will never get better.  There will be good days and there will be bad days, but on the good days, don't try to convince yourself that you can now take Mom home because she is "fixed."  The best thing for Mom is to remain in the place she is receiving care, whether it is with a home health nurse or in a community, so she can continue to get the same level of care that gave her the good day in the first place.  Step outside of the situation to get a clearer view.  Allow the professionals to do what they are trained to do.  Even trained medical professionals are not allowed to treat their own family lest their judgment be clouded by emotion. 

The last suggestion is to refer to the Alzheimer's Association for additional information, resources, and places to reach out for support.  There are support groups all over the country.  Talk to your health care provider to find out who to contact in your area. Don't look at the diagnoses as a death sentence.  Become an advocate.  Life is what you make of it, so make it beautiful.

Exercising: Build Your Brain Muscles

Technically your brain isn't a muscle, but that doesn't mean you can't "workout" your brain strength.  As a matter of fact, physical exercise has shown to have a positive impact on many things related to brain function, including memory loss.

Exercising gets the blood flowing and can boost endorphins.  Most people think of that as something that makes your mood better, but endorphins also help you maintain a sharper memory and encourage the growth of new brain cells. I discovered that earlier this week when I was blessed to attend a seminar on brain health.  The doctor giving the presentation stated that it was previously thought that you could not regrow brain cells, but that has been proven to be false.  He also said that sleep is very important to brain health, and different people may have different sleep needs.  Electronic device usage is discouraged right before bed as well.

One of the portions of the brain that plays a role in memory and learning is the hippocampus. Exercise helps prevent the hippocampus from degeneration.  It doesn't completely stop memory loss, but it aids in slowing that process so the degeneration is not as severe. But the type of exercise you do is important.  Strength training is not going to have the same effect as aerobic exercise, so don't worry about those bar bells.  And you also don't even need to get a gym membership because walking will do just as well as an elliptical.

Studies show that moderate exercise done for 30 minutes 5 times a week is all you need.  That could be a nice walk to the post office and back at a somewhat brisk pace, or a walk around your condo complex.  I was always told, too, that a 6 minute mile is just as far as a 12 minute mile, so maybe try for a specific distance to get yourself motivated.  I currently utilize a Fitbit step tracker, and I was always getting my 10,000 steps a day, so I raised that to 15,000 to challenge myself even more.  Sometimes I hit my goal, sometimes I don't, but it is just that little bit more motivation that gets me up from my office chair or off of my sofa to try to get a few more steps in.

Walking outside provides an added benefit.  While too much exposure to the sun can be harmful to your skin, if you use sunscreen and get sun in smaller amounts, the Vitamin D can help improve your mood as well.

Don't feel that you have to start out hitting your goal every single day.  If you are not used to exercising, start small.  Work your way into the goal.  Even a small bit of exercise is better than no exercise.  Get with a friend to walk.  Having someone with you that you like to talk with will help the time fly by and make it easier to want to get up and get out.  If the weather is questionable, walk inside.  Many shopping malls have something similar to a walking club so you can not only monitor your distance, but you may be able to make new friends who like to walk as well.

In a time where a new dementia case is reported every 4 seconds around the globe, it is important that people do as much as they can while they are still able to. So put on your walking shoes, grab a friend, and discover your surroundings.