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Slow Stroke Recovery is Discouraging
My goal in creating this blog is to encourage stroke survivors along with their family and caregivers in their recovery process. We’ve had many successes along the way, but I feel it would not be fair of me to tell you only of the positive things that have happened and not to share all the struggles we’ve encountered also.
It’s been 14 months since Steve’s stroke in Feb. 2008, and lately the setbacks have been discouraging, especially for Steve. Physically he has regressed about 10 months. It feels like we’re right back where we were when he got out of the nursing home.
The biggest hurdle is Steve’s shortness of breath that is caused by left side hemiparesis (weakness) and lack of use resulting in compression of the left ribcage against his lungs. Sometimes he feels like he’s suffocating as if an elephant were sitting on his chest. Just walking a few steps renders him out of breath. He’ll be seeing a pulmonary specialist in May to see if something more can be done to get relief.
A contributing factor to the shortness of breath is the atrial fibrillation. Steve’s heart races so fast that it leaves him breathless. It causes anxiety which in turn increases his blood pressure, which has been around 180/100. This puts him at a ten times greater risk for another stroke. He’s trying different meds, but we haven’t found one that works well for him yet.
Another major setback has been pain in his right shoulder pain. This is his strong arm and he uses it for everything. It’s been so painful (even after the cortisone injection) that he needs help getting out of bed, lifting his leg into the car, and getting up out of a chair. The difficulty level in moving is like it was when he came home from the nursing home last June 2008. Then it was because of weakness, now it’s because of pain. X-rays show that the AC joint is being impinged by the tendon causing inflammation. The shoulder is being over-used when Steve pulls himself out of a sitting or lying position, and for a lot of weight-bearing on the cane when he walks. As a result, it is being pushed out of place causing the impingement on the joint.
Three full-blown seizures (along with one that was thwarted) have appeared to cause some electrical damage to his brain. His motivation and ambition to get better is gone. He doesn’t want to try to get better any more. With his hope and desire gone, he has just given up and depression has set in. Doing only a few minutes of any kind of arm or leg exercises leaves him with a headache and extremely tired. So I do most of the work for him in moving his arm and leg.
He started the lowest dose of an anti-seizure med (Keppra) about 3 wks. ago. No seizures since, but the side effects are dizziness and fatigue. The second seizure came 6 wks. after the first. The third (thwarted) came 4 wks. later, and the fourth came 3 wks. later. So they were getting closer together. Now it’s been 4 wks. since the last one, so we’re hopeful that the Keppra is working even at this lower dose. The doctor would like to get him up to 1000 mg. a day from the 250 mg. he’s taking right now, but the side effects concern us. I’d like to see how well he does on this dose before increasing it. He just started taking Epi-Still, a natural remedy to prevent seizures found at Native Remedies. Time will tell how well this works. Hopefully we won’t have to increase the Keppra.
Steve feels that the seizures have affected his walking. When he stands, he feels dizzy, unstable, shaky and out of breath. He can’t trust his left leg to bear weight on it because the knee has buckled a number of times, and he’s had to catch himself to prevent a fall. Thank God he hasn’t fallen yet, but we’ve had a few close calls.
We have seen so many different doctors and therapists, and all the running around is getting tiring. We’re not getting any clear-cut answers and that’s the most frustrating thing. It’s very hard to be optimistic when you’re in a lot of pain, and Steve is struggling with depression and hopelessness.
Through all of this I try to remain hopeful. Sometimes it is hard for a caregiver to keep a positive attitude when your loved one just wants to give up and die. All we can do is love them with gentleness and compassion, and let them know that we’ll be there for them. With warmer weather on the way Steve may get an emotional boost because he loves the outdoors. I’m continuing to pray for his healing and encouragement, and I would so appreciate your prayers also.
Kathy