I have been updating a Caring Bridge website regularly but I try to keep that specific to John and his progress. Here I will insert a little more of my own voice and experience, and also other happenings in our lives.

Wow. Where did the summer go? I feel as though the last time I looked at a calendar, or had any concept of a normal life was June 27th. Somehow, it is now October. John has hit the 90 day mark on his stroke recover road and is doing amazing. When I think of what he could and couldn’t do on June 28th, or even July 18th, when he finally came home, and what he can do now, it is amazing how much he has improved in such a short amount of time. But when I think about our life pre-stroke, if feels like another life time ago.

We have been able to dedicate all of our time and energy to John’s rehabilitation so far and will continue to do so for the near future, but he is focusing on getting back to work and is looking forward to the return of some normalcy on par with his pre-stroke life. He will still have OT/PT/Speech therapies once a week, with rigorous commitment at home. We expect this to continue through next June, at the one year mark. He has also begun 6 weeks of dedicated vision therapy.

I have been saying from the beginning that we are so fortunate because John’s stroke didn’t involve cognitive impairment. Grateful doesn’t feel adequate to describe my thankfulness for this. Physical issues can be managed but cognitive impairment from brain injury is an entirely different animal. He has been largely independent from the time he finally came home – which was 3 weeks to the day from when he was carried out of our front door by two firemen.

The first week or so after he was home, he couldn’t ambulate without a walker, a gait belt, and me hovering right by him in case he lost his balance. Cerebellum strokes result in very unique balance deficits. Literally your body does not know where it is in relation to the physical world. John never experienced any loss of strength or range of motion, but couldn’t even sit up straight, let alone stand up straight due to an almost magnetic pull to the right and inability to know where ”center” is.

This pull to the right and lack of balance showed no signs of improvement for a full 9 weeks. Luckily his walking and general mobility improved greatly during this time, but it was incredibly hard and exhausting as he was always fighting the lack of balance and pull – technically called truncal ataxia. He would tell me he didn’t feel like it had improved even 1% and it caused a lot of worry for both of us. We are so relieved and thankful that this has finally started to improve.

Ironically the first time he noticed improvement was after being in the hospital for another 4 days thanks to an emergency gallbladder removal. It is hard to even talk about this little bump in the road – there was a lot of distress and despair during this brief ordeal. I am happy to report the surgery went great and John recovered fairly quickly. Just a few days after surgery we were back at our local park walking and that was the first time he noticed the pull was not as strong. Praise God. It is still there but improvement is all the encouragement we need to give us hope to keep on keeping on.

Stroke is the strangest thing. Brain function is absolutely fascinating, but I speak for both of us when I say we would prefer to learn this information from a documentary rather than in real life. We have been told that recovery would be a long and slow road. A marathon, not a sprint. At times the progress feels so slow and subtle, that it feels like we are imagining it, but there is no denying that John has made remarkable progress in these first few months. He walks about 2.5 miles most days and jogs for about 1/4 mile of that. His gait mostly looks normal, but at times can still look very robotic and stiff. His right side – his leg in particular will also occasionally just move of its own volition while walking. I believe his right arm and hand will do this as well, but it is harder to notice.

His voice sounds almost normal but he had another scope of his vocal cords and his right vocal cord is still paralyzed. The encouraging news is we were able to see improvement of the left vocal cord compensation. At this point, he continues the his speech therapy vocal exercises and hopes for continued healing. With a fairly normal sounding voice and normal swallowing function, his vocal cord is what stresses him out the least right now. His vision is still a big concern, but is continuing to change and we choose to believe this is a good sign. Because this is the biggest problem for returning to full independence, we have seen two neuro-ophthalmologists and although Occupational Therapy focuses much time and effort on his eyes, we are adding the dedicated vision therapy.

One of the craziest results of his stroke is that he has loss of pain and temperature on one side of his body, but can still feel sensation. The has resulted in a little bit of neuropathy (nerve pain) on that side. As he becomes more mobile and active, the nerves that run down the back of his leg have been causing him a bit of pain. Also, his hair grows in a different pattern on the back of his head. What? It’s true! We both noticed after the stroke that his hair was sticking up at the crown of his head. We just thought it was from being mostly bedridden those first 3 weeks, but when he had his first hair cut the lady who has been cutting his hair for 20 years was completely shocked that his hair is growing different than it did before. How crazy is that?

“They” say that the next 3 months are nearly as important as the first three in the stroke recovery process, and that wherever he is at the one year mark is a good indicator of where he will end up. We hope this is true. Even though it sometimes feel like we can’t see the changes from day to day or week to week, we certainly can look back to the middle of July and see incredible healing and recovery. It allows us to continue to hope for a complete recovery. We hope for a fully functional vocal cord, for two eyes that work together, to feel pain and temperature on both sides, for resolution of the neuropathy, for resolution of the incoordination, for resolution of the balance issue. We hope for all of this while being incredibly grateful for the healing that has already occurred. We also worry. About too many things to list. These scriptures and advice have become a daily mantra for me.

We are both tired. Still in shock and emotionally exhausted by all that has happened and all that is yet to happen. By not knowing how or why the stroke occurred. The data on surviving a stroke is not great. Brain damage shortens life expectancy. Risk of subsequent stroke is high. I used to joke with our financial planner that he had to plan for John to live to 100 (his grandma lived passed 100 and his Dad was 95), and for a 2nd wedding for him, because my gene pool does not have a ton of longevity in it. Now we are seriously considering cashing it all in and living our best life for the short remainder of life we might have left. Before we do anything drastic, we will wait and see what the follow up CT scan in November reveals. It will definitely tell us some things and I will update then, rather than go into detail on either scenario at this point.

When the anxiety is high, I come back to the fact that I truly believe that God knows the number of days we will live, that it is written in His book. I have had to rely on this a lot. It is hard to leave the house, especially in the evening, and not be worried that John is going to have another stroke. I have to remember that none of us are promised tomorrow. Maybe it is me who will not make it home. Maybe John will never have another stroke and will live to be 100. And the not knowing should really be what makes each and every day as beautiful as it can be. But it is hard. And I will keep trying. If I’m being honest, nothing has really changed about our plans for life or what we get to do with it. The life and death decisions were never really within our control. Of course, we know that. The real challenge is accepting and processing the shattering of that illusion.

I do try and remember to take more pictures now.