Dieter Zander Update

Dieter had a follow-up cerebral angiogram today, and the news was not as we had hoped.  We were hoping for a confirmation that all arteries are flowing well, and the damaged sections are healing.  Instead, the angiogram revealed that one damaged section is not healing and is, in fact, slowing the flow of blood in Dieter’s brain.  The doctor’s recommendation was to do another procedure similar to what was done on Feb. 4, in which another stent would be placed in Dieter’s artery.

I should know tomorrow how much time we have in which to make this decision.  We have at least this week, as the doctor meets with colleagues on Friday morning in order to get other opinions.  Please pray for us and this decision.

For several days, I’ve wanted to share with you the lyrics to my favorite of the many songs Dieter has written.  It’s called “In All of My Living” and is based on several old Celtic prayers.

God, be in my head, in all of my thinking / God, be in my eyes, in all of my looking
God, be in my mouth, in all of my speaking / God, be in my life, in all of my living
God, be in my heart, in all my understanding / God, be in my hands, in all of my working
God, be in my legs, in all of my going / God, be in my life, in all of my living,
And God be at my end and in my departing.

These lyrics describe how Dieter wishes to live.  But they have particular poignancy is we pray for his body, his health, and his recovery.

Thank you, Valerie

On March 19, I wrote “Sometimes really good things do happen.”  Well, sometimes difficult things happen, too, and, starting on Easter afternoon we’ve had the following:  Kyle got sick, I got sick, the dog got an ear infection, the vacuum cleaner broke, and the kitchen pipes backed up . . . twice!  None of it is too serious, but it is really tiring.  I have not had the energy to write an update, plus I’ve mostly lost my voice, so I couldn’t even phone it in.

Dieter has continued with therapy, though two of the therapists have asked him to relax and enjoy  his “assignments” more.  They’ve warned him that pushing as hard as he is will not help him recover faster and may in fact slow his recovery, through discouragement, exhaustion, or injury.  So, in different ways, both of us are needing to slow down.  As I’ve asked before, please pray for us to know when to work and when to rest.

This year, Holy Week and Easter Sunday were unusual.  Loss and grief mean something different to us now, as does the hope of resurrection.  I dearly wished Dieter and I could talk with each other more fully about his reflections this year.

Yesterday was the 8 week mark of Dieter’s stroke.  If I had forecasts or predictions from reliable sources about his recovery, I would share them, but I don’t.  In the absence of such predictions, we work and wait and hope and pray.

Early in the morning, as has always been his habit, Dieter makes coffee and spends time praying.  Because he has the Bible on his laptop, he can search for passages he wants to read.

We usually work together to make breakfast for the boys, and, after Conrad and Christopher leave for school, Dieter and I take our dog on a walk for about 45 minutes on some hills near our house.  

When we return, Kyle leads Dieter for 30 minutes of physical therapy, which consists of exercises for strength and balance.

Mid-morning on Mondays, the occupational therapist comes to the house.  On Tuesdays, Thursdays, and Fridays, it’s speech therapy.  If a doctor’s appointment is necessary, we try to fit it into Wednesday mornings.  

Late morning. Dieter practices using his right hand, whether on the piano, by making lunch, or by trying to type an email.  After lunch, Dieter naps for about two hours.

In the afternoon,  Kyle repeats the physical therapy, and I try to fit in a session of speech therapy practice.  Christopher sometimes works with Dieter at the piano, playing and singing scales together.  Dieter might work on his computer or play a little basketball with the boys.

Evening brings us to dinner, which has usually been brought by a friend (many thanks to all of you!).  Of course, at this time of year, evening usually also brings a game or two from March Madness.  We retire pretty early.  

Please pray for us to know when to push hard and when to rest.  Also, please pray for Dieter to be able to speak again.

Sometimes really good things do happen.  Here are a few from our last
six weeks.

At the first hospital, when Dieter’s family was here, we received a
visit from one of the hospital’s chaplains.  A friend of ours who
works in the hospital had asked the chaplain to check on us.  This
chaplain is German, and she was able to speak in German with Dieter’s
parents, helping them to express in the easiest possible way all that
was on their hearts.

At the second hospital, Dieter’s physical therapist was the first
person who helped Dieter walk.  A few weeks later, a friend of ours
reminded us that, years ago, we were seated at her wedding reception
next to this same physical therapist and his wife.  Neither the
therapist nor we had remembered, but since our paths crossed again,
he is available to advise us on the best exercises for Dieter.

At the third hospital, one of the physical therapists recognized
Dieter’s name when he was admitted, and thought, “Maybe that is the
same Dieter who was my pastor back in the early 1990s at New Song.”
She re-introduced herself to us, and she was in charge of Dieter’s
physical therapy for his two-and-a-half weeks in that hospital.

Now we are home and receiving home visits from the occupational
therapist.  It turns out she is a pianist, too.  She was able to show
Dieter piano exercises that are good for his hand.  I am so grateful
for someone who “speaks piano language” with Dieter, which I cannot do.

Thank you for sharing with us in the good times and the hard times,
which, I think, tend to come all mixed together, not sequentially.  Val

At our family dinners, we frequently tell each other “highlights and lowlights.”  When it comes to how Dieter is doing, I’d like to tell you our highlight and lowlight of the past several days.

Our highlight was an appointment last Thursday at UCSF, a major research hospital in our area, for a second opinion as to Dieter’s current treatment and level of rehab.  Both the medicines he is currently using and the program of speech therapy were confirmed.  More importantly, the neurologist, who specializes in strokes, said that Dieter is doing amazingly well considering how recent his stroke was and how many medical setbacks he has had since then.  She was very encouraging about the outlook for Dieter’s recovery.  We also wanted a second opinion on options we’ll consider for preventing future strokes.  It was harder for the doctor to say anything definite in this area, but she did confirm that, for the time being, our focus should be on Dieter’s rehab.  That means working on speech therapy, therapy for Dieter’s hand, lots of physical exercise, good nutrition, rest, and stimulus for the brain in the form of learning new skills.

Our lowlight was trying to cope with Dieter’s frustrated desire to communicate.  Our youngest son, Christopher, wrapped a musical today in which he played the lead.  Our middle son, Conrad, is hearing from colleges that have accepted him for next year.  Our oldest son, Kyle, is shouldering the responsibility for Dieter’s physical therapy and many of his doctors’ appointments.  Can you imagine Dieter being so proud of each of his sons and unable to tell them so?  It can be a real heartache.

To our friends at BayMarin:  It was good to be with you briefly this morning, and, as I said, we do look forward to sharing our stories and hearing yours in the months to come.

Today is the fourth day of being home.  On the whole, being home is good; Dieter feels stronger and more rested, and he gets to enjoy the yard, the hills, the dog, naps whenever he needs them.  At the same time, being home highlights how different life is now than it was before February 4, and that can get depressing.

We have a good week planned, starting speech, occupational, and physical therapies with professionals and here at home.  We will be following a schedule like the one Dieter had at the rehab hospital.  We also have some follow-up appointments with doctors.  All five of us will be getting used to the new schedule.

We are working on a plan for people to visit Dieter in a way that suits his energy level, so I’ll let you know about that as soon as I can.

Dieter came home yesterday to welcome banners from our boys and our neighbors, and flowers, balloons, and cards from our church. Another highlight for him was eating good food for the first time in a month!

Dieter expressed to me that what has touched him the most is: seeing our boys, knowing that people are praying for him, and taking the dog on a short walk on our usual route, which has wildflowers right now. It’s amazing what being outdoors can do for a person’s heart.

The first step towards getting enough speech therapy is in place. This coming week, we have an appointment with a new speech pathologist, and apparently we will be able to negotiate ( a little?) for the number and frequency of appointments. Occupational therapy is also in place. The other follow-up appointments either still need to be scheduled or are scheduled for the end of March and therefore need to be moved.

Last night, Dieter’s doctor told me that Dieter can come home this Thursday!  All five of us are so pleased and relieved.

Yesterday, Dieter’s intestinal infection caused him so much pain and weakness that he canceled two physical therapy classes.  He has never done that before, and, in fact, has often stretched his classes by 10 or 20 minutes.  I was so worried about him that I decided to wait to speak with his doctor and spend the night to keep an eye on Dieter’s level of pain.  The doctor came by around 7:30, assured me that the infection would be on the wane by today, and told me that Dieter’s
discharge date is Thursday.  I was surprised, skeptical, glad, all at once.

Dieter’s pain did, in fact, decrease over the course of the night, and he was pretty energetic and hungry again this morning.  He is looking forward to coming home.

Tomorrow, I will be trained on how to continue some of the therapy exercises at home, and I will, in turn, teach our sons.  Dieter will have a full day of therapy tomorrow, and then leave the hospital
Thursday morning.

The next step is to set up physical, occupational, and speech therapy on an outpatient basis.  Our desire is to get the greatest possible number of speech therapy appointments per week, especially in these early months.  As you can imagine, that is primarily a task of dealing with bureaucracy.

Another challenge for these next weeks and months is to go back to the cause of this stroke and start addressing what happened, how to fix it, and how to protect Dieter from more strokes.  I will try to explain more about this another time.  We foresee consultations with Kaiser, Stanford, and UCSF in order to find out if any surgery is advisable to protect Dieter.

All of that I’ve just mentioned - setting up therapy, doing some therapy at home ourselves, and obtaining and following opinions from different medical centers - are long-term, daily tasks, the kind that require persistence.  I imagine that it will all be more joyful, though, with Dieter at home.  Please pray for us to be able to settle in to being all at home together and still keep that fighting edge for the road ahead.

Thank you, Val

Dieter communicated to me today how amazed he is by all the prayer and signs of caring he is receiving. Thank you.

He has an intestinal infection, which explains the stomach issues of the last couple of days. The only good side of this development is that Dieter was moved to a private room, so that he won’t get anyone else sick. Being in a private room means that he will be able to sleep better.

The infection came from being in the hospital, so at some point we need to weigh the risks and benefits of inpatient versus outpatient rehab. At home, Dieter could be more relaxed, sleep more consistently, eat better food, not catch infections. But he needs to be medically stable and physically strong enough for that to be a good move, plus we need to be assured that all the rehab classes can be continued at the same level if Dieter “commuted” to them from home. Please pray for wisdom on this decision.

Thank you, Val