Tag Archives: stroke recovery

Recovery continues

I wish I could say everything is wonderful on the recovery front. It isn’t. We are not back where we were. We are in a holding pattern with very slight increments of improvement.

That being said, I do have a lot of positives to report. The most important is my husband has learned to pace himself with the stroke fatigue. We have accepted it as a real thing and we have adjusted to account for it. For example, Tuesday evening is my husband’s pool night with some buddies. In preparation for the evening yesterday he rested a lot during the afternoon, deliberately taking a long nap and spending a lot of time lying in bed with his laptop doing things that require little or no mental energy. The result was he was able to enjoy the evening with the fatigue only starting near the end of the last game. Now I realize that we are very lucky that he can even walk over to the senior’s centre by himself and play pool. Many people after a stroke simply could not. So I am grateful for that. However, if my husband has to miss his pool game because of post stroke fatigue or miss pool because he can not walk over there, he is still missing his pool game due to the stroke. So this adjustment is a major and extremely important one though it might seem very small.

It is the same thing with his work. He is retired but he loves continuing to do science to and mentor people.  We recently finished a paper linking code biology and our differentiation waves. He did all the final editing of adding the references and numbering the figures and the process of submitting it. He did it at a much slower pace than he would have before but it did get finished. He did not stay up all night and push hard to get it in on time at the last minute. That would have been the old pattern. This time he deliberately got it done well ahead of the deadline so there would be no last minute crush. Other things were neglected in the meantime but it got done.

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I am happy to report he is taking this recovery and rehab thing very seriously. He has been using his treadmill desk faithfully and dropped two inches from his waistline. That is the only risk factor he has for stroke that he has any control over. He doesn’t drink or smoke. He can’t control genetics or his age. He can control his weight and fitness. Plus he has started a ping pong club with his friend Frank Chen for Thursday evenings at the community centre. Ping pong is very good for working on hand eye coordination and forcing the body to use the slightly weaker left side. He was exhausted after the first session but it was a good kind of exhaustion. We even had a good turnout with seven people showing up.

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Our friends the Chens have a new dog and they have been bringing the dog over for play time with our Misty. Both dogs have great fun and it’s good for us when they wear each other out.

We have both suffered a blow to our sense of invulnerability and immortality. He could have died. The feeling of shock is wearing off but we are still both looking over our shoulders watching for the grim reaper. We went out to view some property with a friend and his family that they are considering purchasing. We were having such a nice time on this rural property that we did not keep track of time and we did not hydrate. We abruptly had to leave because my husband had a dizzy spell. The drive home took forever and I was panicking while pretending I was not. I knew rationally that this was likely a side effect of the meds. We had been warned about that. It was most likely not another stroke. We got him home. The blood pressure monitor confirmed he had dropped too low, and we got fluids into him and he had a chance to rest and recover. I had my heart in my throat until he woke up feeling fine.

Afterward, everyone said how wonderfully calm I am in an emergency. I am faking it. Inside I was coming apart at the seams and I’m sure if I had used his machine to take my own blood pressure, I would have blown the thing up. Once it was all over, I had to go and vent to my good friend who is marvellous about listening and nodding sympathetically and just being supportive. Another lesson learned. No long hikes without hydration before, during and after. Hopefully, at the three months post stroke check up we will be told the artery is healed and we can begin cutting back on some of the more powerful meds or reduce the dosage.

We got a bunch of money back from our insurance plan for the drugs he’s on. To our disappointment we only got about half back. It turns out that in Manitoba pharmacists can charge all kinds of extra things like dispensing and counselling fees and there is no regulation on these. It is a free market. We found out our local pharmacy is among those who double the cost of drugs with those additional fees. Who knew? Next month, Manitoba will finally join the rest of Canada in regulating those extra charges. Meanwhile, we are looking for a different pharmacy. We will now be shopping around for the lowest additional fees instead of going where it is convenient and the pharmacist tells a good joke or two. Another lesson learned.

Now those slight increments I mentioned. Before the stroke my husband would typically join me at bedtime around 11:00 am and then get up about 1:00 am and work until about 5:00 am and then wake up with me about 7:00 am. When we first got home from the hospital, my husband needed a good sleep with no working at night and about eight naps, some of them two to three hours during the day. In other words, he was sleeping pretty much all the time. He is now down to about four naps a day and most are only about forty five minutes though there is usually one that is over an hour. He is working at night for thirty minutes to one hour. Part of the improvement is simply he needs less sleeping which is real recovery and part of it he is getting the knack of pacing himself and resting before he needs to sleep. That is our small incremental improvement.

In the meantime, our world remains much smaller. A trip to town for groceries we can’t get from Frank’s little store in town and a short visit, left him worn out the next day and unable to accomplish much even though he slept during the one hour drive there and back. We have a regular dental check up coming up in a couple of weeks. That is also a one hour drive. We have our son, his wife and three grandsons coming for an overnight visit. I am a bit concerned about managing. Trips into Winnipeg are basically out of the question. Our world is going to be centred as much as possible around Alonsa for a while yet. Given all the support and friendship we have been enjoying, I can think of no better place for us to be stuck.

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Yesterday Felt Normal.

Yesterday felt normal. That seems like a strange thing to say but all day yesterday I felt like life was as it should be and had been before the stroke. In fact, I didn’t think about the stroke even once during the day. I realized it as I fell asleep and I awoke contemplating how that happened. There are two main reasons. First it was cool and it rained off and on all day. It was also the Sabbath. A slow sleepy day of doing very little and relaxing and taking a long nap on such a day was entirely normal before the stroke and so the slow pace felt entirely normal yesterday.

The second reason is our new doctor told us to only do the blood pressure thing with the new monitor three days a week. We are to measure blood pressure morning and evening Monday, Wednesday and Friday. The blood pressure thing was what the doctors fussed so much about during and after the stroke. During the stroke his blood pressure had soared up to 220/180. The first twenty four hours after we got to the hospital he was hooked up to a monitor that sent telemetry to the ICU because whenever his blood pressure went over 180 on the top number they added drugs to his IV to bring it it down. For the first night they were giving him so much they were worried about accidentally stopping his heart. The blood pressure was the thing they continued to fuss over until he was released. It was such a relief when he got home that it went from 180ish to 140ish in 24 hours. (Hospitals are stressful places.) After the first two weeks and a change of one of the three blood pressure medications back to his old one, the one we knew worked, it dropped again to the 120ish range. Each time we take out the monitor it is a reminder of the events. When it reads as normal we have a sense of relief but there is still that reminder. Saturday we had no such reminder.

My husband is now back at his regular work although at half the pace. He has several collaborators from around the world. Many of them are students or junior professor types and some of them are from countries where the education is spotty or English is not the first language. Much of his time with them is spent doing things like explaining why you need a scale bar on a micrograph or how to better word an abstract for publication or how to write a grant. He also spends a lot of time converting the universal language of science, bad English, into native English (albeit American English.) It is not just junior people. He translates for scientists who are senior in ability and expertise to him in their fields with whom he collaborates. He does all this via Skype and Google Hang Outs and similar communication methods. Prior to the stroke, he dedicated Mondays to collaborations and he would literally spend 12 hours giving each person one hour of undivided time. He has been having on line meetings with a few people this week where projects are urgent and his presence cannot wait and that has been going well, even at the slower pace. Tomorrow he begins his regular mentoring day once again. He has switched from one day of twelve, hour-long blocks, for two days of hour-long blocks interspersed all through Monday and Tuesday with down time in between. He will not get as much done of his own writing on Tuesday but he thinks he can handle the mentoring/collaboration this way even with the fatigue. He has warned everyone that if he gets too tired they will have reschedule. They are all being so supportive it is heartening.

We missed the wild Saskatoon berry picking season we always took in during previous years because of the stroke. To our delight and gratitude a group of young people in the community picked pails and pails of a bumper crop and shared with us. I made Saskatoon pie and it was heavenly. Even if there wasn’t enough to make jam it still felt so normal to eat Saskatoon pie in summer. Bless those kids. I’ll bet they have no idea how much they brightened up my special normal day with their small gesture of kindness.saskatoon

On the home front we have always split the household chores. He makes breakfast and I make supper. He does the laundry, I do the dishes. We share the lawn mowing. He has been too tired to do his share since we got home. Because it was raining and it was a slow sleepy day, it didn’t matter. He was able to do things indoor as he normally did before. He took a mere four naps/rests instead of the typical eight to ten he was doing. And we even managed to get a nice long walk with the dog in-between rain showers. I am hopeful this indicates an upward recovery trend. It felt so good to feel normal.

 

 

 

Lover to Caregiver and back again.

I can’t really claim I have been transitioning between the two states very well. Yesterday we went for lunch to Riding Mountain National Park. The park is only forty kilometres away but once we get to East Gate, we have another thirty five kilometres of extremely challenging roads to get to the town of Wasagaming. In the past, we have loved this road because we always see some wild life and often it’s a bear. The road goes up several switchbacks and then continues through beautiful wild country with small rivers and wildflowers, little lakes and wide marshes. When the rain is heavy, the road can get washed out. It was raining heavily. Plus in the back of my mind was the fear. It was a seatbelt accident that caused the carotid artery dissection so I worried the whole way even with the new seatbelt cushion and head rest. When a deer ran out in front of us crossing the road I didn’t gasp at the beauty and grace as I have in the past. I cursed the need for a sudden stop. He slept through it all.

We had a lovely time visiting friends and eating lunch. I watched to see if he got the fatigued look. He did, but when I asked if we should leave early he assured me he felt fine. We ran into our son, daughter-in-law and youngest of our two grandsons and had a happy reunion at the art gallery where our luncheon host had her work on display. What a bright spot of joy that was! We stopped for gelato. He was the charming host insisting on paying for everyone in our group. It was good to see my lover back. We left and started the drive back. He fell asleep slumping over the seatbelt and I woke him immediately and insisted he put down his head rests and not droop over the seatbelt. He didn’t listen. I had to tell him twice. I don’t like that. He is an adult. His wife should not nag him. His wife should not have to remind him how to behave. Lover to caregiver again.

He perked up on the drive through the park after a short nap. My lover was back. We enjoyed the drive through the park back to east gate together talking like the damned stroke had never happened. We stopped at the overlook to take a selfie like the damned stroke had never happened. This spot has many fond memories of many fine trips with friends and family. It’s sort of a tradition to stop here and look towards home. It was just like the damned stroke never happened. Once we were out of the park, he slept all the way home, not even waking completely when I stopped to fill up on gas. Once home, he was cranky and out of sorts. His computer wouldn’t start properly and he was angry and ready to spend hours on the phone with Apple support even though he was still exhausted. I stopped him. I fixed the problem. It was trivial. He should have known that fix but he was too tired to think straight. Afterward he apologized for being cranky.

Today he complained he is too tired to do much of anything. We go out for a six hour spell for an easy lunch with friends and a short stop at an art gallery and a nice drive and he needs the next day to recover. I tell him it’s okay. I tell him this is normal. I am patient and kind. I remind him this three day camping trip he hopes to make with friends in a couple of weeks is likely not a good idea. He’s not recovered yet. He agrees. Again I am left feeling like his caregiver not his lover.

This is normal after a stroke they say. This is the way it will be until he recovers. This may be the new normal. I may have to live with these odd moments of caregiving in order to have the sweet moments remaining with my lover. It is a price I am willing to pay even if I would prefer not to. How many widows would pay far more for far less? Still it would have been better to not have to pay this price at all. it would be better if the damned stroke had never happened.

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