It’s been an interesting few weeks to say the least. A lot has happened, a lot continues to happen on this roller coaster that is adjusting to life as an amputee. The main areas I will cover in todays blog are progress the limb centre, the bike shop, work and fitness.
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The limb centre
As you know, I do a lot of self research, I never enter a situation without some background knowledge. Prosthetic legs is exactly the same. I knew nothing at all about artificial limbs so time to do some reading.
The first leg system I was given was – as expected – basic. As far as I understand, the artificial limb parts advance as you get more proficient at being an amputee. That said, the first (neoprene) limb sleeve (which holds the leg on) was something I never ever got on with. It would wrinkle and roll and cut in. I hated it. I was given a slightly bigger one, but that was even more disastrous, because now the leg was barely held on at all, and literally kept falling off.
Staff holidays (and my refusal to wait a number of weeks for them to return) meant that I got a new prosthetist at around the time I was needing socket number 3. This actually turned out to be rather a blessing. As you can imagine, I ask lots of questions. I have very high expectations, and even higher goals. Yep, my new prosthetist had a lot to get used to when he met me… no I am not like any of the other limb centre visitors (who seem to normally be much older more sedentary patients).
Right from the start I asked could I have a different solution, because I hated this one. He talked me through the other options and explained them to me.
There are two ways to use suction to keep a prosthetic leg in place. One involved putting a one way valve in the bottom of the socket then a gel limb sleeve over the top to create the seal. The other is just suction on its own without the sleeve, but relies on a stable limb size because – shrinkage would cause it to fall off. This is why the second option is not used for new amputees because the side of the residual limb is still changing too much.
Pin lock system
In this version the gel liner that you put on has a pin in the end, and clicks into a slot in the bottom of the socket to hold the leg in place. Because there is no suction involved in this system, just the sleeve and pin, there does tend to be a bit more movement of the limb inside the socket as it is only being held on at the base of the liner with the pin.
The Combo system
I only learned this week that they can combine both of the above, the context of this being a possible way to make a leg multi functional for both bike and walking because the pin lock system means less layers of stuff being worn, aiding the bend of the knee. The proposal was the sleeve and pin lock while walking, and the pin lock only while cycling.
My current leg
My new prosthetist Ryoji changed me to the suction valve system. so, when I put the leg into the socket and pull the liner up, the one way valve releases the air and the suction is created. For me, this makes the leg feel a lot more stable, there is next to no movement inside the socket and the leg actually feels like a extension of me, rather than something that is a strap on attachment, if you understand the subtle differences of both of those.
What this also meant was that from the second I put this particular leg on, I strolled off across the room without crutches and have not needed them at all since. That is how much of a big difference it has made. Understandably I am rather stoked! It has needed angle adjustments since, but that is easy when there are no skin coverings on. Although we have been laughing about the fact that I had to go back to Dunedin to ‘get my ankle adjusted with a spanner’. Some of my clients have said how cool it would be if all your body parts could be adjusted or fixed with a spanner! Like… hey Ryjoi, can you kinda pull in the excess around my middle with your spanner please?! I actually asked him that! His response: I don’t think it works quite like that! What a shame!
We also discussed whether to have the leg as a leg shape or not. Ryoji explained to me that as a new amputee the lighter (and more adjustable) we can make the prosthetic, the better it would be for me. So, back to the post we went. But, as I don’t particularly like that shape we are also adding a limb cover with some extra art work on! It wraps around the post and straps on, a bit like a shield – giving me the shape of a calf and lower leg, so I can still wear leggings. This means I still have the option to hide the leg, or rock this leg, depending how I feel. I decided I did not want it to look leg shaped. Hell, I am proud of the adversity I have overcome and I will wear this thing with pride. The more people that can see that, the better! The limb cover is being hydro dipped and should hopefully be back in a week or so.
The bike shop
I got sick of waiting (hahah!) for such a time when I might be able to get a leg that might allow me to ride – so I went out searching for alternative solutions. After pinching a spin bike from work and sticking both my mountain-bike and racing bike on trainers to try them, I came to the conclusion that the socket is what is restricting my knee bend. The height of the handlebars had almost nothing to do with it. Ryoji said that at this stage, lowering the back of the socket would destabilise the limb and he was not in favour of doing that. So I needed a different solution.
I went to my local bike shop and we had a LONG conversation. We came up with two possible solutions. A pendulum crank, or an adjustable crank. The question was, which one could we physically get hold of (with the whole covid thing affecting imports).
This is what we ended up with. The pendulum crank is more designed for someone who has no use of one limb, so no power goes through that leg. BUT… the pendulum is removable and the remaining piece can take the pedal attachment and can be slid up and down the crank. The idea is to shorten the left side crank, so my knee does not need to bend as far. The mechanic laughed about how weird it would be to have the two sides doing slightly different things. I said – look, have you ANY IDEA how weird it is to walk on a prosthetic? On the grand scheme of weirdness I really don’t think it will rate that highly! So, the mountain-bike is where we will start and I am hoping to go into the shop on Monday and try this thing out. Fingers crossed it works and I can at least start moving in a forward direction on some form of bike!
I was asked at my vascular follow up this week – was my life ‘back to normal’. I knew what they kind of meant but no, my life is not BACK TO NORMAL and it never will be. My life has been irreversibly changed, but, I am trying to make the most of it and get back the things I lost in those months and years leading up to the amputation.
The estuary track is local. It is one of my benchmarks for walking. In the lead up to the amputation I could not even walk to the mail box. I now can. My next goal was the distance on the estuary track. It has more seats and stopping places than any other walking track in town. With two feet, I went from being able to easily walk the 50 min loop multiple times – to not being able to even reach the first bird hide / seat. So, when I walked it at the weekend and strolled straight past the first (and second) seats, I was understandably rather happy indeed. My longer term goal is to keep extending out the distance till I can make it all the way around the loop.
I am even making progress at the pool. When I first went back to swimming, I needed assistance from the staff (getting me a chair for poolside) and used their waterproof wheelchairs. Now I walk in on my own two feet, carrying my crutches, which I only use to get from the seating at the side where I leave the leg, to the steps on the side of the pool to get in.
All these steps, albeit small, are significant in this long road back to life as I used to know it. Or some form of.
As for work, I am gradually working my way back up in hours, and have started to tentatively use the prosthetic for massage rather than removing it and kneeling on the stool. Things are going well, considering I am only 5 months out.
The toughest thing to handle lately has been the news from the medical investigation that proves that the amputation could have been avoided and that a medical error was made. Read about that story here.
This will NOT beat me… but there are still some downs to come, along with the ups.