Sunday, January 28, 2018

Sunday Stroke Survival: Spasticity Update #1

When I saw Dr. Fox. He was my physical therapy doctor at Emory. All I can say positive about the appointment is two things... He never said, "It's the disease process," nor "It's the best it's ever going to be." In due course, I thanked him for this.

He agreed that all the PT in the world wasn't going to fix the spasticity. It would keep the permanent contratures of the tendons and muscles from happening. There is no simple fix for this. I really didn't expect one. Thanks to Dean at Dean's Stroke Musing and a couple other sites, I'm pretty well self educated on this side effect of my strokes. In fact, I've been told as much by several doctors. They simply do not have the time to stay current. I, on the other hand, have nothing but time to spend on research.

He did suggest continuing with the therapy and dry needling. I need the stretching. If it wasn't so awkward, I could do it myself. Alas, as much as I tried over the years, I just can't manipulate my body to get  a good, full extension stretch. These days I can carry about thirty pounds of grocery bags on my affected arm and not have it budge. That's how bad the constant spasticity in my arm has gotten. Even the therapist has got to do dry needling and stripping the muscles down before it will budge. But after all of that, my arm will move like pictured. It only lasts for the extent of the therapy and it's right back into the 45 degree angle. But the pain relief lasts for about 4 or 5 days which is heavenly. The charlie horse spasms which brings me to tears are reduced in frequency also. Should I be happy and grateful with only this?

So what's the next step?

I'm waiting once again for a functional neurosurgeon appointment. I'm back where I was in October. Maddening, isn't it? One step forward and two back. I should be used to this by now, but I'm not. After the appointment, I sat in my car on the verge of tears. It's so frustrating! My appointment time was 4PM in mid town Atlanta so not only did I do battle with the early rush hour traffic getting to my appointment, but now, after an hour with the doctor, it was the mass exodus of workers between their job and home. If you've never driven in a big city at rush hour, picture this. This is interstate driving with a 70mph speed limit. You are in stop and go traffic, and my best speed is 15mph. The sun is setting and all I can see in my rear view mirror is bumper to bumper traffic behind me for miles. In front of me is miles of tail lights. Six to seven lanes of traffic going one-way. It took an hour and a half to go 22 miles! The only good thing about it was I could take my eyes off the road and sip on my diet cola whenever I wanted. My cup holder is down between the front seats of my minivan. My right arm doesn't function to even hold the steering wheel while driving.

But I made it home safely. I guess I should've thanked God for that, but I was too upset to even think about it. The tears of frustration rolled down my cheek as I told Mel about the appointment. I'm back in hurry-up-and-wait mode again. Meanwhile, I still haven't heard a peep from  Shepherd's Center about an open spot for me to get in there. It's hard not to be angry or feeling like I'm being jerked around. It's hard not to feel like I'm being dumped on, or others just don't care. I've met a lot of caring folks along this journey. They all want to truly help, they just can't. They don't have the God given wisdom to help me. I know I'm not the only one faced with this dilemma. So should I be satisfied? Is it just my stubbornness? Lord knows, I've prayed long and hard about this. Should I just give up even though that's not my nature. You know, what the old Serenity prayer says...
I have a problem with the first line. No problem with the second line. The key is the third line that's a 50-50 shot with me. Hey, I'm being honest here. I think most of us fall in the same boat. At times the Wisdom is written in black and white. You've had a stroke and you are paralyzed. You work hard to recover what you can, and make adaptions to your lifestyle. Or, like me now, when I recovered so much only to lose it again to spasticity. So Courage isn't an issue in that respect. I'll try to do something half a dozen times before looking for an easier way or calling for help. In my mind, there's got to be a solution until God gives the notion that there isn't a way to do it. That's the kicker for me with the third line.  The wisdom is not always forth coming in a timely manner. At least to me. Remember me, I gotta have it now to be happy. I've gotten better about patience since my strokes, but I still have a long way to go. That's why I am in the questioning mode. Sometimes, God has to literally knock me in the head, "Hey child, I'm talking to you!" But that isn't always the case.
Everything I've read about spasticity says there is no cure. They also use the quantifiers like this may be helpful, moderately successful treatments, and research is ongoing. So the situation is not exactly hopeless, BUT there is no cure right now. And, I want it right now! I want it now before I regress to no recovery at all like I was just after my stroke. I want it before I'm back in a wheelchair. I want it now so the cycle of pain stops. It's a cruel punishment to give you back use, and then take it away due to a side effects of a stroke.

Do I sound whinny here? I'm in that cycle of grief again, where I'm angry most of the time. As I said before, grief never truly goes away. I realize the cause is just frustration. It will drive me nuts if I let it. Okay, then I have a choice to make. Do I want to drive myself nuts? No, not really. The people in my head know my quirks, but most other real people don't. I really don't want to step off that ledge. Okay then, what can I do about the problem? Well, the first thing is to step away from the ledge and decide to live beyond the frustrating bits. Sure they'll be back in the forefront again, but for right now, step away from the ledge. Whew! That was a close one. 

Now, take one step in the opposite direction. It doesn't have to be a huge one. Baby steps faltering as they may be. I've decided not to live in frustration. I'm going to take another step from the ledge. How do I do that? Distraction works. Firewood needs to come onto the porch. Now, it needs to be stacked. A load of wood needs to come in by the stove carrying two pieces at a time. Wow, two hours has passed since I took that baby step from the ledge. I sure don't want to freeze to death while walking away from the ledge into nutsville. Oh, there's that sweater I started knitting for Mel's birthday. The chickens and rabbits need to be fed. There's a new movie on Netflixs I wanted to see. Before you know it, the day has passed. I've been so busy living my life the frustration wasn't given a second thought. It doesn't mean that a new or continuing frustration point won't hit me square in the face tomorrow. It probably will. Remember, Murphy's Law is always waiting around the corner. But I survived the day and more than that, I was productive. 
Tomorrow will never come because tomorrow will become today when you wake. All's you have to do is survive the day. One day at a time. Each day, you make a conscience choice to step away from the ledge until you don't have to. With all frustration and grief, it begins to resolve with a conscience choice.

Nothing is impossible.

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