Hello dear friends, 

On April 12th it was one year. I had planned on writing a post then, but just didn’t have the words or the energy. Life keeps throwing us curve balls.

In January Alex was in the ER with unbearable and unrelenting back pain, and in March Emily was admitted to the hospital for a collapsed lung. In April my car puked on me again and I was without a vehicle for about 4 weeks. On a much more cheerful note, the first week of April I had a 6 day vaycay in Alabama to visit friends/family. I was afraid to go and leave Rob, but he wanted me to go. It was a much needed respite.  Also in April, I decided to try and fix my slamming screen door. Easy right? Just YouTube it, simple right? I fixed it alright. I stopped it from slamming, now it wouldn’t close the last 12 inches, so we had to tie it open because we didn’t want the wind slamming it open. The same day I “fixed” the screen door, I decided to mow the lawn. Well, wouldn’t you know it, the lawn mower, my NEW lawn mower from 2 seasons ago, the one I only used 2x last year because last summer was the worst summer of my life and I didn’t have the time or energy to mow, wouldn’t start. I did everything right last fall. I shut off the gas flow, I ran the mower dry and put it to bed for the winter. The measly screen door and the faithless lawn mower, 2 inanimate objects took me down and knocked me out. I felt weak and alone. Things that shouldn’t have bothered me, things Rob normally would have handled beat me up and stomped all over me.

The challenges aren't easing up, they are just different. Pressing on is hard. Difficult at home without Rob, and hard for Rob away from home. Hard for Rob to endure, and hard for us to watch him suffering, but we have no option.

Update on Rob: 

*Nausea is gone

*Pre-stroke weight 220, all time low was 166. He is now around 195. Appetite is good.

*He has some diminished feeling on the entire left side of his body and at the same time he is still in a lot of pain there. The skin on his arm and hand feels sunburned. This has gotten better over time, but still is disturbingly painful. He has spasticity in the arm and leg, more so in the leg, and when it happens, he cries out, sometimes in agony. On his right side he has developed pain in his elbow and his hand making it difficult for him to hold and manage his phone or to hold a pen to write.

*His pain interferes with therapy, which in turn gets him less therapy. This is disturbing to us, but we will not give up in advocating for more. I am constantly researching therapy, learning what we can do to give him more, and in turn more chances at regaining use of the left side of his body. I try to exercise his limbs, but he is a big man with heavy bones, and I find it very difficult, not to mention it is painful for Rob. Reading posts from stroke survivors and caregivers in on-line support groups will tell you that stroke survivors will continue to make progress years post-stroke. For some it may only be baby steps, for others it’s leaps and bounds, but progress is progress, and wins are wins, no matter how small.

*He is sleep deprived. Rob has not had a decent night’s sleep since well before his strokes. Imagine only getting sleep/naps in intervals of 2 hours or less every day/ night for over a year. In the hospital it was the round the clock checking of vitals, blood sugar checks, meds being given, therapies, and doctor’s rounds. Now, day and night, it’s either pain that keeps him up or wakes him up, or it’s his caregivers waking him to reposition him, blood sugar check, give meds, get him up for meals. It took months, but he finally had a sleep study. He has had sleep apnea for years and he had been using a c-pap, but 1 year prior to the stroke there was a recall on his machine, so he stopped using it. He was on a wait list for a new one when the stroke occurred. Hopefully, in spite of all of these disturbances, this will be the start of getting some restorative sleep.

*Depression is a roller-coaster. He perks up with sleep, visitors and when there are longer spans between spasticity attacks. Laying in bed helps the pain, but then laying in bed all the time interferes with daily activities and causes other problems.

Possible sources of depression: stroke damage in the brain, from ongoing daily pain, from his life changing in the blink of an eye, because he can’t walk, because he can’t use both arms/hands, because he hasn’t seen his home in over a year, because he can’t work, drive, golf, because this is not how he imagined retirement would be. He misses petting our obnoxious, but loveable cat. 

*On that note, visitors are welcome!!. Come chat, eat together, watch a movie or sports game. Read to him, ask if he wants to read to you. If the weather is beautiful, encourage him to get put in his wheelchair and take him to sit outside.

*He makes and receives phone calls, but he does not listen to voicemails. 

*He is just starting to text. I think the problem is eyesight. Along with needing his readers, he also has some visual field deficits from the stroke causing blank spots in his vision. He has a referral to a neuro-ophthalmologist, but I just haven’t had the time to research where to go.

*He still favors the right side of his world, but neither is he ignoring the left. He looks left, turns his head left, and when reading he has re-learned to look all the way to the left margin so he doesn’t miss any words at the beginning of a line.

And speaking of reading….Tada!

Rob has the bible reading this Thursday, May 16th.

And…..Drum roll…

The plan is to get him to the Kingdom Hall in person. We have a new friend who has a wheelchair accessible van, and he is allowing us to use it. We are so excited.  We had tried to get to the memorial in person, but as all of you Twin Cities friends know, that Sunday was a icky sticky slippery night, so we Zoomed instead.

*So far, we have gone out to eat as a family 2x. The first time was a bit scary, but we did it. There is no spur of the moment plans, as Metro Mobility requires advanced notice to book a ride, but we are just happy the service is available. Would you like to go out with us? Contact me or any of our family members and we can make plans.

*Anyone who has ideas on gadgets, Apps, tips and tricks to make daily living easier, more independent, more enjoyable, please let us know. If it involves techy stuff, more points for you if you’re willing to set it up and teach us how to use it. Also, looking for voice activated app to read bible to Rob.

Thank you for keeping us in your thoughts and prayers. Thank you for checking on us, for calling us, for the text messages and for the visits. Rob loves the visits. Please continue to remember us as this fight is nowhere near over. Try as we may to take care of ourselves, we are exhausted physically, struggling emotionally and welcome your support.  

We know that relief is coming, but that doesn't mean that each day isn't a battle. We know that so many of you are struggling to get through every day as well, you most surely are in our thoughts and prayers, please keep us in yours. 

“Come to me, all you who are toiling and loaded down, and I will refresh you.”

~Matthew 11:28

“He gives power to the tired one, And full might to those lacking strength.”

~Isaiah 40:29

Love to you all,

Twila

Alex & Emmy

Isaac & Keely

~The Best Way Out is Always Through~