Training Summary

Kaena Point Hike

 

Hiked Kaena Point today.

5 miles

2.5 hours 

Falling demons be gone.!

There are 25 Parkinson's symptoms but only one scares me... losing my balance

Falling is scary. Sometimes it slowly happens, Other falls are a complete surprise. I always fall in slow motion. Everything slows down. Often I sense the awkwardness of the body falling followed by the collision and bewilderment. The fear and the quick damage assessment. My mind replays the fall for days or months.

In the past 5 years, I have had 3 really bad falls resulting in significant injuries, 15 falls with no injuries and 60 near falls.

My brain is always assessing the path of the least risk. I have been fall prone for about five years. Every bad fall is too many... but it could be much worse. I am fortunate to make thousands of good choices. The good news is that I have learned the hard way and made some changes which substantially reduced my falls.

While I am tempted to use a wheelchair, I know I will never walk again and my health will decline faster. My best option, is to keep moving, kore fall training anf make even better risk decisions.

My first bad fall was the result of a bad tendency when I froze to lean forward to initiate movement which resulted in an awful shoulder dislocation combined with long emergency room wait causing nerve damage and paralysis of my left arm and hand. The most painful injury.  It's been a long road to regain function and I have a way to go, but I will get back to zero. This injury taught me not lean to initiate moving and to immediately rehab injuries to regain functioning no matter the effort and pain.

My second bad fall was result of rushing to the front door for a delivery resulting in surprisingly fast and an awkward fall resembling a tree falling. It's chipped my front teeth during the pandemic. The chipped teeth reminded me of crack addicts and l avoided leaving my house. I wore a helmet after this fall. I learned of the "how to fall classes" and attended one to reduce injuries.

My third bad fall was a real eye opener falling from the top of a 5 foot ladder backwards onto a hard concrete garage floor. The fall class I took after the second bad fall saved my life. I was totally surprised to find the ladder under me was tipping sideways on two legs.the other two legs were way off the ground. I hadn't sensed any movement until it was too late. Things slowed down. I recalled my "how to fall" teacher saying tuck your head pressing your chin into your chest and roll onto your side. Surprisingly my Parkinson's body responded and I tucked and rolled on my side, my left hip hit the hard concrete and instantly fractured. No head trauma. It was an excellent result fot falling backwards from five feet height on a hard concrete floor. No believed I hadn't hit my head.

I am very fortunate. It still haunts me to this day. I will never use a ladder again. 

Parkinson's doesn't kill but parkinson's symptoms cause falling which does kill. While a wheelchair will greatly reduce falling, the human body is designed to move not sit. Muscles are essential for  everything humans do: movement, eating, drinking, eye sight, talking, bathroom.,.everything. Inactivity is by far the #1 contributing factor to death . My good friend is a chaplain and he says 90% of people  dying are wheelchair or bed bound. 

Keep moving and be safe! .

Maile Point Pillboxes

Maile Point Pillboxes

A short, steep and rocky trail. A great challenge for anyone.

I'm sure 

A test of my Parkinson's balance, strength and climbing skills. What I learned;

• If wet don't do this hike
• Starting after a stop is very important tricky.  Be careful
• Use only one walking stick and use free hand to grab trees and rocks (build left arm strength)
• Lean into slope 
• Hiking boots

Aiea Loop Trail

Longest hike in 3 years

•  4.76 miles
• 2:27 hour
• 1520' ascending
• 725' descending 

Slight right knee pain

Parkinson's Quick Start

Parkinson's is a major disease affecting roughly 1-2% of the population. It is highly variable disease with varied rates of progression affecting patients differently. 

Here's what I have learned are the keys to thriving with Parkinson's.

State of mind

Happiness, fulfillment, perspective and positivity are a state of mind.  Everyone has challenges in their life and parkinson's just happens to be your challenge. Dwelling on it will not change anything. Don't go it alone, build support by sharing with your family and friends. You are so fortunate to live in this era of new medicines, technology, live in Hawaii and wealth. Your best days are ahead of you. It's all about your State of mind.

Exercise

Your  Parkinson's symptoms with proper diagnoses and treatments can be managed to retain function but only exercise can slow progression of Parkinson's.  You alone limit or thrive but you must engage in your care.

Medical specialists

Parkinson's is highly varietal, complex and constantly benefiting from new research. To receive the best care available requires a specially trained neurologist called a Movement Disorder Specialist. There are only six in Hawaii. Similar to your primary care doctor, your Movement Disorder Specialist will be your Parkinson's primary care doctor directing a team of medical professionals. It is important to choose medical professionals with experience with Parkinson's treatment. If in doubt get a second opinion, attend your local parkinson's support group and if necessary travel to receive the best care available. 

Home improvements

Your home should be your safe space. Remove or modify dangerous elements. Increase safety in bathrooms with grab bars. Use aids as necessary. Consult with a n accessibility professional and occupational therapist. 

lineAppointment preparation 
Parkinson's is complex with both physical and mental elements. Early Diagnosis of new symptoms requires recognizing and documenting your symptoms and communicating with as much detail as possible. Preparation for medical appointments is critical. 

Your quality of life can be excellent but it is dependent on you being 100% engaged.
Thriving with Parkinson's is completely in your hands.

Milestone #2 solo 4 mile hike

Baseline for training: 

The average day of walking on the camino involves walking 15 miles on a mix of dirt farm roads and asphalt roads and ascending 1250 feet .  I need to finish every day with enough energy to find my accommodations. Shower. Wash clothes. Grocery store for ice and breakfast. Dinner. 

The Moanalua Valley trail is very similar to walking the camino: park 2 miles from dirt road 11 mile hike ascending 1100 feet. 2 miles of asphalt road at the end for a total 15 miles. I will gradually get to this distance ? Most likely in Jan or Feb. Baby steps. Today just 4 miles . This will be my measure my training progress. 

My metrics are distance. Time. Assent. Sleep . Balance,  endurance, weight , flexibility and left arm use

Distance 4.1 miles         s/ b 15-17’

Time 2 hours 7 minutes (s/b 5-7 hours)

Pace 30 minute miles     (s/b 15 to 25minutes)

Assent 350 feet

Sleep 4hours                 (s/b 5-6 )

weight 191                     ( s/b 180)

Endurance 45 min         (s/b 6-8 hours)

Balance- Today was a “7” only required for downhills (s/b 9 or 10)

 

Balance Metric Scale 

1. fell 

2. started to fall, 

3walking aids required, 

4 freezing during walking , baby steps 5. 

5freezing only with blendEd and rotating movements , 6. 

6freezing at start,of hike , 

7. Sticks only required for downhills 

 8. Minor imbalances 

 9. able to look over shoulder with no balance issues 

10. walk no issues.

Flexibility

lower back,pain Iimits Flexibility 

 Left arm Left arm is not automated, height 2-3 inched inches longer than right side . Better then pre hand surgery but needs work. 

 Notes: running shoes are not safe. Buy hiking shoes waterproof Low Walking sticks.

Make appt with hip doctor for clicking sensation.

Camino 2024 stages

 My plan

Update

 UPDATE

 4/12/2023

Weight 191 ( weight 2 years ago 234. down 43 lbs)

Goal 180

Tomorrow hike:

1.  mounalua valley for baseline 11 miles , 1,100 foot ascent
2. Test new osprey backpack 
3. Test keen shoes
4. Test hiking pole

Minimal gear

Travel as light as possible.  Less weight , less pain  :)

Wear daily

• Wide brim Hat
• Iwatch
• Prescription glasses and Sunglasses
• Quick dry high performing clothes - European colors
• Underwear
• Tee 
• Convertible pants
• Sock. Double layer. silk inner socks And merino wool hiking socks
• Walking shoes
• Velcro belt loop tightner
• Neck buff 
• Oboz hiking Shoes

• Money neck stash
• Cash, passport, pilgrim credentials credit cards

BACKPACK CONTENTS

Backpack Osprey  22liter

Goal: Less than 10 lbs

• Rain cover 
• Walking sticks 
• Head lamp
• Red blinking light
• Water bottle & electrolyte drink
• iPhone
• PDF guide  sights , excursions, elevation,
• PD information special needs
• English /Spanish phrases.  - hotel res, first floor, ice, cooler transfer, pocket earth, camino maps,
• Earphones

• Rain jacket 
• Long sleeve layering Shirt
• Energy bars, nuts, 
• Doupa cooler bag
• 3 min 5 max cartridges
• Pills
• Ziplock - first aid and pain cream

COOLER 

Yeti roadie 48 at wheeled cooler .. install combo lock and GPS tracker 

• Ice bag - ice/cold pack
• Temperature recorder
• Water proof bag
• USB quick charger (2 ports)
• Evening shirt
• Evening convertible pants 
• Underwear
• Merino socks 
• Flarut mens sport snadels
• Bathroom kit - travel size shampoo /conditioner, comb, small sham,My towel and clothes line, travel size underarm deodorant, cologne 

• Energy bars, nuts, 
• electrolyte mix
• PrePrinted delivery labels
• Meds
• 80 Duopa cartridges
• 60 Carbidopa levodopa Slow release
• 5pills x 5 times daily x 20=Carbidopa  levodopa500 
• 60 Ravustatin
• Blister med kit
• Pramipexole
• azilect
• Testosterone gel
• Summer sleep bag

• Lock 

Pictures

J

The big Announcement

 380 days until my next camino...the Camino Frances

My goal is to walk the whole camino Frances to Santiago de Compstella - 750 kilometers over 34 days of walking. Arriving in Santiago de Compstella on my 60th birthday 25 May 2024 . It will be the 10 th anniversary of my first camino.

I have completed 4 caminos : Camino del Norte 2014, Finisterre  2014, via podiensis 2019 and Cammino di francesco 2019. 

But this one will be the most challenging due to my difficulty walking and falling.

My challenges for solo camino:

• Fail safe medicine daily forwarding to next pension.
• Walking smooth inclines and declines
• Evening routine  dinner and next breakfast shopping
• Sleeping and movement without upwalker
• Waking up, duopa
• Doupa change before deficit
• Walking without knee and hip discomfort

My milestones to get to the start lineup:

• Stay injury free
• "Get back to zero"-restoring my  body to full pre injury condition
• Reducing weight (today 194: goal 185) to reduce wear and tear on legs
• More muscles for greater Resilience 
• Better flexibility
• Better balance
• Walk 25 km and 1,200 foot elevation gain. A local hike at Moanalua valley is the same as a typical camino Frances stage.

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