MY TRIKE REHAB STORY
I dedicate this story to all the amazing people who supported me along the way. Firstly the dedicated team of Doctors, Nurses, Social workers, OT’s, Physio’s at the PA hospital who patched me up enough to be able go home; & secondly, the family & friends (you know who you are!) who supported me & the kids once I got there. Including Pastor Jake, the Junction Park School community & their awesome school chaplain. No to forget Greenspeed trikes. This story is also yours.
I will endeavour to explain my Trike rehab story in plain English, as I do not speak Therapese. Every disability is different, but the stages I went through will probably be common to all. I will need to give some personal details fully illustrate the wide range of benefits my trike gave me & to put my journey in context. I hope by doing so readers will realize the potential of this new technology for the disabled.
FLOYD & FAMILY JUST OUT OF REHAB 2010 BACKGROUND
(Imagine violin music now) In 2010, I was in my early 40’s & a non smoker & social drinker. I was a few kilos overweight & had been on blood pressure medication for a few years. I worked long, stressful hours in my moderately successful small business. At that stage I had been married for over 20 years, & had 5 children ranging from ages 20 yrs down to 6 yrs. Sadly,my then-wife had some kind of mental breakdown & went on ‘holiday’ with my with the 2 youngest kids to visit her family in the UK. After arriving in the UK, she informed me that she had no intention of returning. When notified of this, I immediately put my business in ‘caretaker mode’ in order to get my personal life in order & focus my energies on fighting for the children’s return. This was an unbelievably stressful time, but after 3 months I succeeded in getting the little ones back home. Shortly after this my business ‘caretakers’ took advantage of the situation & stole my entire client base (i.e. business) from me. My passive income stream dried up overnight & I frantically swung into action working 70 hours per week to try & save my business. A few weeks working at this level of intensity took their toll, & one Sunday at the office by myself I nearly fainted. I realised stress was crushing me & that this was probably a Blood Pressure warning sign. But self employed people don’t get sick leave & I had no time to take holidays or go to a Doctor. My ‘treatment plan’ was to allow myself the luxury of taking next Friday night off & take in a movie. (‘The Expendables’). At 10 am the next morning, I had a right side ischemic stroke & was paralyzed down the entire left side of my body & had memory & concentration problems (or so they tell me, lol). I blame the bad acting & Mickey Rourke’s facelift. Never watch The Expendables'(end violins)
My adult children unflinchingly took on the parenting role of the 2 youngest ones for the 5 months I was in hospital (school lunches & stuff, stuff, bills, rent, meals etc)
It was a very stressful time for all, but family, friends & community support was amazing (thank you Junction Park Primary School & their chaplain!).
The left hand (dominant) side of my body was paralyzed. My hand was totally immobile -‘like a block -o-wood ‘- as I used to say. My leg was floppy & I was confined to a wheelchair. But the main reason I was eventually deemed TPD was not actually the actual physical deficits, but the mental ones; namely-
- short term memory loss
- inability to concentrate, easily confused/distressed.
- left side inattention, poor balance
- -pathological fatigue, frustration meltdowns.
- -extreme sensitivity to noise
- -balance problems.
I was in a wheelchair for several months in the P A hospital’s GARU ward. The Rehab team moved me on to a walking stick. After about 5 months I eventually graduated from the rehab ward with the walking stick, which everyone, including me, assumed that I would need for life. Possibilities of me doing any aerobic exercise were never mentioned to me as an inpatient or an outpatient. Swimming was the only option therapists seemed to offer anybody, & I guess they knew that my deficits’ precluded it anyway. After I got discharged I DID eventually try swimming, it was pretty funny, as I would always veer left, cut across everyone’s lanes & bump the into the sides of the pool.(If only they made circular or L shaped public pools!)
Back at home, the noise & activity of family life left me kind of going about my day in a bit of a cranky, zombie-like state. The doctors told me I had a very high chance of getting depression. I can understand why, especially given my pre-stroke soap opera dramas. The way I saw it, my new ‘career’ had to learn how to cope as Mr Mom to 2 youngsters.
POST -DISCHARGE LIFESTYLE
I usually had a brief burst of energy for 1 hour in the mornings, and then it was all downhill from there. I thought it wise to let my driving licence expire, & get rid of my car. I got taxi’s everywhere. (Either the ‘family & friends’ taxi service or Yellow cab.)
If I went out anywhere I would often have to have a power nap at odd times & public places. I could sleep anytime & anywhere, like a cat. My kids dreaded this however (e.g. once I was napping at a convenient bus top & a concerned lady asked them if their daddy was drunk. I explained in my slow ‘tired’ speech mode that I was a stroke victim; she offered to call an ambulance. Another time I yelled at a poor taxi driver who got lost)
A powernap would only recharge my batteries for maybe another 45 minutes or so. I also found conversing in public places totally exhausting. Different environments would get me confused .I coped best by adhering to a strict daily routine. I learned that if I wore earplugs it filtered out the background noise clutter & doubled my endurance time. I go nowhere without earplugs. They are like a wheelchair for my brain. I do hope to wean myself of earplugs one day if possible. As the day wears on, fatigue sets in, my speech gets lazier & a bit slurred & I begin to blink a lot. The blinking is a survival strategy. Why? Well, it actually started off as an involuntary wink on my affected eye due to watering, & after a few embarrassing encounters & I decided that it was safer to cultivate a blinking habit instead. This is because interacting with people while winking could get me in trouble. (e.g. ‘excuse me sir, can you direct me to the nearest public toilets?” wink.)
I am a ‘spoonie’ (ref- ‘spoon theory’).If I do not manage my fatigue well, I get over- tired & very confused & have ‘meltdowns’. (‘meltdown’ = toddler tantrum for grownups).This stuff frightens the kids as I would roar & break things. So I had to learn ‘spoon theory’. (Ref-link)
I had to learn to set firm boundaries to forward-plan my spoon expenditure to thus avoid meltdowns. So for example, if a visitor happened to pop over before the kids were due home from school, I could not afford to waste my 2 remaining spoons on them & run the risk of a meltdown on the after school shift, so I would politely tell them to leave & hibernate in my room & not answer the door to anyone.
My mum bought me a second- hand ‘upright’ trike when I got out of hospital, because my blood pressure was still high & I was getting fat. It gave me a tiny taste of freedom but was not ideal. It was very difficult for me to mount, & the saddle seat cut into my butt after about 10 minutes. Plus their high centre of gravity made them dangerously unstable. I was Goggling for a solution to this problem when I discovered an odd contraption called a ‘recumbent’ tricycle’. (Note-’Recumbent’ is an expensive word for ‘reclining’). I did not like the idea of buying one from America & found an Australian manufacturer called ‘Greenspeed’. They are a pioneer in the recumbent trike field & according to everyone on the internet, had a reputation for quality & excellent engineering. Sadly, no bike shops stocked these trikes on the showroom floor, so a test ride was out of the question. But I took an $1800 risk & bought it anyway, sight unseen. See-I told you it was an expensive word. (Note to self-no more internet shopping after wine o’clock PM!)
RECUMBENT TRIKE JOURNEY
It arrived from Melbourne in a box, so I sent it to a bike shop for assembly. But not any old bike shop. Greenspeed referred me to a rare bike mechanic that had some experience in assembling them.
A few days after assembly began, the bike mechanic rang up to ask, ‘how long would you like the chain?’This governs pedal distance which is dependent on your leg length. I had no idea, so my long suffering mum drove me into the shop to sit in the seat & get the pedal length right.
Until that moment, I did not even know if I had wasted my (by this stage) $2000 or not.Would actually be able to egress & ingress from the thing? Fortunately, I managed ok. It was just like sitting in a beach chair.
STAGE 1- -learning to ride the machine in a quiet street & fine tuning/adjustments
Anyway, once I got it home, I quickly mastered the egress & ingress part & then I was ready to learn how to actually ride it. Recumbent Trike’s are fairly low to the ground & thus very stable. At low speed, it is almost impossible to tip one over or fall out of the seat. So this took the ‘balance’ problem out of the equation, which meant that I was able to concentrate on learning the gears, brakes & pedalling etc. Fortunately, the pedals already had foot straps (which foiled my left leg clonus attempts to kicking It off the pedal mid stroke).As I rode further my muscles fatigued & my leg flopped about. My adductor muscle was strained, but eventually I taped a shoe onto the left pedal and a tennis ball to the frame where my knee was hitting. I did this in a quiet dead end street.
After a while my leg/glute stability returned & I was able to remove all that stuff & ride like a normal person.
STAGE 2-(2013?) Therapeutic rides- therapy oriented rides targeting specific deficits & cycling techniques.
Once I felt confident I could control the machine, I went for daily rides around the block (via footpath).I discovered that my affected (left leg) quads had very little strength & that I was basically pedalling with one leg. When I tried to use left leg, it was laterally unstable & the knee would flop about at each pedal stroke. My knee would glance off the left hand ‘accessory pillar’ unless tightly policed by my adductor. This was a short term fix, as the adductor it got so overworked & painful that I got an expensive remedial massage to help it at No More Knots. I also taped half a rubber ball on the pillar for padding.
Both lefty leg & arm were lazy impostors. I was actually only pedalling with one leg & braking/steering with one arm. This was unfair; the righty’s did all the work while lefty’s seemed to get all the glory. My first goal was to fix this injustice.
I developed a protocol that I used to target every deficit that my riding uncovered. It began by going for certain rides that had ‘rules’. So only lefty was allowed to pedal & righty got to be the lazy passenger for a change. At first short rides, then gradually longer. These rides were all about technique & strength. I guess you would call them ‘Therapeutic rides’. At first each left pedal stroke had to be consciously initiated, but after a few weeks they became automatic.
I accidentally discovered that by consciously recruiting my gluteus to initiate each pedal stroke, it stabilized the knee & took the load off my poor overworked adductor. The rubber ball came off after about 18 mths I think. Lefty hand also had a very similar journey. Amateur self therapy stuff was involved in learning how to steer, change gears, and operate brakes & the bell with only 1.5 hands. The first problem was to keep lefty hand gripping onto the handgrips without any conscious thought. The second was convincing him to leave some fingers on the handgrip while extending a few outwards to work the left side hand brake. For the first few weeks, it felt like my fingers were doing the splits. After a while responsibility for braking was given to my left hand for certain rides, (with the right hand brake acting as backup.) I had to try & squeeze the handbrake without any wrist flexion. (I remembered that this was a no-no from my OT in rehab.) This improved my Left hand function & strength, & I noticed that I unconsciously began using him more at home. But then, after a while, I got stiffness problems in my left side neck & shoulder. I realised that in trying to get lefty helping with steering, he was cheating. I was locking my entire left arm & shoulders & steering by twisting my torso, causing very stiff neck & shoulders on the left side. I had to learn to grip the handlebars properly & bend my elbow, & recruit the shoulder blade of my sleepy arm. (I remember my OT saying that it had bad ‘winging’ in hospital.) This in turn caused nasty muscle tightness in my neck, for which I got the odd massage.
I HAD DITCHED MY OUTPATIENT THERAPY BECAUSE IT WAS BORING & IRRELEVANT. I WAS DOING BETTER BY MYSELF WITH THE TRIKE.IT IS A PITY A THERAPIST WAS NOT INVOLVED.
STAGE 2 – (2013) short rides. / School runs
Then things began to snowball from here.
It all started when my youngest daughter said she would really like me to accompany her to the school bus stop in the mornings. Foolishly I agreed. This opened a can of worms.
My pathological fatigue problem plays havoc with a normal sleep routine, & normally wild horses could not drag me out of bed in the mornings. This in turn makes it very difficult to be a single parent. But I found it hard to say no to the princess, particularly after what she had been through.
But once the school run gig started, I could not stop it. I did not need an expensive personal trainer to yell at me, as I had a rather bossy daughter instead! This ‘morning school run’ basically forced me into keeping a normal sleep routine; I HAD to get up early; with a smile, no excuses. One thing led to another & this led to me cooking everybody breakfast, which in turn led to me having to clean the bloody kitchen. But it got worse. She then expected me to do the afternoon school run as well! Fortunately the bus stop was near a coffee shop, which probably saved my life. I became a morning regular at the coffee shop & felt a bit like a normal person. This led to my whole day being organised into a Mr Mom routine. Cooking afternoon tea & dinner was sandwiched in between school runs, with a power nap whenever I could fit it in.
STAGE 3- exercise rides
Once the therapeutic rides & school runs had improved my technique, something happened that I never dreamed of. I gradually gained enough muscle strength & endurance to work up an actual aerobic sweat! I could actually do real; proper EXERCISE.I could find a hill & challenge myself & get an actual aerobic high. I LOVED it. Unbelievably, the more puffed out I got on my rides the LESS I found the need to nap. I became more mentally alert all round. People could actually tell how much I had been riding by my moods. I guess the blood flow must have oxygenated my brain or something. I also noticed that I seemed to be using my walking stick less & sometimes leaving it at home when I went out.
STAGE 4-day trips.
After I was in a routine, I would sometimes shake things up a bit & have an adventure. Normally on a Saturday. I would stock up with water & lunch, & ride to Southbank & explore. Have a nap. Have coffee & ride home. I live at Holland Park so this was an hour long (12 km) trip each way, via the SE bikeway. It was like a Sunday driving. The seat is very comfortable-like sitting in a deck chair, so there was no saddle sore issue at all. I accepted the risk that my concentration deficits could cause me to crash one day, but I am highly vigilant & wear earplugs in to muffle background noises to minimise this risk of distraction. I reconnoitre my routes in advance with a dry run first, then stick to them.
Around this time I lost my favourite pimped-out walking stick. I didn’t bother replacing it, BUT I keep the spare one strapped to my trike for emergencies, & as a force shield against the power of shopping centre security guards (yes, I ride indoors). Plus I can I park in disabled bays.
By this time I had been a triker for about 5 years. The benefits were many & varied –
1/ physical .I stopped putting on weight. I could get a cardio ‘high’, plus muscle strengthening, no more walking sticks.
2/mental (less fatigue &more endurance) turn sleeps into long rests (reading etc).
3/emotional. (Moods, happy. Freedom & independence)
One thing I left out of the stages is my ‘2 steps forward & 1 step back’ along the way due to injuries (& sometimes mechanical breakdowns).These injuries were because a combination of bad biomechanics, lack of therapeutic maintenance & supervision, plus over enthusiasm. This caused me to overdo it physically & injure myself, which caused things to grind to a halt & would put me back a few months. I will recount my personal trike injury story here to give you the heads up on what to expect & what to avoid.
STAGE 5- (2017) assistive rides -groceries/meeting friends/church etc
After a while I found out about a new technology called ‘e-bikes’. Small electric motors could be attached to cycles to help in ‘flattening out the hills’. I was a bit circumspect about this, but I couldn’t help but wonder if it would help or hinder my progress. It all seemed a bit too good to be true. Would I crash? Would it break down every week? Would I get lazy, use the motor too much, & gain weight? Am I just being a spoiled brat wanting a new toy?
Or would it usher in a new era of doing my own grocery shopping like a big boy, & being a social butterfly? At $1700 to retro fit it to my $1800 trike, it was not a flippant decision. So I ran it past oldest daughter, who, like her grandmother, is a notorious tightwad. She said-‘dad, the trikes basically your CAR. It’s your only means of transport-GO FOR IT’. So, in January 2017, with her blessing, I spent the money guilt free. I could never have guessed what would happen next.
There are 101 options with e-motors, (as our e-motor page explains here).The kind of motor I eventually settled upon was called a ‘pedal assist’ type. This gives a bit of a ‘push’ to each of your pedal strokes, according to your choice of power setting. Thus I found that I could tailor every ride to suit my needs. For example, I could pop out for milk or bread if we ran out, no matter how I felt physically. I live on a hill & thus every ride was going to be a sweaty one, wether I felt like it or not. But now I could actually choose to have a hard or easy ride. This flexibility meant that I rode more often. And I could go further. Also, I found that I could sail up hills with a load of groceries! No more taxi’s for me! I almost felt like a normal person again.
I first realized how much of a difference this made in my head when something really odd happened. I noticed that after the e Motor was fitted, whenever I sat in the seat to ride out for an errand that I noticed that as soon as my butt hit the seat, I automatically started patting my right shoulder & left hip. It was very odd! I tried to stop myself, but I got the most powerful urge to do it EVERY TIME I sat in the seat. I had no idea why, until one day, I hopped into a car to get a lift somewhere & I automatically performed the same ritual…was I going mad?…then it hit me..I was doing a seatbelt check! Like when I had driven car! That’s when I realized that my subconscious mind, after 30 years of driving, had began to associate the utility of my trike with that of a motor car! It turns out that the e-motor DID ‘usher in a new era of independence’ for me. I think that elevates the trike into the category of what the boffins would call an ‘Assistive Technology’. I used to get a taxi several times per day. Now I hardly use the TSS once per month, if at all.
Over the years as I advanced through to each stage, & feeling happy with my progress, sometimes I would ask myself,’ why did nobody tell me about all this?’ That’s when I realized that I had to do something to spread the word, & formed this club.
– Injury/physical therapy plan
One aspect of the story I did not mention in the story, but that was always in the background, is injury management.
This is a very important topic that is easy to ignore until it’s too late. Once you are able to pedal far enough to raise a sweat, it will not be long before you need some kind of physical therapy. This is because disability & bad biomechanics go hand in hand. Just like in the early stages of post-injury physio, a small amount of repetition causes small discomfort, as new muscle groups are recruited to compensate etc. But this dynamic is magnified by longer & harder rides &, if ignored, it will cause an injury & stop you riding altogether & put you right back to square 1.
Rehab is all about ignoring discomfort, so it was very hard for me to differentiate between ‘good’ or ‘bad’ pain. Financial constraints were also an issue, (as by this time I was no longer an outpatient & I also had no health cover), so like most disability pensioners, I avoided paying for therapy as long as humanly possible. I would enjoy the fruits of my exercise, Ignore muscle pain until it was acute, & hobble around in pain & then pop in to a shopping centre massage place for low cost, low expertise, short term relief.(aka-‘tickle treatment’)
This kind of approach left me in a constant stop-start, boom & bust cycle during the course of every year. The cycle was as follows-
- feel like a fat lazy zombie
- Force myself to start riding.
- Start feeling fantastic, more alert, less fatigued. I feel a bit bored during the day & start a little project.(I don’t always finish them)
- Ride further & more often for a few weeks. Everyone comments that I’m losing weight.
- A gradual lower back & shoulder stiffening sets in.
- Stiffening advances to constant pain & my riding tapers off. I get a few cheapie massages
- Pain locks me up-painful to walk around the house-all riding stops,
- Pain subsides-go back to 1 & repeat.
If I had been an outpatient I would not have ignored these early warning signs & avoided what happened next.
Enforced breaks from riding would set me back months, & over the years I got sick of it. If it wasn’t injury, it would be bad weather (too hot or too rainy) or mechanical breakdowns. I would lose my fitness, put on weight, and then be in zombie mode again. This meant another big battle with motivation & inertia to get started all over again, This gave me the idea to set up a home gym for the ;off season’. I got a reclining exercise bike & a cross trainer. So if the weather was bad or my was trike in the shop, I could keep up my routine. I figured that the recliner would mirror my trike movements & the cross trainer may help re-train my gait. I’d already gotten rid of my walking stick, so who knows? Apparently it was a bad idea to mix the 2 exercise movements & I overdid it again. Amateur stretching had kept my chronic lower back pain under control since I started the whole riding thing but now my time was up. One morning, the day after an awesome 1 hour session (30 mins on each machine) I could barely walk. The twisting motion of the cross trainer was obviously the last straw & I woke up with a big lump on the site of my regular lower back pain, the posterior iliac crest. I hobbled around the shopping centre trying to get the groceries & got a tickle treatment massage. But I told the guy to go hard on the sore spot. When it was finished & I hobbled out, did a u turn & then went straight back in for a second one. All this bought me about 2 days of temporary relief, & I realised that unless I changed my approach, I may never ride again & go back to zombie mode forever.
Injury & maintenance Team Floyd
I realized that my frugality with physical therapy had been false economy, & now decided that I had to throw money at this problem until it was fixed. I saw every kind of therapist in town. The problem I had was that every therapist had their own idea of the problem & how to treat it. I could not tell who was right or wrong. In the end I figured that they were probably all right, so I ended up approaching it like a business problem in my previous career. I gathered together a team of experts to work together & swap notes. I called them ‘Team Floyd.’ It all started with Kate from No More Knots. I typed up my stroke/trike/ injury back-story & saw Kate, an expert Remedial Massage Therapist (RMT) from No More Knots. After a few sessions, when Kate understood my body more, she recommended that I see a Chiropractor. I took Kate’s advice did exactly what she said & saw Travis from Back2front Chiropractic. I gave him the same copy of my back-story – plus Kate’s email address. I had memory problems so I asked them all to swap notes between themselves directly. So Travis would say to Kate- ”can you work on loosening up his xyz for me ” & they would communicate back & forth in therapese. Travis told me that his treatments will be more effective if the patient is loose, so I always saw him straight after Kate. Then one day, Kate recommended that I see a Muscular Skeletal Specialist (MST) called Paula Nutting. I got Paula in the team & in the info loop. MST’s have more of a ‘big picture’ approach so Paula ended up co-ordinating all the other guys. Things REALLY started humming from there. They all swapped treatment notes & worked as a team. It was a SUCCESS! (Phew)
When I first came to Kate, I had pretty much consigned myself to the idea that my trike riding days were over & I saw each of the therapists weekly, in a bit of a panic. As they gradually produced results, it dropped back to every fortnight, then monthly & now quarterly for maintenance. Now, if I have a drama, I can just pop back in to them & nip it in the bud quickly because they are all very familiar with my unique problems & biomechanics, & have my treatment notes on file. (Btw-I am quite happy to share them with anyone who is interested.)
STAGE 7-better lifestyle
Now I am pretty fit for a disabled old dude & I’m using the trike like a I used to use my car; doing normal things that normal people do like get a load of groceries , meeting folks for lunch or coffee etc. The motor has no problems zipping up my local hilly area (Holland Park West .BNE) under a big load of groceries. Because that doesn’t look weird enough, I got myself a little cargo trailer! I initially feared that the eMotor would make me lazy & unfit because I do not have to work as hard. But ironically it has had the opposite effect. Because I do not have to work as hard, I ride much more often, & go further, than I did before.
I hope this story inspires other disable folks, & therapists to explore trikes. If anyone, therapist or patient has any questions or would like to see my trike, or test ride one, just complete the contact form. Any people who are already trikers can help others by joining the club to help [p build a community. This will provide a way for prospective trikers to communicate with experienced trikers who share similar disabilities.