[Andy C]

Hi everyone

This how my meds are stored, we have 31 6-compartment daily pill boxes with each compartment marked with time as I have to take meds 5-6 times a day (8am, 12pm 3pm 6pm 8pm & 10pm) and every round is different ranging from 3 to 15 tablets, in total 57 tablets per day for PD, Diabetes 2, osteoporosis / osteoarthritis.

My wife does all the ordering stocking and filling pill boxes, god bless my angel, so I only have to take them on time. But as time has moved on so to speak, my memory of time to take my meds is becoming hit and miss. So i cause myself alot of down or off periods during a day which is not fun so neurologist and wife are insisting I get a rogitine apomorphine subdermal pump subdermal to at least try avoid the ups and downs and reduce daily pill intake.

I am Young Onset PD, first diagnosed at 39 but ignored /denied it and was tested again at 49 and confirmed at late stage 2 and now at 53 going on 54, I am mid stage 4 with the beginning of dementia and associated confusion and anxiety so I have to  stay home all day, no going out alone and follow a regular schedule of activities per day, all written and clearly displayed in all rooms.

My full pill boxes are stored on bookshelves next to my desk and computer where I start my day then after first round they go in my pocket until I finish for day and put the empty pill box in restocking container which is then managed by Alejandra.

It getting tougher everyday to remember to take and more problematic to swallow so many pills.  And being home I don’t really carry my mobile phone with me most of the time so alarms don’t help much. So that’s my/ our way of storing and managing my medication. Restocking and storing is perfect, taking is the opposite. Cheers Andy

[Andy C]

My first diagnosis was in 2009 age 39, but I refused to accept and denied I had PD.

I was working for a dutch company on a project in Mexico when I was diagnosed for second time in march 2019 aged 49. I voluntarily informed them of my situation and with weeks they forced me into mandatory two year medical leave on an 80% reduction in take home pay and mandatory monitoring and assessment by government health authority. at the end of two years I was declared permanently disabled and incapable of any form of work and this forced into early retirement due to permanently disabled and incapacitated at age 51, totally unprepared and mentally not ready. It was law and the ruling was with my home country Australia and this caused same situation so now after 5year of legal wrangling and no income I have been forced to apply for early pension payout from Australia because I can’t touch my 4 dutch pensions until I am 55&1 day so October 2024. So I didn’t choose to retire but rather was forced to retire and it has had a catastrophic affect on me. I am only recently becoming myself again.

[Andy C]

I have just bought a treadmill and I do 30 mins morning and afternoon albeit on the lowest program which I will do for 14 days and then move up a level. I use it 6 days a week. And I do feel better for it for about 2-3 hrs and the my midday meds kick in and I am like a complete cripple until I have taken my 2pm and 4pm meds all med times contain either 1/2 – 2 levadopa cardidopa 250mg/25mg tablets. I mentioned to my MS Neuro and he said give more time from couch spud to inspired movement beginner. I also do four low impact strecth and flex programs from fitbit for an hour in morning before riding. For once I am glad of my rotten sleep (max 2 cycles a night even with 2*2mg Clonazepam and 2 Quetiapine tablets.so now instead of ghosting the apartment or watching the TV I stretch and exercise. My wife is buying me an elliptical bike for Christmas so I will replace one treadmill session with a bike experience.   I do get sort of a glow and definitely a sense of achievement which is always helps lift spirits. I am 52 diagnosed when I was mid 30’s and now stage 4 and want to see if I can get back to stage one motor skills, as for non-motor they just suck but such is a YOPD life. Sorry if I ramble, I tend to lose track of what I have dictated and Microsoft does the rest. Take care and keep moving forward Fellow PD Warriors – Andy

[Andy C]

<p style=”text-align: center;”>Being active enough to participate in all the festive fun activities and the anxiety of the nasty symptoms occurring is frequent bathroom breaks, dribbling and constant runny nose, and  speech problems  mainly.</p>
 

[Andy C]

I have the pleasure of low pressure high frquenxy of roughly every 2 or so hours. Tried many medications but alas nothing really worked. Now i am on low fluid diet of total intake of fluids including from foods like fruit and veg of 1.5 liters and nothimg after my mouthful with evening meds at 8pm but still getting up every 2 hours at night and aboit every 4 hrs during. Thanks Mr Parkinson’s really appreciate all the wonderful changes you have forced on me.

[Andy C]

I my name is Andy Crow,52, Australian living in Mexico City for last 4 yr and planning to retire here.

[Andy C]

G’day Scott and all the other Parkinson’s Warriors in this string

I have been using Neupro 8 mg patches for about 6 months and i shower sometimes multiple times a day, have swum in swimming pools and in the surf and been tropical/humid environments and dry/cold environments. To avoid the risk of the patch coming off, not likely in the shower unless not applied firmly, I tape it on with strong waterproof tape or get one of those waterproof cover seal patches to put over it to keep it dry and on.
You are fortunate you are being advised patches and a reduction in levodopa i have gone other way doubled the levodopa/carbidopa 250/25 mg and now looking at 16 mg patches and doing an apomorphine test on the 21st of this month to assess to either increasing oral/patch meds or having a dopamine pump. All because my off days come more frequently, last longer, are more severe, and take longer to recover from. So for my own sanity and that of my wonderful fiancee, who is also my primary caregiver who still works 12 hrs a day 5 days a week and to relieve the concerns and frustration of brilliant MS Neurologist we all know we have to do something rather severe and soon.
I have had no problems with the patches as long I place them on air dry, wrinkle free skin like outer edge of shoulder and top of thigh. I find it also helps if you shave those areas occasionally as the patches seem to stick better. Also when you remove the patch rubbing some tea tree oil or eucalyptus oil on the place where the patch was removes any residual adhesive and helps avoid any irritation, reactions or itchiness that may occur during or after you remove the patch. And don’t forget to rotate around 4 or 5 different places on your body every morning when you apply, repetitive placements on the same place for multiple days can cause some really nasty irritations.

Good luck with the Neupro Patches and I really hope they do the trick for you. Best Wishes Andy

[Andy C]

<p style=”text-align: left;”>Hi guy i have been on 8mg patches for 4  month and 4 levodopa/carbidopa 250mg/25mg and 5mg of clonazepam a day and yep all have diverse side effects but if i miss any part the day can go bad very quickly especially if I forget or run out of patch i know it will be a difficult day.  We are now looking at either more ad stronger patches or a levodopa pump similar to insulin  pump.  Side effects are almost a symptom by themselves with parkinsons ad different med regimes we all have.  I will only say this tell the doctor about the side effects but don’t stop or change  meds without discussion with you neurologist – good  luck Andy</p>

[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.)

 

[Andy C]

Mark
i feel the same in mexico. Apply to so many in usa even offering to pay my own way and never get a reply – Andy (australian) living in Mexico City since 2017 (diagnosed same year aged 48 and now retired on disability at stage 4).
Keep trying you never know with medical research it can happen anywhere.
Good luck and take care Andy