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There is a moment, if you are a PSP patient transitioning to a wheelchair, when you look down at your legs and realise that a conversation is overdue.
They were good legs. Excellent legs, albeit a bit too white. They took me around the world, up staircases and down airport terminals designed by people who appeared to hold travellers in quiet contempt. Before PSP arrived uninvited, I trained them properly. I walked, then ran, then moved on to regular 5Ks and eventually a 10K that I am still quietly proud of, although one of my children insists it was more of a fast walk.
Then came the decline. First the walker, which eventually became more dangerous than helpful, and finally the wheelchair that is now home. From 10K to stationary was not the retirement plan I had in mind.
Moving from an upright, mobile life to one centred around a wheelchair, an armchair and a bed, while enjoying what I can only describe as enthusiastic catering focused primarily on not choking, has predictable consequences. My legs are not wasting away. If anything, they are enjoying retirement. Feet up. Snacks available. Absolutely no complaints about the schedule.
Everything else, however, is furious.
The stiffness arrived first, followed by the pain. Then the knees began to object, loudly and persistently. By evening, the sensation is often that my legs have been replaced overnight by two pieces of particularly uncooperative furniture.
I noticed this gradually and then all at once. I read. I asked my physiotherapist. The explanation turned out to be both entirely logical and enormously annoying.
So let me save you the midnight reading spiral.
What Is Actually Going On
When you stop walking and standing, your muscles stop doing what they are designed to do. They no longer contract rhythmically, pump blood effectively or maintain their length under regular load. Without that constant use, muscles shorten and connective tissue tightens. Hamstrings begin to feel like guitar strings tuned three keys too high by lunchtime. It is not a relaxing sensation.
Joints stiffen as well. Knees are not designed to spend most of the day bent at ninety degrees. They rely on movement to circulate synovial fluid and maintain comfort. Remove that movement and they respond by protesting, sometimes with considerable enthusiasm. Mine have been protesting at considerable volume.
Circulation slows. Blood pools in the lower legs. Swelling follows, along with a heavy, uncooperative ache that by evening feels entirely personal.
And then there is the weight. When daily life becomes chair-based, caloric expenditure drops sharply. Appetite, displaying magnificent indifference to this change in circumstances, continues as before. Nobody is enjoying this arrangement. The legs are carrying more than they used to while doing less than they used to, which is the worst possible combination. The knees, bearing the brunt of it, have made their feelings abundantly clear. It is not an improvement.
For people with PSP there is an additional complication. PSP disrupts the signals the brain sends to the muscles. Even when movement is attempted, instructions arrive weakened, delayed or incomplete. The mechanical consequences of inactivity are therefore layered on top of a neurological disease that reduces the margin for error even further.
Two problems for the price of one. Tremendous value.
Why the Pain and Stiffness Are Not Something to Just Accept
There is a temptation, when managing a serious illness, to divide symptoms into those worth addressing and those that must simply be endured. The stiffness and knee pain do not belong in the latter category. They are real, they are manageable, and accepting them without resistance is not necessary.
Stiff, painful legs complicate transfers and make caregiving harder. They interfere with sleep, because legs that are contracted and aching at night are not conducive to rest. They erode mood quietly and then heavily. And unaddressed stiffness does not plateau. It worsens.
It is worth fighting. I am fighting it daily.
What the Fight Actually Looks Like
I want to be honest here. Much of what follows is new to me. I have been researching this as I go, talking to my physiotherapist, and piecing together a programme that is still very much work in progress. I am not an expert. I am a patient who has decided that ignorance is not a strategy.
I have practised yoga for five years, and that at least is familiar ground. The wheelchair has not ended that relationship. It has intensified it. Sessions are now longer, more focused on the legs, and more dependent on my carer working alongside me to achieve what I cannot manage independently. My carer has, without formally applying for the role, become an extremely competent assistant physiotherapist. I have not yet found a way to thank him adequately for this, partly because he would find it embarrassing and partly because I need him back tomorrow.
A static exercise bike has recently joined the programme. The legs need rotation and resistance, something that approximates the movement they used to get for free simply by existing in the world. I should add a caution here that I have learned the hard way: long sessions are not an option. PSP has a particular talent for turning exercise from something energising into something that powers you down completely, and the line between enough and too much is closer than it used to be. Short sessions, carefully judged, supervised throughout. The balance between doing enough and doing too much is itself part of the work.
Physiotherapy, I have learned, is essential and does not stop when you get the wheelchair. A physiotherapist who understands neurological disease works with where you are, not where you used to be. For PSP the evidence is limited but consistent: targeted exercise can help manage stiffness and may slow functional decline, even though it does not alter the disease itself. The goal is not recovery. It is not losing ground faster than necessary. I will take that deal.
From my reading, what helps most includes assisted stretching, passive range-of-motion work to prevent further tightening of connective tissue, and regular changes in position. Massage helps. Heat before exercise and cold for swelling are both apparently worth trying, and I intend to. Elevating the legs improves circulation and comfort. A standing frame, if safe, provides the loading and unloading the knees were designed for. I use mine, though balance remains a significant issue. I regard each session as a small daily argument with gravity, which I intend to keep having.
Pressure relief, I have also discovered, is not only about skin protection. Shifting weight every fifteen to twenty minutes, leaning forward, leaning sideways, asking your carer to adjust your position regularly. Static sitting, it turns out, is the enemy of everything else we are trying to achieve. I wish someone had told me sooner.
The Part That Is Not in the Medical Literature
There is a particular indignity to having legs that are stiff and heavy and painful and won’t cooperate with any plan involving effort, while simultaneously being entirely comfortable in their retirement and showing no inclination to return from it. They are, in short, enjoying themselves at my expense.
The temptation is to leave them to it. The day is already full. The exercises have been done. The legs are already complaining. Surely they can complain quietly and be left in peace.
They cannot. Or rather, they can, but tomorrow they will be considerably worse.
So I do the yoga. I do the physiotherapy. I ride the bike, briefly and carefully. I submit to treatments that look deeply uncomfortable and frequently are. And then I sit in my wheelchair with legs that are, comparatively speaking, half decent.
Half decent is the goal. Half decent is a win.
I have learned to count my wins carefully. I have become, in fact, an excellent accountant of small victories.
Half decent legs that could have been considerably worse? That goes in the win column. I am writing it down right now.
