I am not sharing this for my benefit but for you, your family and friends.
Parkinson's disease is overwhelming in every way. I tirelessly tried every treatment, researched countless studies and have found some techniques that work. I am the only person in Hawaii with both Deep Brain Stimulation and DOUPA or what I like call "The Double D."
My quest for knowledge consumed thousands of hours. But it was worth it. I love my community and I enjoy giving back. I am always available to talk story and/or visit my blog at:https://www.thrivingwithparkinsons.com
It's not uncommon for friends to tell me how surprised they are that I am still walking since the other Parkinson's people they know are in wheelchairs already.
Wheelchairs are like Mermaids beckoning you to give your body and mind a break. Muscle atrophy is remarkably quick. An addiction impossible to escape.
Parkinson’s people never leave their house which is the worst choice. It's surrender.
They keep their disease secret which limits their support network. Most don't share with their own family. Leaving your home requires constant masking of your symptoms which is exhausting. My own brother-in-law didn’t tell his family for 15 years.
Parkinson’s people never exercise, stretch, slowly become immobile & wheelchair bound. Ultimately losing their independence.
No one likes being judged by their appearance – tremors, slow movement, and slurred speech. Occasionally someone will ask me when I am alone “where is your guardian?”
Parkinson's people are socially frustrated and misunderstood due to their speech impediment. Last year I walked up to a tourist and started talking to them and they responded, “Sorry, I speak English.” Which I replied, “me too!”
Parkinson's people become isolated socially. Depressed by the degenerative aspect of progressively getting worse with no cure.
They lack good medical care with only 6 Parkinson’s specialists in Hawaii with all located on Oahu for 2,800 to 4,200 patients. Parkinson's is a popular disease with constant research, only someone focused on parkinson's could provide good treatment.
My story isn't about a miracle, being a hero, special family genetics, injury free, wealth or unicorn uniqueness. In fact, I have had more than my fair share of surgeries for knees, hip, hands, chest and even brain surgery. IMHO I have more challenges than most people.
I live my life based on the state of mind consisting of being thankful, fierce determination, my best days are ahead, no regrets, living in the now and improving my community.
My story is about knowing how fortunate I really am. There are children with worse medical problems, pain, dirt poor, freezing cold, and no food but they're still happy. Remember my situation could always be worse. My cup is half full. I am always very thankful.
Self pity
"I never saw a wild thing sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself."
DH Lawrence
My story is about constant challenges, failures, learning from my mistakes and with fierce determination reaching my goals. It’s about never giving up. Using Challenges to make me wiser, stronger and a better person.
My story is about knowing that my best days are ahead of me. I still amaze myself with what I can create. Even though I am physically slower, my brain is going faster.
My story is about living in the now. These are the cards that I have been dealt. I cannot change that. Time is precious, my bucket list grows.
Serenity Pray
"God grant me the serenity to accept the things I cannot change,
courage to change the things I can change and wisdom to know the difference."
These are few ways to engage in your care and build a state of mind of hope not despair.
Carpe diem! Seize the day.
If I can do it with all my challenges , anyone can. Engage. Get engaged in your health. Do your part. exercise, stretch and move. Learn to fall without injuries. Leave your home often. Socialize. And a cute puppy always helps...Bella surely changed mine.
So if you know someone stuck at home send them to my blog at https://www.thrivingwithparkinsons.com
Their story can be about Thriving with Parkinson's too.
Time to get moving.