Blog

The Fortunately Unfortunately Diet

Have you ever told a fortunately, unfortunately story?  I used to assign this to young writers to get their creativity flowing.  Fortunately, I am still around today to write about it.  Unfortunately, my storyline has changed.  Lately it goes something like this.

Unfortunately you have a chronic illness.  Fortunately, you can change your diet and you will feel better.  Unfortunately, you will have to give up some good stuff…sugar, gluten, dairy.  Fortunately, you can eat all the fruits and veggies you want.  Unfortunately, many of those fruits and veggies are covered with pesticides.  Fortunately, organic fruits and veggies are available, although…unfortunately, very pricey.

Unfortunately, you will have to give up meat.  Fortunately, not all the experts say to give up meat. Unfortunately, some experts say you should only eat organ meat (liver, gizzards etc.) Fortunately, the previous experts said you shouldn’t eat meat so you don’t have to eat liver. Just make sure that any meat you do eat has been raised on grass grown by leprechauns and that any poultry you eat has been sung to sleep at night by angels.

Unfortunately though, you will have to stop cooking with vegetable oils.  Fortunately, the experts say coconut oil is ok to use instead.  Unfortunately, other experts (your  doctor) says that coconut oil is a definite no-no and will raise your cholesterol.  Fortunately you can lower your cholesterol by eating Amla (gooseberries).  Unfortunately, they are grown in  India and you will need to find an Indian grocery story that carries them.

Fortunately, what you can’t get from your food, you can get through supplements.  Unfortunately, you never know what you’ll really be getting in those supplements.  Fortunately, there are any number of complete strangers online who will tell you which ones to buy (and even sell them to you).  Unfortunately, they are not really the experts.

Fortunately, you will eventually figure out what to eat to help you feel better but be sure you don’t wrap it in aluminum or store it in plastic…don’t even get me started on that one.

Fortunately, I can now go feast on some water and kale.  Unfortunately, the water must be triple filtered and the kale must be grown in virgin soil in my backyard.

 

Rx for Hope

I heard it again today.  I hear it every day lately.

“My doctor said I have PD.  I left with a prescription for meds that I know little about and go back in three months. I’m shattered and don’t know what to do from here.”  

This happened to me too almost a year and a half ago.  I get it now.  The doctors don’t seem to.  I’m praying that the neurologists out there somehow get the message.  What we need is a prescription for hope.  I’m not asking for false hope but even just a glimmer of something that we can do to fight back.  Just because today is miserable doesn’t mean every day will be miserable or worse.  Having PD means something has gone wrong in your body.  Not everything, but something.  The day of diagnosis is the day you should be given the resources to optimize your health.

My Rx for hope:

You are about to go into battle.  It is time to arm yourself.  You need to be strong.  Take care of your body…exercise.  If you never have, now is the time to start.  Move a little more each day. Don’t try to do it on your own.  Find a PD group to keep you motivated. Take a good look at your diet…with a professional.  Your food is your fuel and your medicine.  Treat it as such.  It might not be fun but fighting is hard work.  And of course, don’t forget your meds.  We might not like them but they often help.

Arm yourself with knowledge.  A good soldier knows his enemy well.  There is so much to know and it can be overwhelming to try to do it alone.  Build a healthcare team that will work together to do what is best for you, the individual.

It’s hard to fight a battle with little motivation.  Keep focused on the good things in life. Faith. Family. Friends. Joy. Love. Laughter.  Life is going to continue whether you have PD or not so don’t sit out.  Stay involved.  Get inspiration from what you see in the world and inspire others.

You CAN do this.

SCREW YOU PD

As the new year starts, I can’t help but look back to where I was a year ago.  I was still reeling from the “you have Parkinson’s Disease” conversation with my doctor.  I was in the midst of figuring out which meds worked for me.  I was still hiding my diagnosis from all but my closest friends.  I was stricken with anxiety about the battle that lay ahead.  PD is a “progressive, neurodegenerative disease.”  To me this said, today is the best I’m ever going to feel.  I will get worse with each passing day…well, SCREW YOU PD!  I don’t know exactly when it happened but at some point I decided that it didn’t have to be that way.  I decided to fight back.  It hasn’t been easy; in fact, it often feels like a full time job but my life depends on it.  Compared to a year ago, I am less stiff, my tremors are less, my gait is better, I sleep better, my energy is greater, I am stronger, I feel healthier,  my motivation is through the roof and I am helping others with PD.  God is walking right beside me on this journey and I can do anything when I keep my focus on Him.  I don’t know what this year will hold or what God has planned for me but I am excited to see how He is going to use me.  Together we will defy the odds. Here we go 2018.  Bring it on!

The Look

Today I got “the look” again when I mentioned to someone that I have PD.  The pause, the brow crinkle and this confused, uncomfortable, pity look.  If you have ever shared your really bad news with someone, you may have seen “the look.” Many people don’t know what to say when you tell them something like this and hence, “the look.”  They don’t know how to react and often cut out of the conversation quickly.  Guess what?  It’s ok.  Most people don’t know how to react and “the look” is something that just happens.  Today, I got a nice surprise.  The person that gave me “the look” asked me if it was ok if he asked me about my PD. We talked about my diagnosis and he wanted to know what I was doing for it because he couldn’t tell I even had it. It was a great opportunity to educate him on PD and its current treatments (both traditional and alternative). I think I surprised him when I told him that it wasn’t that bad and there were lots of worse things to have.  I let him know that prayer gets me through the day, that  I am doing well and fighting back. I’m happy to share my journey with others.  You never know what ripples you may cause when you share your journey… and most of us have journeys of one kind or another.  So next time you see “the look,” try not to see it as something negative, but as an opportunity to educate and maybe even inspire.

Waiting

I attended a conference this weekend where it was noted that it is the 200th anniversary of PD or at least when it came to be known as PD. In 1817, James Parkinson wrote an article on Shaking Palsy, today known as Parkinson’s Disease.  The next big development in the world of PD was the  development of Carbidopa/Levidopa as a medication to treat symptoms.  This happened in the 1960’s. In the 1990’s Deep Brain Stimulation surgery started  being used to treat symptoms. Lots of research is being done and newer treatments and meds are being used but there is still no cure.  And so we wait.  I’m not good at waiting.  I tend to be impatient and like to take action.  So while I wait, I exercise.  While I wait, I research.  While I wait, I participate in research.  While I wait, I educate others.  While I wait, I do everything I can to keep my body, mind and soul healthy.   While I wait, I am participating in this wonderful life that God has given me.  While I wait, I pray.  Waiting is allowing me time to find my purpose on this rollercoaster journey.  God is in the wait.  And so I wait.

My New Normal

Whether  retired or still in the workforce, we all have lives and having PD on top of that  only adds to the mania of daily life. No one wants to do Parkinson’s all day, yet we have no choice.   I am fortunate enough to only work part time but I often wonder how PwP, or other chronic illnesses, work full time and work on staying healthy.  My “new normal” involves going to the grocery store more often to get fresh produce and taking more time to plan meals. Long gone are the days of pulling through the drive thru to get a burger and fries when I don’t feel like or don’t have time to  make dinner.

Taking the time on the weekend to prepare food for the week helps keep me on track.

My “new normal” also involves finding time to exercise every day.  Sometimes I go to the gym, sometimes I go hiking, sometimes I go to yoga class and sometimes I can only eek out a half hour to ride my exercise bike or jump on my elliptical.  My “new normal” also involves many more doctor visits than I ever imagined, PD conferences, support groups, not to mention the hours spent doing online research. My “new normal” is crazy busy because I get to go to the gym, I get to go to good doctors, I get to go to grocery store, and I have access to a world of online resources.  Dare I say thank you for my “new normal?”  To be honest, I’m still working on that one.

Breathe

Sometimes life can get so hectic that I have to remind myself to slow down and breathe.  OK, I know I am breathing all day long but I mean the long, slow, deep breaths that go all the way to your toes and makes you pause.  Part of keeping healthy is taking some time for that kind of breathing.  It brings me peace.  I try to take some time each morning to just be still in my thoughts.  It is my time to center myself and talk to God.  It starts my day off with my focus on what is possible with God and not what isn’t possible because of this stupid disease. PD has a way of stripping away relaxation. It can turn life into a rollercoaster of anxiety.   I am learning to prioritize my quiet time and cherish each breath because each and every one is a gift from God.

 

 

Eat Like Your Life Depends On It

No two people with PD are alike. They say we are like snowflakes.  A treatment that works for one, may or may not work for another and side effects are a constant concern.  One of the biggest changes I made after my diagnosis was my diet. My dietary changes were first spurred on by Dr. Terry Wahls and her TED talk, Mind Your Mitochondria.  Dr. Wahls has MS.  She has also drastically improved her health by changing her diet. If it works for MS, maybe it could work for PD. What could be the worst thing that could happen if I started to eat more fruits and vegetables and cut out all the Diet Coke and other processed junk I was eating?  Worst case scenario?  I might get healthier?  Continue reading “Eat Like Your Life Depends On It”

Thinking Positive

I recently listened to a lecture by Richard London who is not only a PwP but a cancer survivor as well.  You can find out more about him at ahandbookforlife.com.  I thought I’d share some of his insights:

PD is what you have, not what you are.

Exercise as if your life depends on it, because it does.

Defining your new normal is a process.

Do not focus your PD research on the negative aspects of the disease because they may never happen to you.

Accept change as normal. Continue reading “Thinking Positive”