Story of Velda

The Story of Velda
This is a True Story!
by Bruce Mansfield Beach

This web page is a log that is being maintained to tell about the continuing recovery experience of Velda for whom we did the ten day mCIT stroke reversal intervention.

Prologue:

This is a TRUE story.

November 15th, 2008, eighty year old Velda was found lying on the floor of her home. I first saw her three days later, lying in a hospital bed. She couldn't speak. She couldn't move her right side at all. She couldn't or wouldn't move her left side. Her best friend, Dana (whose son is married to one of Velda's daughters), had a stroke a few months earlier and eventually they ended up in beds side-by-side in a nursing home. This is the story of what happened - before and after.

My wife, Jean, (Velda's sister) was in a distant hospital recovering from an operation when Velda had the stroke and so it was over a week before she could go to visit Velda. By then some of Velda's children were visiting her regularly but a month later she was still in the same hospital where I first saw her, still not speaking, although she could now drink from a cup using her left arm. She would nod yes or no, if offered some particular food or asked if she wanted a book read to her. At this point she was transferred from the hospital to a temporary nursing facility until space would become available in a permanent nursing home.

While Dana was in the temporary nursing facility I became aware of a stroke rehabilitation center some considerable distance away. Dana had been sent there for the six week program but had been returned to the nursing facility after just two weeks, because of lack of progress.

We were daily (or every other day) visiting Velda in the temporary nursing facility, as I was reading a book to her, and I pressed with the administrative staff that she be transferred to the stroke rehabilitation center. The staff felt that the doctors would feel that she was too old but I persisted and spoke with the doctor and when a vacancy unexpectedly occurred over a holiday I happened to be there and she was on her way in the ambulance in less than two hours.

We only had the opportunity to make the distant drive for one visit before two weeks later Velda was back in the ambulance (for lack of progress) and returned to the temporary nursing facility before being transferred a few days after that to the permanent nursing home. At this point she was in a wheelchair.

We continued to try to visit Velda daily, sometimes twice daily, as I worked with her to start using a walker. The nursing home insisted that if we took her out that it had to be in a wheelchair and initially that if she tried to use the walker that two people be with her, one on each side - with someone pushing the wheelchair along behind. For weeks, we made a bit of a parade through the nursing home halls. Velda and her walker, myself behind or at her side and then Jean pushing the empty wheelchair and accompanied by our service dog (which is another story). Indeed we had become somewhat fixtures in the institution with most everyone recognizing us and I would read once a week in a general room to any of the residents who wished to come and join our group.

I continued to research the problem of stroke, as did Jean. We attended Velda's evaluation session with the speech therapist and an expensive special licensed / certified physical therapist was hired by the family. Conventional medicines were used by the nursing facility physicians and alternative medical approaches such as aroma therapy, natural oil therapy and other practitioners were brought to the nursing home, by members of the family inclined in that direction, and she was taken on regular visits to a chiropractor.

I personally devised and implemented some physical therapy routines such as a ball that she would squeeze and a foot / leg strap that I would help her with to pull up her leg in bed. Even before Velda went to the distant stroke rehabilitation center I had heard of Constraint-Induced Movement Therapy and I asked that it be considered there, but was unable to break through the channels to get any attention to the idea.

And so matters stood, much as they often stand for many stroke victims and their families. The nursing home staff and her physicians saying that we should reconcile ourselves to the fact that Velda was never going to leave that permanent residence. No further course of recovery treatment was being implemented, recommended, or even being considered by the professional staff.

Velda, however, like many nursing home residents, wished to leave the nursing home and return to her own home. No medical staff supported this move, and a review was required by a government evaluating agency. Several family members participated in a several hour long interview and while the interviewer felt that in most cases they wouldn't recommend it - that in this case, since family support was so strong, they would authorize it so that some government funding would be available in modifying her home access and bathroom, and in providing some daily care each morning and evening.

Velda was / is a long way from really being able to live this independently, but a number of support programs are being devised / planned / obtained - such as an emergency alert button that she wears on her wrist, family members preparing additional food when they cook and placing the meals in her freezer, Jean (who is also over eighty) accompanying her on community provided elder trips, and so forth.

It was at this point, before moving Velda home, that I decided to try to implement Constraint-Induced Movement Therapy, myself. I read on the Internet as much as I could find about it and contacted a clinic in California that offered the service. Twelve days before Velda was to be discharged from the nursing home we started to pick her up daily after breakfast at 8:45 a.m. and return her to the nursing home at 4:45 p.m. for her five o'clock supper hour and so that she could sleep there.

The therapy was performed for 3 hours in the morning from 9:30 a.m. until 12:30 noon when we stopped for lunch and to let her have a half-hour nap as recommended by a clinic in California. We then resumed at 1:30 and continued until 4:30. Both three hour sessions consisted of alternating periods of 20 minutes drill and 10 minutes rest, which during the latter we would encourage her to get up and walk around, go to the washroom, or have some refreshment.

I will describe the experience that we went through day by day.

First we conducted a pre-therapy test, which we re-administered at the end of the first week and also at the end of the second week.

This is the TEN DAY daily diary that I kept.

Day One: (Monday July 6, 2009)

With Jean's help I got Velda from the car to house using her walker. As usual, Velda's hand grabbed hold of things like the car seat belt and I had to pry it loose. We helped her up on the landing in front of the porch. I have arranged this landing so that there are never two steps at a time but rather always a landing in between.

At 9:30 the helper arrived. We have here two categories of people you will see me mentioning - 'helpers' and 'workers'. The paid (by Velda's trustee) helpers are those who help Velda with the drills and the workers are volunteers that come to work on our small farm on which we grow gift food for street people in the city.

Our first helper was a young lady who would be entering her third year of nursing college in the fall. I had suggested to the employment office that this might be a good first job for a young high school student but he warned me that wouldn't work because about the second or third day we would get a call from the student saying that her/his mother had said they couldn't come in that day for some reason. This young lady had experience working with stroke victims, and in volunteer services dealing with drug addiction and suicide prone, all signs of real social commitment.

I had called the contract physical therapist from the hospital and asked her to come out and evaluate what we were doing and to give any suggestions. She had previously worked with Velda. I asked her if she were familiar with Constraint-Induced Movement Therapy, and she assured me that she was, but when she arrived and found Velda with her hand tied down she said she had never seen anything like this before.

The therapist directed a number of repeated questions to Velda.

Velda assured her that she was okay and was wanting to do this. No, there was no elder abuse or torture involved here. Then the therapist said to me - "I think that all this is counterproductive and will do more harm than good."

I told her about the clinical trials and the experience of others. That the experiments had been replicated in a number of locations by qualified Ph.D researchers in the field using control groups and recognized scientific method. The improvement shown after 10 days was between 50% and 80% for the experimental group and for the control group which received just traditional post stroke physical therapy the improvement was zero. At a two year post evaluation the experimental group had continued to improve and the control group still showed zero improvement.

If it had not been that I am former professor in the social sciences and used to dealing with discussions about the scientific method and that I was at one time employed as a psychiatric social worker and that Rae, a trained psychologist, was there with me - the whole matter might have gone badly. As it was, our nursing student sat there and repeatedly protested that she was innocent and had nothing to do with the going-ons here.

In the end the physical therapist said that while she didn't think it would do any good, it still probably wouldn't harm Velda. I asked the therapist to bill the trustee for her consultation and she said there would be no charge (I think she didn't want to be associated with the activity).

Day Two: (Tuesday July 7, 2009)
This morning the student helper informed us that she too would be quitting.

"I have talked to other therapists and they tell me that we will do Velda more harm than good."

I asked her to stay a day or two until we could get a replacement, and she agreed but when she came back from lunch she said that her mother had said that she couldn't come in the next day.
Ray and I would watch and analyze what the helpers did and then sit in another room and discuss it. Our discussions, often including workers and others who were about, went on for hours each day and late into the evenings.

Day Three: (Wednesday July 8, 2009)
The replacement helper came at noon. Rae conducted the morning session. He has a much better bedside manner than I do. Rae had been with us since Sunday to help us prepare and get started. Rae then left in the later afternoon.
I am not at this point going into the details about drills because I cover all that in another section. What I am wanting to do here is give the flavor of what the activity is like. The drills are very monotonous and at the same time very demanding.

Day Four: (Thursday July 9, 2009)
At noon the replacement helper said that she would be back at 1:00 - but we never heard from her again. Helper burnout can occur very quickly. I relate all this just so that you may know that it can be very difficult to get good help. (I am sure they would come and stay if we could pay ten times the price.) So anyway, it was Jean, Velda and I in the afternoon with a farm worker popping in and out.
There is a lot more going on also. One person can't do it. There is constant meal and refreshment preparations. There is assistance for bathroom trips. There is constantly some additional item, (scissors, belts, pillows, hearing aid batteries, just dozens of items - being needed and other care given).
Things that I notice are that this morning Velda let go of the seat belt on the car on her own in order to take the walker. I notice that I can get her to let loose of anything - by offering her something else to grab. She goes flying through many of the drills - but that may be just because she has learned the drill. We don't practice the test because that would be 'teaching the test' and we would have nothing against which to measure.

Day Five: (Friday July 10, 2009)
The next new replacement helper couldn't come because of not having a baby sitter arranged, so it was Jean, Velda and I for the whole day. I gave the mid-course test and was both surprised and disappointed that it showed no improvement. It may be that tests and facts don't lie - or that I am measuring the wrong thing. Anyway - the plan is to continue the next week.
In the afternoon a worker headed up to field with our water tanker that he had filled at the house. He got out on the street and gunned the pick-up and the ton of water slammed against the back of the tank and tore it off the truck in front of the house. It knocked out the five valves at the back of the tank and the water poured out onto the street for fifteen minutes. I had to go out and help direct traffic so Jean was left alone with Velda. We would eventually get it all back together.
In the morning the pockets had torn off Velda's walker so as we prepared to leave I had to carry her house-shoes and book. Velda had managed to make it up and down the steps on her own the couple of previous times so I thought she would be okay and I didn't wait for Jean. This time, one wheel on the stroller caught and Velda started over. Since I had only one hand on her I had to go with her to break her fall.
Velda was okay - but I ended up in the thorn bushes with Jean arriving to look down at me. Falls are part of the game. Velda had fallen five times in the two days that we had her home the week before - and then fell twice more at the nursing home over the weekend so they sent her down to the hospital in the ambulance. She was just back from the hospital on Monday morning when we started this regimen.
It may not have seemed like a good week. No progress on the test. Helpers quit. Water tanker lying in the middle of the road. And here I am lying flat on my back on the ground in the middle of a thorn bush with Velda sprawled out on the sidewalk. I can get down okay - but I can't get up off the ground at anytime. The thorns went right through my clothes and Jean would have to pull me up off the ground. I could almost have said "Darn", but I didn't.
Jean got me up - and I got Velda up - and we made it through the week. I just want to give you a flavor of it all, but until you sit through a few hours of the drills - you won't know.

Day Six: (Monday July 13, 2009)
This is the beginning of the second week. I rather suspect that all the therapy routines, studies, and so forth have been set up on this five day on and two day off rotation for the convenience of the working hours and office hours of clinic staff. But still - a break may not have been a bad thing for Velda.
The new replacement worker couldn't get a baby sitter again this morning, so she called and said that she would try for tomorrow. It is difficult to do it with Jean. Jean says that she thought we were doing it "together" and that I keep giving orders. One person has to be in charge. It is like driving a car or anything else. There can only be one hand on the wheel. Anyone and everyone may suggest that we turn right at the corner but no one must reach over and grab the wheel.
We have to take lots of breaks anyway - but if there is 'discussion' about what to do next, that just wastes time. Waste half the time and it is like only doing one week of drills - instead of two.
It is all exceptionally tough on Jean also. Our septic tank leach field quit and has to be replaced so Jean is not able to use the clothes washer. This means taking the laundry to the laundromat downtown. The schedule is killing her garden. No time for weeding.
This is just to let you know that if you do this at home - life is going to be more tense.

Day Seven: (Tuesday July 14, 2009)
Helper never called yesterday to say she hadn't found a babysitter but another person called in the evening from the help agency and I told them to come on in this morning. Never showed up.
Still another person called from the help agency this morning - so I told them to come at noon. Never showed up.
I don't know what happens with people that they are eager and enthusiastic on the phone and say that they will be right there - but then never come - or call.
But - there are advances that I can see also. We go for a longer walk each day and this was the day that I did the 'kick' photo which you see up above and also the day that we took the picture and of Velda and Dana at the nursing home.

Day Eight: (Wednesday July 15, 2009)
Today seemed a setback with Velda also. Before she had the balls just flying across from one pan to the other. Everyone has said that we are past the balls - that they are too easy. But I say no, we haven't started with the balls.
Now that we do the drills slowly, taking a ball, looking at it, holding it, turning it over in her hand and then putting it down in the other tray - she often can't do it. It takes a lot of breaks in between.
Another lady (Cindy) has called and says she will come tomorrow. I have lost count. I don't know how many helpers this makes.

Day Nine: (Thursday July 16, 2009)
Cindy came this morning and she and Jean have stayed busy with Velda. Sometimes it is all three of us. I am kept busy also, although I do try to find time to make these notes. There is lots of coordination that has to be done about Velda coming / going home day after tomorrow. Her daughter is getting Velda's house ready and there is going to be needed a lot of help in moving her riser chair, treadmill and so forth.
Cindy took Velda for her morning walk. Each day Velda walks further. Yesterday for the first time Velda understood how she was placing her foot wrong. Until this is corrected - treadmill isn't good. I think we may need the 'third' week of mCIT but next week her friend is coming to visit her from New Zealand.
Eventually, we are going to have to do the mCIT bandage the good leg routine - and I have an idea for a new 'mirror' therapy arrangement so family members are looking for mirrors today.

Day Nine: (Friday July 17, 2009)
Cindy came again today! And I am so glad because this is a particularly pressing day. Doing the 'end' test and all. Confusion enough - and I set the timer wrong and had to guess at the last minute. But, to make sure - we did the test over. That had disadvantages and advantages. The disadvantage was Velda was tired from the first test - and even the younger healthy adults that we had do it to set a standard had complained because it is tiring.
The advantage was that Velda had the benefit of 'practice' in going through the test the first time. This is called teaching the test and is considered a 'no-no' and one is supposed to avoid such 'advantages'. However, in this case it may not have made much of a difference because the score was thirty (30) both times.
I consider this to be astonishing because given that we started with a score of sixteen (16) using the formula 30-16 divided by sixteen means that we had an 87% improvement. We may not be using the same measuring device as others have but the method that we have here is one that anyone can replicate.
As to using two types of tests - I am reminded of the saying that "a man who has a watch always knows what time it is - but a man who has two watches never knows." So - all I can say is that by both our test and our observation, Velda is greatly improved. That is not what is important however. What is important is that she on a path of 'improvement' and we can expect to see continued improvement.
Much enthusiasm at this very moment. Cindy just came back from a walk with Velda and is exclaiming how she used her right foot first to go down the steps and that she noticed at another place where they had to go up Velda used her right foot first and actually 'lifted it' noticeably off the ground when stepping forward. On their return Velda used the right foot first to come up every step. So that is another first of using the right foot in seven out of seven opportunities to do so. Always before there has been some occasion where she has just said that she couldn't do it and we would stay there trying for a minute until she could do it or we gave up and used the other foot.
Yes, we can see definite walking improvement and this is all the more amazing in comparison with CIMT studies because there they emphasize just the upper-limb and we give almost equal attention to both the upper and lower limbs. Considering this and the other limitations that faced us (using restraint only 15% instead of 90% of the time, our lack of experience, Veldas' age, etc.) I feel that we should be very grateful and consider the results to be amazing!

Postlog:

Dana (on the left) and Velda (on the right) after Velda has had 7 days of mCIT and four days before Velda checks out of the nursing home. Dana's son is married to Velda's daughter and their homes are two blocks (if you can say we have blocks) apart in the village. Velda wanted to return to her home but we couldn't talk Dana into doing the mCIT therapy. Dana can't (or doesn't) use her left hand and foot and so is wheelchair bound and will probably always remain in the nursing home.

I will try to update this postlog in the days ahead. Velda will be out of the nursing home tomorrow and we still don't know whether she will be coming to stay with us for a few days or going directly to her own home.

(Saturday July 18, 2009)

Velda was picked up this morning from the nursing home by her daughter Marlene. Marlene asked the nurse at the registration desk what the check out procedure was, and I don't know whether joking or not, the nurse replied: "I don't know, I have never checked anyone out alive before."

Velda spent the day at her home other than to go shopping for some food and then came in the evening to stay with us because remodeling is still going on there.

Everyone noticed how much better she was walking and I was called in to show that she could even tap her foot (a little bit). That was a first.

(Sunday July 19, 2009)

Velda with us today. The morning care nurse that was supposed to start today called and said she was sick, so we will just keep her here with us today as remodelling is still going on at her home.

It is a laid back day with her going for a walk with Jean and sitting at the table and doing some art. We took started taking Velda to art club some weeks ago and all she could do was move a pencil back and forth on a paper to make some straight line marks in one place. On later occasions she was able to draw circles and now today she is copying an apple out of a book doing outlining with her pen, coloring and some shading. Not great - but a great advance.

(Monday, July 20, 2009)