Throughout my MS journey, I’ve never dwelled on the ultimate outcome of my progression, what I refer to as the end game. I mean, what’s the point? The end game has been the proverbial crazy relative locked in the attic. You know they’re there, and you know at some point in time there could be a reckoning, but you don’t pay much attention to it because all it does is get you cranked up. Meanwhile, you do what is necessary to keep the progression at bay and prevent that day of reckoning from occurring.
The only concession I have made to my condition, besides diet, apheresis and infusions, is this house we just built, figuring it would be better to be proactive, and create a new space that can accommodate my needs should the worst occur on my terms. In other words move when I can, leaving the emotion out of it, instead of when I have to. That decision may prove fortuitous because my symptoms have definitely progressed to the point where the end game feels closer than ever.
The symptom that first appeared twelve years ago was a subtle foot drop. Slowly but surely, the weakness progressed beyond my foot, consumed my ankle, and slowly made its way up the leg to just below the knee. Walking became increasingly difficult and annoying, but it was manageable, and even though I used a cane liberally, I didn’t need it to get around. For the longest time, the weakness and lack of control hovered in that area, and even though it made maneuvering and doing stuff harder, I didn’t think twice about any physical limitations, and never thought of myself as disabled.
Well, things have changed. Perhaps it was all the work and activity I did to help get this house ready. Maybe it was the move itself. Maybe it was the stress of this entire process, which was significant. Maybe it was a combination everything or perhaps none of this mattered, and it was simply inevitable. Regardless, the symptoms have now consumed the knee, and my foundation is crumbling.
My knee feels like a broken kickstand that is on the verge of falling off. The pin that holds it to the frame is still there, and keeps the bike upright, but barely. It is loose as hell and is constantly on the verge of popping out. My knee literally feels like it is hanging by a thread, and as a result the leg feels like it can snap in half at any time. I wear a knee brace now in addition to the AFO brace, which helps, but all it does is provide a little extra support to prevent the leg from torqueing sideways.
If I don’t plant my foot a certain way every time I step forward, all my body weight lands on the bad leg as the other leg swings through, and the results aren’t good. The knee forcefully snaps back and the leg suddenly becomes inflexible and ramrod straight, which hurts, and my body wants to lurch forward. I literally have to place my hand behind the knee and push to unlock it and get the leg working again. This can happen several times a day if I’m not careful.
Needless to say my balance is worse than ever. I am in danger of falling with each step I take, which is a first for me.
So the nagging thoughts have begun. Is this the beginning of a steady, downward slide? Is my body going to allow me to continue working full time until I planned to retire? How much longer do I have before a walker or the dreaded wheelchair become necessary? What is all this going to do to from a financial perspective? I was supposed to see my neurologist again in January, but moved the appointment up to a week from Monday. I’ve never done that before, but I need to hear what he thinks.
Of course, I know there are no definitive answers. This could be my status quo for years, or I could be in a wheelchair by summer. I have always known what the deal is, but it never became a conscious thought until now. That crazy relative has broken loose from their prison and is rampaging through the house.
I’m resilient and stubborn though. We’ll wrestle for a while, and I have no doubt I will subdue them, stuff them back into the attic, replace the door and padlocks, and focus on more important things that I can control.
At least until the next obvious progression comes along.
MSich Chronicles 
No, there are no definite answers. Let us hope for that status quo. Fingers crossed.
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Toes too 😆
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Whatever helps.
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I understand all your fears which brings about the what if questions but a very possible scenario is your also in an exacerbation. Planning, building and moving into your new home has been so stressful that when the dust settles the body reacts. I always found I got worse within months of stressful situations, even if they weren’t all labeled exacerbations. Maybe a round of steroids might help or just some time of rest The what if it might not be a lasting problem is a much better outlook or at least a hopeful one.
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I am hoping that the period of downtime we just started having unpacked and stored everything will help.
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I just read this then clicked on the like button. It then seemed so highly inappropriate. Your writing is elegant and your words insightful. Thank you.
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I understand. I read a lot of blog posts that aren’t the most uplifting but like them anyway because the writing is so good and it’s my way of supporting the author. Thanks for reading and your support
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Thanks Steve. I felt I did not want to ‘like’ what you have to be going through, although I know that is not the intent of the ‘like’. What I really like…is that I just know that your writing is helping others. Well being and please keep writing. Cheers
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As you have told me, don’t go down that rabbit hole yet. Yay that you moved up the neuro appointment. Maybe he can suggest some stretching/ strengthening ideas for you, or even send you to some physical therapy? Best wishes!!!
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I haven’t and won’t. At least not about the MS unless the day comes where I can’t take care of myself. I might change my tune though if I don’t sell this fucking house soon. Talk about stress! Might blog about that next week
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I am really sorry to hear this Steve. You are always in my thoughts and this saddens me. Stay strong buddy, fingers crossed for at least a halt in the person
progression of symptons.
On a side note, would you please inbox or email your phone #? I’d like to talk to you sometime
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I do know how frustrating this fun illness can be and how it can make you wonder when things are going to get worse. What I can also say is, even though things seem a little dark and gloomy right now, you will get to a better more comfortable place. This illness is NOT going to defeat you and all your stubborn ways! I am not a doctor, but I do think it is safe to say that all the stress with the house and move could be taking it’s tole on you. Stress is a killer and it causes so many awful things to happen to our bodies. Where as the issues you are going through could be contributed to stress and overdoing things, but there has been a change in weather. I don’t know how drastic it has been for you, but I know during the weather changes my body always goes crazy. You have an army of cheerleaders here for you Steve and please know we are all going to keep being a great support team for you!!!
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Thank you Alyssa
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You are more than welcome!! I do hope you know just how amazing you are and how strong you are!!
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I hate to hear it, Steve. But maybe this is just the body telling you it’s time to rest just a bit. This whole process has been physically, mentally, and emotionally straining and, as it is wont to do, it adrenaled (word?) through until the process was complete, and then it just said enough, for now. Like shoveling the snow, you can get through but you’ll have to pay the piper for a bit after. This might be a longer bit, but (hopefully) not that next phase.
My thoughts are with you. Keep us abreast. And sell that house!
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That’s a topic for another blog. Thanks
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I hate this and I totally get it and I wish I could change it….and then there you are, with your wonderful stubborn streak and strength. For what it is worth, I am thinking of you and always in your corner.
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