Baby steps

374 days before the Camino Frances 

First solo hike to Manoa Falls. 2 mile round trip..

Learning to walk 2022

 

Learning a to walk after 18 months of being immobile from bAck to back knee reconstruction and hip fracture 

Surgery and Parkinson's

What to expect and best methods for good outcomes 

• Most doctors have little experience with Parkinson's patients.
• Parkinson's patients tend to be over 60 years old and avoid surgeries.
• Parkinson's symptoms may conflict with surgery. Tremors and rigidity decrease successful outcomes of operation on orthopedic surgeries.
• You can increase the outcome by doing exercises 

Surgery preparation 

• Usually surgeries are early in the morning, if this will be too difficult for you. Request a later time. 
• Pack light. Leave jewelry at home . 
• Anesthesiologist will provide instructions including not to eat or drink after 10 pm. Ask  about your Parkinson's medicines needed for movements.
• Ask  about your Parkinson's medicines needed for movement  are wake up in the morning. Prepare the day before. 
• Inform your neurologist of an upcoming surgery and ask if your parkinson's symptoms will caused recovery problems, pain, insomnia or other issues. request medicine to prevent symptoms from complicating recovery. For example: Baclofen to reduce tremors  orthopedic procedures.
• Parkinson's patients tend to be rigid and slow when Anesthesiologist will provide instructions including not to eat or drink after 10 pm
• Request physical therapist with Parkinson's e experience.,

Day before surgery 

• Go to sleep early. Insomnia increases risk of falling.
• Type your list of medicines and doses for nurses.
• Pack and place in car or inside front door.
• Be ready. To go when you wake up.
• Pack light.
• Bring 2 days of Medicines

Surgery day

• Arrive early.
• Expect to arrive early morning . Its not uncommon to check in between 6-7 am. 
• Don't risk falling use a wheelchair today
• Hospitals usually Take possession of. All medicines and store at their pharmacy.
• Upon Check in you will be issued a yellow bracelets "fall risk"
• Your bed may have alarm turned on to go off when you stand.
• Hospital will assist  you anytime  you leave your bed.

Rehabilitation 

• Surgeries that increase risk of falling may require a rehabilitation hospital after surgery up to 2-3 weeks.
• Request physical therapist with Parkinson's training 

A Thriving State of Mind

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.

Ever wonder how much Parkinson's disease cost?

Costs

Parkinson's disease is a degenerative disease which increases in the number of symptoms and severity as the disease progresses. As your dopamine production decreases every muscle in your body starts to malfunction.

To complicate matters there are 25+ symptoms with the popular ones being rigidity, tremors, loss of balance, slow movement, freezing, loss of automation, loss of dual tasking, speech impediment and swallowing. 

This is compounded with natural aging symptoms such as rigidity, slow movement, loss of balance leading to injuries such as falling. Falling usually leads to a rabbit hole of more injuries further compounding your mobility.

Surgery for Parkinson's patients is more challenging as your involuntary muscle movements complicate recovery plus insomnia, mobility and increase in pain. Surgery is not popular with doctors or patients.

This is why it's critical with late stage Parkinson's disease to stay healthy and exercise as much as possible. Unfortunately 75% of parkinson's patients don't exercise. As the saying goes "if you don't use it, you lose it."

This is very noticeable in people using wheelchairs. Once you start using a wheelchair you never walk again.

I learned this the hard way over the last 5 years, falling quite a bit resulting in compounding injuries which less than 10% ever recover from.

For the last 18 months, I have fought tooth and nail to "get back to zero" to restore functions back to my 2016 level.

It's very slow, hard work and enduring new levels of pain. Meditation works well. A local physical therapist specializing in parkinson's, Kevin Lockette , sums it up perfectly- "Parkinson's isn't for wimps" 

I am not there yet but taking baby steps. None of this would be possible without the comprehensive medical team that gives me the opportunity to improve my quality of life. They are my rock stars. 

It's a large team but here's a couple. The maestro of the medical team is my neurologist, Dr Michiko Bruno at Queens. One of six neurologists in Hawaii that specializes in parkinson's. IMHO the best ever!

My hand surgeon Dr Eberlin at Mass General Hospital who believed I could be in the 10% that will restore my left hand functions after surgery. And Bryson Calma of Hawaii Hand and Rehabilitation Services - my hand occupational therapist who pushes me beyond my limits, but always with aloha.

Can't forget my medical insurance, which paid medical bills totally $513,971.56 in the year 2022. 

Lastly, my wonderful wife, cheryl who keeps me on track tirelessly making this all possible and my mother and Fletcher for their unwavering love and support.

It's hard for me to believe how many people invest their limited time in improving my life. It keeps me honest to do my best to earn the opportunity they are gifting to me.

I am so thankful for the energy invested in me and so fortunate to live in this time, medicines, technology and in this place - beautiful Hawaii nei. 

I recognize that this is one in a million opportunity and i will never take this for granted.

Mahalo nui loa

Surgery history

Surgery History 14 surgeries between 1982 - 2023
(8 in the last 6 years)

1982 Hand nerve surgery
1986 left Knee cartolege repairs
1987 left Knee acl
1991 right Knee acl
1994? right knee acl #2
2005 right knee acl #3
2017 Deep brain stimulation - lead installation
2017 Deep brain stimulation - battery
2020 Duopa installation surgery
2020 left Knee replacement surgery
2021 Deep brain stimulation - battery replacement surgery
2021 left Hip fracture surgery
11/4/22 left hand surgery
01/11/23 Doupa jpeg replacement surgery

Hand surgery

In June, I had a ZOOM call with Mass General hospital hand doctor Kyle Eberlin, a plastic surgeon. Hand surgeons have degree in hand surgery or a plastic surgery with hand specialty. 

 Dr Kyle Eberlin Is a young plastic surgeon with an Impressive volume of work and well published..  He was booked until late October. I arrived in Boston on October 25th. I met with Dr Eberlin and Jay on October 31st. He examined my left hand and drew his plan on myleft arm. The strategy is to phase the surgeries over a couple of a surgeries for maximum benefit. The first surgery November 4th will focus on: 1, increasing the range of motion of my left wrist. 2. increase range of motion of my knuckles in opening my hand . 

 It's a surgery day and will take 2-3 hours. An early morning surgery at 530 am. We arrive at 415am and wait til 630 am to be called. It turns out the delay is due to Emerson Hospital not sending the covid results to MGH. Doctor Kyle Eberlin does a final assessment and decides a more aggressive approach is necessary. His team includes 5 surgeons. 

 The surgery lasts 4+ hours. It's noon when I awake to an incredible amount of pain. I feel like I am going to pass.m out. Most pain ever, well beyond a scale of 1 to 10.

It's overwhelming. I receive a quick dose of pain meds... it's lights out. It's 3 pm when I awake again .still extreme pain. More pain meds. More sleep. Wake up after 5 pm. Painful but manageable. The nurses want me to walk. It's been a long day for mom and fletcher. They want to go to home. It's Been a long day for everyone,

The Honda Civic requires me to bow low to enter. While I will probably be ok getting in the car at the hospital. I doubt I will be able to get out in Concord. My mother and Fletcher  are both in their early 80s. I am exhausted. To complicate matters, I forgot my Duopa medicine so my Parkinson's is in full effect. This is a recipe for falling...

MGH has no beds available. 100% occupancy. I am the last patient in ICU in the entire Hospital. I try to stand up with the help of two nurses but 2 steps and I freeze. 

 At 8 pm they find a spare bed. Mom and Fletcher go home. Fletcher returns 10pm with my Duopa meds. The end of a very long painful day. I finally feel safe and relax.

I  enjoy three ice cream sandwiches before finally going to sleep.

I learn some valuable lessons about surgery and Parkinson's.

-if your injury can in any way increase your odds on falling be proactive exhausting medicines, surgeries, therapy, home modifications , etc

- Few Parkinson's patients have elective surgeries 

- Few doctors have experience with special needs of Parkinson's 

-Parkinson's patients can become more sensitive to pain resulting in increased intensity of pain

-Hospital policy dictates patients medicines must be stored in hospital pharmacy under hospital control

-Surgery excites Parkinson's tremors causing pain, insomnia in the area of  surgery.

-Iinform your neurologist of an upcoming surgery and request medicine to prevent tremors complicating recovery.

-inform doctor of need to stay overnight before going home