Reply To: What are all of your symptoms that are PD related. Please list them.

[Andy C]

G’day my fellow PD Warriors and your families.

I am Andy, a 53-year-old Australian living in a beautifully calm and safe suburb of Mexico City with my soon to be wife Alejandra and our two dogs Chewbacca and Bella. Besides just sharing my symptoms I will share my story as believe we should always look at both sides of life Parkinson’s Disease.

I was diagnosed 4 years ago aged 49 at stage 3 Parkinson’s and now at 53, I am mid stage4. Below is my lengthy list of current symptoms and these are on top of my other conditions of Diabetes type 2 and neuropathy, COPD and chronic osteoarthritis and osteoporosis:

SKIN – dried skin, scaly legs face and scalp
EYES – vision diminishing every 6 months new prescription and dry eyes,
EARS – 60% hearing loss – hearing aids & NC Headphones for tv, radio & phone
NOSE – loss of smell and reduced sense of taste
SALIVA – drooling constantly (change shirts 2-3 x a day & always carry hand towel
ORAL – swallowing difficulties particularly red meats
VOICE – initially went raspy, and now very soft and I swallow my words.
GASTRO – Extreme constipation sometimes up to 7-8 days & constant chronic gas
INCONTINENCE — infrequent during day & overactive at night every 1 or so (I am on limited 1250ml total liquids diet, and it has helped, with only 1 coffee in the morning and the rest of the day sips of water or mineral water.)
FALLLING BLOOD PRESSURE – resulting dizziness and falling episodes.
CARDIAC ARRHYTHMIAS — mild arrhythmia
LIMBIDO – lost for over 8 years but I still have a warm and cuddling relationship.
DYSKINESIA – muscle cramping of hands & Fingers, Calf, hamstring and feet multiple times a day and sometimes whole-body seizures almost like Grand Mal seizures.
BRAKYNESIA – rigid, stooped posture and slowed movement,
FROZEN GAIT – Freezing and falling.
COLD TOLERANCE – can’t bear the cold, even today in Mexico City its 26C and I am wearing shorts, heavy track pants, 2 t-shirts, a hoody and sometimes a blanket and ugh boots.
HICCUPS/SNEEZING – almost one in the same longer lasting with a choking affect.
SLEEP – chronic insomnia, on average I sleep 2 – 3 a day, and few times a month I have narcoleptic episodes.
CLUMSINESS – combination sight, hearing, freezing gait.
FATIGUE – always.
DEPRESSION – yes, but I am constantly working on it.
DYSTONIA — yes
HALLUCINATIONS – both visual and oral regularly
MEMORY – short term memory, loss for words, names and numbers
LOST CONCEPT OF TIME: combination of many symptoms

I need help with basic things at home, can’t get out bed so generally remain all night in armchair or couch and use walking stick to get up.  I am housebound because I have gotten confused and lost quite a few times. Not allows to use stove or oven unless my fiancée is home; burnt to many pots dry.

Due to osteoarthritis & osteoporosis I have to have both shoulders totally replaced with reverse prosthetics and both hips need urgent replacement.

I try to stay positive and do a lot of coloring in and listening to audio books and reading kindle when I can.  I use dictating software for most of my writing, text and messaging.

My current focus self-help project is building a Lifetime of Memories Book that I hope will work as a memory jogger, as my memories further decline.  I am using a 600-page bound book where I stick in photos, email, memorable chats, comments from 100s of old colleagues via LinkedIn that i will print, add pictures & comments. I also add all my art stuff to show I was doing things to keep my eye hand coordination.

I still try to cook our dinners on weekends.

I spend hours cuddling and playing with my dogs Chewie (4yo Boston Terrier and Bella (16mth old) adopted mixed street dog. They also act as my eyes and ears.

My neurologist wants me to have an apomorphine pump inserted in my gut to get better management my on / off periods which are happening more frequently and lasting longer.

I will start seeing a psychologist in a few months to clear my head of the negativity I harbor from the stop working and social interactions, the process by which I was forced to leave my company and the extended legal battle and the worst was watching my dad ultimately die from Parkinson’s and dementia at aged 80 but only diagnosed in his early seventies, and not being able to be with due to my diagnosis and medical experimentation and the COVID period. Also, the frustration difficultly off getting my pension funds to accept that I was legally forced to Retire due permanent disability at age 51 by the Dutch Health and Labor Relations authorities 2 year but the funds are unwilling to budge as they any retirement is 55 earlies, This has left me to live of savings of which i have used to pay all medical, surgical, diagnostic and treatment cost as it all took place whilst on a work assignment in Mexico. So, 3 hospitalizations, multiple MRIs, CTs, X-rays and physio treatments and monthly medication costing about us$1500 per month.

There is hope now as the Australian Tax Authority and my Australian Pension have a early partial compassionate release for medical expenses which I am in process of applying for which will take away our current financial I have put on my fiancée the only earner in the household. This will allow us to have some of the urgent procedures like one shoulder replacement and apomorphine pump placement, then take a two week break somewhere very quiet so we can try and forget the negativity of the problems of last five years plan for the calm happiness of our lives, and then buy a 2-3 bedroom, 2 full bathrooms condo with a small enclosed courtyard which we will have one modified for my current and future needs such step elderly bath, Bed Lift pulley, and other safety features and have it finished paid up in within a year from now.  Leaving use safe and secure home for us and ultimately Ale after I pass.

So yes things could be better but i refuse to dwell on my situation, because I can lift my mood and stay bright and happy if Ale and I openly really talk about everything, finances, priorities and planning for the future. It gives me great comfort that everything that can be done will be done and I will a leave a legacy of security for my future wife with a fully owned new condo with all modern and green efficient appliances etc. and college funds my two daughters from a previous marriage.

I apologize for the long post, but I refuse to talk only about the negatives of Parkinson’s and the sudden and cruel cutting short of a successful career I truly loved. But with time to reflect and listening to others I have come to realize and recognize that there are truly positive reasons and purpose to still look forward to living on in whatever shape it takes.

Best wishes to all PD Warriors and their primary carers.
Never surrender, there is also hope.

Andy

(The Australian living out my time in blissful happiness in Mexico despite my health and disabilities because I have a supportive, understanding, best friend, carer, angel and future wife, Alejandra, and our two dogs and a great medical team.)