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.

What does dementia mean?

Unless you are living or working with someone dealing with dementia, you may not realize just what it is or how it is related to Alzheimer's.  Dementia is considered an umbrella term which covers many different types of diseases. I like to explain it like the term "sports."  Sports covers football, basketball, tennis, etc.  So "sports" is to "dementia," as "football" is to "Alzheimer's."

Dementia includes Alzheimer's, Lewy Bodies, Parkinson's related dementia, alcohol related dementia, and more.  It in and of itself covers a group of various symptoms as opposed to a specific syndrome.  The symptoms of dementia interfere with daily living and can eventually require additional care as it progresses. 

While there is no cure for diseases covered under the umbrella, there are forms of dementia that can actually be reversed.  One is alcohol-related dementia.  Unlike other forms, dementia caused by alcohol abuse is a result of consuming alcohol in excess over a long period of time.  If the brain cells are not irreparably damaged because of the alcohol abuse, the body can heal what damage was done, and the person could possibly return to full mental health. Other things that may cause dementia symptoms that can be reversed include medication, depression, thyroid, or even vitamin deficiencies.

Symptoms of dementia are not just memory related.  It can also affect vision, communication, focus, and reasoning. Symptoms also progress as time goes on.  It is recommended to address symptoms as early as possible to start receiving medical treatment which may actually help slow the progression.  One thing to consider as well is someone on the inside of a situation may not realize just how advanced the symptoms have become because they have seen the slow change day by day.  Someone on the outside will be able to recognize a concern more readily because the behaviors will not have become as "normal" to them as they have the family.  Another thing to remember, however, is that some memory loss is normal as a person ages. 

There are risk-factors which may help families to determine whether or not their loved-one is exhibiting symptoms of dementia or it is just an aging factor.  One of the biggest factors would include family history.  If it is common in the family, the likelihood is increased.  But only a trained medical professional can make an accurate determination, so it is recommended to seek medical attention if you believe dementia is the cause for any symptoms.  Another risk-factor to take into consideration is a person's health.  Someone who eats right, exercises, and has good heart health will not be as high of a risk as someone who doesn't monitor these areas. It is not an absolute when preventing forms of dementia, but it does help keep the symptoms at bay longer.

Once a doctor has determined that someone has dementia, it is best to follow the recommendations provided by the doctor and keep a positive attitude.  Many people with dementia are still able to have fulfilling lives with their loved ones.  And even though the symptoms will progress, it is difficult to say how quickly they will.  Make a plan, but also make sure to enjoy your loved-one as well. Support groups are a wonderful resource.  The road ahead may be difficult, so having the support of those who have been through it already will help you each and every step of the way. 

Transitioning to Memory Care

One of the toughest things to do as a family member of a dementia patient is to make the decision to move your loved-one to a community.  But once that decision is made, it is very important to develop a transition plan for the move to help with the next step.

When someone with dementia moves into an assisted living community, or other type of care facility, it can be very stressful for all involved.  The one with dementia is having their routine disrupted, which more than likely gave them a sense of peace and normalcy. The family may have to deal with emotional outbursts from their loved-one which may make them feel like they are being selfish or not attending to the needs of whoever it is they are helping place in a community. 

The first thing to realize is any reaction is normal.  Someone may be very happy to make new friends.  Or they may be very angry and confused.  You may see behaviors that you never witnessed before.  The best thing to do is to come up with a plan to cover many bases and scenarios so you are prepared to deal with whatever might happen.

Once a community is chosen for the dementia patient, start planning with your doctor and the community for the move.  The doctor may prescribe something for depression or anxiety to help prepare.  Medication management is very important when it comes to the well-being of all involved.  It will help alleviate the stress on the caregiver as well because the patient will have an easier time adjusting, which will help the caregiver release any feelings of guilt they may have.  There is nothing to feel guilty about.  People with dementia need levels of care that family members can't always provide.  You are doing the best thing for your loved-one and yourself.

Start the transition to the community as soon as possible.  Start going in to visit on a regular occasion so it becomes familiar.  If possible, begin participating in some of the activities even prior to move-in day to help acclimate the new resident to the people and surroundings of the community. Maybe the new resident can make a friend who lives in the community. It's also a good thing to try to make a connection with one of the care givers on staff.  If a relationship is established between the resident and care giver prior to moving in, this will also help alleviate some of the anxiety that may arise.

Some experts suggest using terminology for the community such as calling it a hotel, making the resident feel as if it is a temporary situation.  Our community promotes itself as a resort, and with our surroundings it is easy to do so.  When I am giving tours, I will tell the residents, if they ask, that I am showing someone around our resort because they may want to vacation with us.  Make it feel like an adventure and not a drastic lifestyle change. Once the resident begins to adjust to the new lifestyle, they may be more welcome to the idea of the permanent placement.  Or it may be that the family and staff will continue to tell the resident the situation is temporary.  Whichever helps avoid any agitation is the best path.

The adjustment period isn't just for the resident, but also for the family.  Their routine is also changing.  There may be a sense of grief, but there may also be a sense of relief.  Caring for someone with dementia is a heavy burden for anyone, especially if it is someone you have loved for years.  It's okay to grieve the loss of what used to be.  But there are still many wonderful days yet to come.  Keep a positive attitude, especially around your loved-one.  This will help the transition.  And find a support group.  The best medicine is sharing with people who know exactly what you are going through.  They can offer insight as to what you may face, and they can offer suggestions of how to cope with the new lifestyle.

"The Talk"

When you were a pre-teen or early teenager, your parents probably had "the talk" with you regarding boys and girls and love and marriage and etc.  Now, it may be your turn to have a different talk with your parents.

Our parents care for us and help shape us as we go from birth to school to marriage.  They are integral to who we are.  So as they reach the age that they may not be able to take care of themselves, and it may be too much for you to personally take care of them, you may need to consider a better lifestyle for all of you.  A lot of families struggle with the decision to place a loved one into assisted living, but the hardest part is often talking to Mom or Dad about how much it would help them have a quality life now that they are older.  Here are some tips on how to approach "the talk" with your parents.

The biggest tip is to not avoid the topic.  The longer you wait, the harder it will be for everyone.  Communication is key in all relationships, and you need to continue to maintain that open line of communication with your parents.  Maybe you aren't to the point that your parents would need assisted living, but that doesn't mean you shouldn't talk about it.  Let Mom and Dad know how much you love them, and even though they are still living life to the fullest, if there were ever a time they would need additional assistance, you want to make sure you know their wants and needs. 

It is also important to know what options you have for your loved one.  If you remain in communication with them or their health provider, you will know if you need an independent living community, assisted living community, or skilled nursing facility.  You also need to be aware of the financial situation so you can plan accordingly.  If your parents previously purchased long-term care insurance, they should be covered quite comfortably.  If they are relying on Medicaid or other government assistance, the family may need to pitch in to help cover expenses.  Plus the expenses differ depending on the need.  Make sure to educate yourself on all of these points.

Always keep your loved one "in the loop."  If Mom or Dad are involved in the decision making process, it will be an easier transition because they will not feel as if you are trying to control them.  They may already feel like you are trying to get them out of the house or shut them away somewhere and they will never see you.  To ease their minds, it needs to be a team effort.  We have a lot of families that come to tour our community with their loved one.  This has proven to be very beneficial for all.  Not only can the loved one see the community, but the child or caregiver can get some peace of mind by seeing the comfort level of the one in need as they take in the surroundings. 

Another tip is to keep the language upbeat and the mood fun.  We promote our community as a resort.  When people get to the point they need additional care, that doesn't mean that all of a sudden their personality changes and they don't enjoy what they used to.  By all means, they do still enjoy it, they just need a little help to continue to do so.  You can also choose your terminology wisely.  For instance, if you have noticed, I always use the term "community" instead of "facility."  Or even "resort."  The term "facility" elicits images of a cold and sterile environment, whereas "community" seems to be a more exclusive living situation, where only certain "members" are allowed.  We also utilize the term "apartment" instead of "room." 

Mom and Dad may still not be as open to the idea of moving to a community as you would like them to.  So make sure to listen to their concerns.  Be empathetic.  Don't dismiss their thoughts.  Address their fears.  And be prepared to tour several communities in several different locations.  You want to make sure that you find the one where they will feel most at home. Do the search together and set up the schedule together.  Many communities will let you eat lunch so you can see their menu options.  Make a date out of it.  And let them know you will not force them to go somewhere that they don't like. 

There is another type of talk that you may have to have with your parents, and it would be talking to one parent when the other is reaching a point they need to have more assistance than their spouse can provide.  It's very hard when you have been married to someone for 50+ years and now you have to consider not waking up to them every morning.  However, being a caregiver for someone has proven to play a toll on that person's health, and it may not always be beneficial to the one needing care.  Again, be empathetic.  You may need to do a bit of research to find facts to support your plight.  Talk with a professional about the benefits.  See if you can find a local agency who sponsors a support group.  They may be able to connect you with someone who was in that position and could share their story and how it worked for them. 

No matter what kind of talk you need to have, just know you are not alone.  You are not the first one who has had to face this, and you will not be the last.  It doesn't need to be a traumatic transition.  You can help turn it into an amazing opportunity for your parents or loved one.  And you can continue to be a part of their daily routine if it fits with your schedule.  Think of it as just moving to a different home.  One with 24/7 assistance when needed. No more cooking. No more washing dishes.  Your parents will now be free to enjoy each other and activities instead of the tasks they had to worry about before.  Senior living is a wonderful way to spend your glory days. 

Assisted Living Versus Other Options

Many people never have contact with an assisted living community until such time as their loved one needs placement.  For many, this means they are trying to make the decision about where to place mom, dad, aunt, uncle, etc., while also trying to deal with emotions that come from the realization that they can no longer care for that person on their own.  This blog will attempt to provide some education on some of the different types of facilities so you can "know before you go." 

We will start with the form of senior care that is most known, which is nursing homes.  Back in the 80s (or at least while I was growing up), the term nursing home had a negative connotation.  Maybe it was because I was young, but when I went with my grandmother to help her with bulletin boards or entertainment, I always tried to stay close to her because the environment felt cold, it smelled funny, and the residents didn't look like they were very happy to be there.  While the layout is still very similar, with the hospital-style beds, shared rooms, and communal dining, the ambiance has seemed to warm somewhat over the years.  However, the main goal of a nursing home is to provide long-term medical care for someone who can not live on their own. Nursing homes do not generally offer a wide array of activities as many of the residents would not be able to participate.  The biggest thing to consider with a nursing home is that they can provide a higher level of medical attention than an assisted living community. The nursing home may also be more medically feesible depending on the need as the costs can be billed to health insurance and/or Medicare/Medicaid, while an assisted living facility cannot be billed to insurance, and only partial coverage is provided by Medicaid.

The next option we will examine is the health and rehabilitation facility.  This can provide short-term or long-term care, again depending on the need.  It is most often utilized for the recovery period after something such as surgery, accident, stroke, heart attack or the like.  Many different types of therapy are offered at this facility, including physical, occupational and speech. Someone who enters the care of a rehabilitation facility is usually referred by a hospital after the patient has received initial treatment for their ailment but is not yet ready to go home. The costs of the care can be covered by insurance or government health care if the goal of the care is the overall health of the patient.

We will cover both assisted and independent living in this section, because often times a community will offer both options for potential residents.  With an assisted living facility, a resident can still live a somewhat independent lifestyle, but there is someone there for them who will help when they can't complete their regular tasks.  For instance, the resident can have their own room or apartment, or possibly a roommate if they prefer, so they have their own space and can bring their own belongings.  But the community will take care of daily tasks like housekeeping and meal preparation.  Services are offered including grooming, medication administration, memory care, and laundry just to name a few. There are shared common areas for eating and activities, and many communities will offer outings off-site with the use of a bus. There is additional surveillance and security, and depending on the level of care, it may even be enclosed with a key or passcode required for exit or entry.  This is especially true of memory care facilities.  With independent living, it is more of an adult community where residents may reside in apartments or villas.  They do have common areas the resident can choose to utilize and partake in activities, but they also have the freedom to come and go as they please, so they may take part in activities off-site. Many of these residents still use their own vehicles, and if the community is gated, it is not to try to keep residents from exiting.  It is the same level of protection as a gated community in a residential neighborhood.  Services are offered in an independent living community, but do not have to be utilized.  One of the great things about these communities is many of them offer an age-in-place option.  While someone may start out in independent living, as their needs increase, they transition to assisted living.  They would then be able to allow home health to come in when their medical needs increase, and eventually hospice when they are nearing the end of life.

I have been blessed to be able to tour many of our local communities and facilities, and am thrilled with the options for senior living.  In fact, there are many places I half-jokingly ask how old you have to be to live there.  The communities are beautiful, offer a wide array of activities and amenities, and all have their own unique niche.  It is very important when you are considering a place for your loved one to actually go to the site you are considering and take a tour.  Take a look at the facility.  Is it what your loved one would feel comfortable with?  Do the residents look happy? Is it clean? Would you live there?