My life as a 'clubbie'
This is quite detailed for the purpose of specifically describing my club feet journey - so others can relate.
I was born in 1970 in New Zealand with bilateral talipes equinus varus - AKA Club Feet. My right foot was severe - left, mild.
As I can't remember much(!)- here is my Mum's words on the first 5 years:
My quality of life was declining, I was getting so fed up, in more and more pain and becoming less and less mobile – I was not living, just managing to go to work (sit down desk job), anything more I either couldn’t do or I would big time pay for later. A simple pleasant walk was out of the question. I was missing out on so much and my vitality was low. I was on anti inflammatories and pain killers, which in turn gave me stomach problems. (Tried all the natural things too),
Further fusion of the navicular cuneiform joints was suggested but this ran the risk of more stress and pain of the TMT and ankle joints. NO THANKS!! - no more surgery, the recovery was huge and the prospective result not encouraging.
I was also informed that the actual ankle joint was going downhill and would require a complete replacement in the near future!
So my prospects were not good - more and more surgery and possibly heading for a wheelchair, I did not want this life. I then seriously considered amputation., together with my orthapedic specialist, we had it as a viable option....................................................Then I saw a post on my club foot facebook support group, from the awesome Lisa Kramer, she had the ExoSym and her life changing success captivated me.
I then spent 6 months debating whether to go for it - so many questions, so many hurdles, the cost was high - $9k USD (@ $13k NZD) plus travel costs to the USA. Would it work for me? Is it worth it? Surely a mere leg brace can't be such a game changer? and so on.........I spoke at length to 4 people around the world that were at different stages in their ExoSym journey's and ALL of them were extremely positive and encouraging. So, I decided to GO FOR IT!!!
Then we decided to REALLY decided to go for it - Together with my family, we flew 7000 miles from New Zealand on 12 May 2015 - left our jobs, took our 9 yr old son out of school, rented our house and off we went on an adventure!. Away for 6 months - first stop, Gig Harbor to get the ExoSym, then go a walkin! We travelled around USA and Canada. Half of our trip was staying and working on organic farms where we worked in exchange for food and board. (So I have NOT been sitting down on the job!) The other half has been travelling around and hiking the mountains of USA and Canada's National Parks - Totally amazing.
Some background stuff on pain:
PAIN and inflammation pre ExoSym:
VERY LOW activity (just getting by with the essentials):
acute pain: 4/10
chronic pain: 9/10
Higher activity (anything more than above, for eg; small walk):
acute pain: 20/10
chronic pain: 20/10
You get the message! No extras
PAIN and inflammation post ExoSym:
acute pain: 0/10
chronic pain: 0/10
EVERY day since getting it I have been WAY more active, my activity
levels have increased 100 fold
What I have done since getting the device:
* starting with a week of intensive workouts at the Hanger Clinic including – treadmill; walking AND running (!), lifting heavy weights, squatting, shuttle running etc.
* LOTS of hiking (@ 5-6 miles average and sometimes for many days in a row, never could I do this!!!!)
* walking around towns and cities sightseeing.
* hard physical outside work; shovelling wood chips, hauling and dumping heavy rubbish, gardening, house cleaning.
* dancing and walking around music festivals for hours.
* running into the store - these are the little things that are actually HUGE..
* getting up to get things – my husband or son or whoever was around! I always had to ask to do/get things for me.
* outings - we can all park together and walk wherever we are going, instead of dropping me off etc etc.
* ZUMBA - so much fun!!!
* soft sand - walking with ease on the beach - magic
What is totally amazing though about even being ABLE to do all of the above, is that I have been able and willing to get up and do it again EVERY SINGLE DAY because I’m pain and inflammation free.
I am blown away with the result and I know others who have
had it are too. My son and husband are really loving the new
me – it has changed our lives really absolutely and will only
get better as I get fitter and enjoy this long term.
I know and understand that it's expensive - I paid out of pocket with a loan against our home, others have fundraised (see Lisa Kramers blog https://thechroniclesoftinkerton.wordpress.com/), others have got it on medical insurance.
I am not a rash person, I really think about things and weigh them up and am skeptical about alot, esp as Ive had many solutions offered to me throughout my club foot life. This was a researched and well informed decision. I'm trying to make that easier for others by providing all this info, covering alot of the questions I was asking!!
All I can say is - find a way to do it!!! Of course this is after Ryan has evaluated you to be a good candidate.
To me it is worth EVERY CENT, honestly it’s hands down amazing, best money I've ever spent.
To be living pain free and mobile is an incredible gift that I am so grateful for every day.
Legs casted in the 1970's - spent alot of time in this!
Boots and Bars (Thomas Browne Splints) I had to sleep in as a child:
My foot after triple fusion and straightening at age 42:
First walk in the ExoSym - pure JOY!!:
One of my first big hikes a month into having the ExoSym - 6 steep miles - no pain before, during or after - AMAZING!!! (Lake Atlin, BC, Canada, July 2015)