Update on Mary
A note from Frank
The following is more a diary than a report. The paragraphs were written on the date indicated and reflect not only Mary's condition, but also my intuitive sense of her condition and progress. It is helpful in understanding how we have gone about the process of dealing with Mary's stroke. We both are very comfortable with making this information available to our friends. Feel free to ask any questions via e-mail or phone call.
2/10 2/6 Mary Deits experienced a bleed in the
left rear side of her brain. She was operated on within 5 hours of the initial symptoms
and the pressure relieved. Recovery from the acute phase has gone well and she is now in
the Ballard Rehab Hospital in San Bernadino, Calif.
The hospital was chosen because of its friendly atmosphere and proximity to our new location in Ridgecrest, CA. The main limitation is a lack of biofeedback at the facility. This will have to be addressed in the near future.
Most of Mary's functions are returning rapidly with speech and mental clarity being the slowest. This is to be expected given the location of the bleed and the short time since the event.
Mary continues to progress extremely well. She has full strength in all limbs and good balance. Her speech and mental clarity is returning rapidly.
She is scheduled to be discharged from Ballard next Tuesday. I will finally have an opportunity to look at her physiology and EEG, and start some biofeedback/neurofeedback work.
In a meeting with the Ballard staff she was refered to as "extremely motivated", "one great lady', and "a joy to work with". Of course these come from the therapist's who are flexible and willing to adapt. The rigid types have had other experiences!
Mary left the Ballard facility last Sunday and is at home in Ridgecrest, CA. She is doing very well. We are finally able to check her EEG and initiate feedback sessions. We are using the F1000 proportional system with 2 10 minute sessions/day. The results have been dramatic. I'll fill in more detail later.
Mary is progressing very nicely. We are finding some interesting things which may be based upon her extensive personal experience with EEG training. In spite of the severity of the initial event, she has not shown excessive slow wave activity over the site (or anywhere for that matter). We are also finding that one short 10 minute session on each site and frequency combination is all that is needed for her to make connections and move ahead. This has resulted in our actually doing very few EEG sessions in the last few days.
An intestinal flu slowed progress over the last several days. Yesterday was the first day we have been able to resume feedback sessions.
On the EEG front we have settled on working with a placement of right mastoid ref to a point centered over the center of the surgical area (roughly in the vicinity of P3-T5). Current sessions are using the Prop2 setup with the warble sound on 2-6 Hz and the harmonic on 12-16 Hz. Thresholds are /10uV and 2/4uV respectively. Sessions are 10 minutes long with temperature and EDR monitored but not selected for feedback. The first session on 3/13 showed a mean amplitude of 7.4uV RMS in the 2-6 Hz band and 2.0uV in the 12-16 Hz band. The second session on 3/14 shows 6.0uV in 2-6 Hz and 2.0uV in 12-16Hz. Significantly temperature in each session started in the low 80's and increased to 92 deg in both sessions.
Sorry to wait so long for this update. Mary's experience with the virus turned out to last over 2 weeks, making it difficult to work with EEG. It seems that the virus has finally moved on to inhabit some other unfortunate soul (hopefully not me!).
On 3/18 we were able to do a 10 minute session with a left mastoid ref to the P4-T6 area. This is a mirror image of the previous sessions. We also used 2-4Hz instead of 2-6Hz for the warble and 15-25Hz for the harmonic sound. Mean 2-4Hz amplitude was 4.34uV and mean 15-25Hz was 2.21uV.
On 3/23 we repeated the same placements and settings. Mean 2-4Hz amplitude is now 3.04uV and 15-25Hz is 3.19uV. These are major changes in a positive direction.
Mary continues to improve nicely. It is hard to quantify the changes as they are spread over a wide range of abilities. She is able to get around easily without help. She is upbeat and fun to be around. We both laugh at some of the little quirks such as putting the electric toothbrush in her mouth and then turning on the waterpic with exciting results for both of us.
We are also pursuing autonomic feedback to deal with the effects of "medical abuse" which invariably happen with intense encounters with emergency and intensive care experiences. I'll say more on this as it develops.
Mary continues make remarkable progress. We have been playing with a number of activities both for fun and learning. She has no problem playing "catch" with a foam nerf ball, even when I throw a fast ball to her right side. She holds her own with me in playing a game of balancing odd shaped blocks on top of one another. She has enjoyed hand writing words and sentences on a note pad..the skill is coming back rapidly.
We haven't found EEG feedback to be of as much help at this point. A couple of autonomic sessions with temperature/EDR helped regain some of her feelings around the initial stroke experience and we have had several very emotional sessions for both of us. The results are warm hands and a return to an active EDR together with a much more lively approach to life. This is an often overlooked part of recovery from major life threatening illness.
Mary's main limitation at present has to do with activities that are normally automatic in nature. Things which require thinking about are relatively easy to do. She will have a problem with something as simple as making a salad where the process is intuitive. If she takes a moment to explain to me how to make the salid, she can now go do it herself. She seems to be improving in this regard quite rapidly.
We have revisited EEG again recently. The placement has been left mastoid to the vicinity of O2. We are again using the proportional setup prop2 with filters at 2-4Hz and 15-25Hz. EMG activity seems to intermittently show up at this site (not related to neck or jaw) so the EMG warning sound is set to activate at around 3uV (35-55Hz).
Over several sessions we have found an interesting occurance with temperature and EDR. EDR will start out very low (0.7umho), flat, and unresponsive to stimuli, while initial temperature is in the high 80-low 90's. At around 3-4 minutes into the session, EDR will suddenly increase and become active. At the same time temperature will rise to 95-96. This lasts for 2-4 minutes and then returns to the previous levels. There is nothing noticeable in the EEG during the event.
On the first session, I continued feedback out to 10 minutes. Mary could not remember anything unusual happening during the session. On the next session, I terminated the feedback immediately when temperature started down with the idea that I wouldn't confound the experience with more feedback. Mary then reported images of hospital events and people involved with her care. We are continuing this approach as it seems somehow important.
It is interesting to note that we would have been totally unaware of these changes if we had only been monitoring EEG.
Time for another update. After several sessions using the setup described in my last update, Mary's temperature/EDR have become responsive at the beginning of most sessions. Interestingly, our daughter has reported that Mary's voice has changed and she is more assertive and sure of herself on the phone.
The last two days we have started another approach. Mary has been experiencing problems with bright light bothering her. She also reports a sense of visual uneasiness, but senses it as a positive indicator. I am working with the idea that the blind area on her right side may be returning to normal. She has shown a marked spectral peak at 7 Hz from the beginning which Tansey reports as "visualization". This may result from visualizing images to fill the missing scene. It is possible that as the blind area resolves, the two pieces of visual information conflict and cause the uneasiness.
As an attempt to work with this we are using the prop4a setup to encourage her to avoid 7Hz and pay attention to 24Hz. (I have found 24Hz to relate to "focus"..dont ask me for research!!). So far we have done one session each at right mastoid-Cz, and left mastoid-Cz. The sessions are eyes open with Mary paying attention to the ellipse turning green. During the last session (left side) I also asked her to track a laser pointer as I moved it around the border of the monitor, while keeping the ellipse as green as possible.
While this is a new approach we seem to be seeing results. She walked down the block tonight to our mailbox and found the uneasiness to be mostly gone.
In general Mary is doing very well. We are giving her time to recover at her own pace and support changes as they evolve with feedback.
We are back to the proportional setup prop2 with filters at 2-4Hz and 15-25Hz. with placement of left mastoid to the vicinity of O2. This site invariably results in marked improvement on the day after training. Temperature/EDR are looking much more "normal" based upon prestroke data. Mary mentioned that she found herself reading small print in a newpaper much to her surprise.
On 5/28 and 5/29 we changed placement to right mastoid to a point centered over the location of the bleed. The prop2 setup was set for 2-4Hz and 15-25Hz. Training at this site was perceived as "hard work". After the first session on 5/28, Mary experienced more disorientation and lack of coordination. Several hours after the session on 5/29, she commented on being able to see me coming into a room from her right side. A visual field evaluation showed sight on the right side where she was previously blind. Today, 5/30 she has experienced what seems to be a total return to normal sight. We saw a wide screen movie this afternoon without problem. She has repeatedly commented on how sharp and clear the world looks. The disorientation has disappeared and her coordination is good.
We are excited and see this as a major breakthrough.
Since the last report, we have been working with a Cz/P3 to T5 placement which is directly across the area of the bleed. We have tried de-emphasizing 1-4Hz, 2-4Hz, and 2-6Hz at various times. Focus was on 18-28Hz. (These are part of a new prop6 setup files available for download). Both 1-4Hz and 2-4Hz seem equally effective. Mary has reported an increased mental clarity after the sessions. Interestingly, she has not experienced any agitation often attributed to high beta.
In general, her progress is very good. She seems to go through a cycle of making a major improvement, followed by having it disappear, then slowly return permanently. We spent today at a sight in the Sierra Mountains of California. Mary was able to climb a rugged rocky hillside to view a waterfall with only a minimal amount of help on my part. It was great to get back to some of the activities we enjoy so much.
Mary continues to make progress in recovery. We continue to see a cycle of a short period of flat EDR, increased blood pressure, visual impairment on the right side, and sometimes cognitive problems. This is always followed by normal EDR, normal BP, and a large improvement in visual and cognitive function. Each cycle results in a new level of function. She is now using the computer to set up her own autonomic sessions on the F1000. She has also been reviewing the outline of a book she was working on at the time of the stroke. This also requires using MS Word to access files and scroll around in the text. This week I noticed her walking though Walmart with both hands in her pockets..an indication of confidence in balance and orientation.
We are in a stage where progress reports are more difficult. In general Mary's improvement continues although at a less dramatic pace. This is largely due to the time interval since the stroke. Her EEG looks a good deal like hers from pre stroke which is very encouraging. As new abilities return we support them with feedback sessions.
We had hoped to attend the SSNR, but it looks like it would be too much of a drain on both of our energies. We plan to attend the Texas and California conventions, which are more easily accessible.
Much has happened in the last month. The week of September 16, Mary flew over to visit our daughter in Tucson. She made the trip on her own including handling canceled and delayed connecting flights. Since returning she has become very confident and seems to be moving ahead rapidly again. Much of the cyclic nature of her progress has disappeared. Last weekend I gave her the chance to try driving on a deserted road. She found handling the car natural and confident with her right side vision the only problem.
We have explored the vision issue further. A visual field test by an ophthalmologist has shown that the main limitation is in the lower right quadrant. This promises to be a help in designing ways for her to go about tasks without the blind area getting in the way. Of course, we still haven't given up on it returning.
Now for the interesting part: for the last several weeks Mary has been using the Biocomp "Thinking Cap" HEG interfaced to the F1000. We have alternated training at FP1 and FP2 with occasional times at FPz. Mary has been able to control the feedback quite easily most of the time. Over this period she has made very significant improvement in almost all areas. While we really can't be sure if the changes are due to the HEG training or not, we are excited about using it and intend to continue.
We are also experimenting with photic stimulation in the lower right quadrant. The is the blind area shown by the visual field test. A flashing bright red light is sensed as a "feeling of warmth" and in the first few sessions as "an uneasy feeling". In the last 2 sessions the feeling of uneasiness has disappeared and she has seen a defuse light intermittently. This is not the typical photic stim in that we are not trying to entrain any particular frequency and in fact the blink frequency seems to make little difference. It is more a matter of making the light more noticeable. We are interested in trying colors other than red and I have the lights on order.
As should be apparent, we are excited and in good spirits. We will be attending the Texas biofeedback convention next month and Mary is looking forward to getting back into the biofeedback community.
Our use of HEG seems to have been an excellent choice. At the time we started its use, Mary's progress had slowed which was expected 8 months post stroke. Following the first few sessions, she started making rapid improvement in several areas such as vision and handwriting. Her cognitive abilities especially in clarity of thought and self confidence have improved dramatically. After a few days experimentation, we settled on 10 minutes each at Fp2 and Fp1 in that order. Recently we have eliminated the Fp2 portion. This seems to allow her to focus fully on the mind states which influence HEG on the left side. At this point we have not used EEG for at least 2 months as the HEG seems to be much more direct. I suspect we will try EEG again in the near future more out of interest than need.
We also did one session of temperature/EDR which resulted in Mary's "getting in touch" with some of the medical abuse in ICU. After an intense session in which she relived the pain and confusion of attempts to get an IV needle into a vein in her hand, her hands warmed from room temperature to the high 90's. EDR moved into a healthy range. Significantly, her intermittent hypertension disappeared.
So where are things? Mary has made major improvements in the last several weeks. She was able to attend the Texas and Calif biofeedback conventions and enjoy interaction with friends. As recent as last week her ability to write has made unbelievable improvements. Her energy is pretty much back to normal.
It seems that the idea of a "6 month window of opportunity" with a stroke is rather arbitrary. After 9 months Mary continues to improve rapidly.
Just a brief update is in order. Mary's progress still continues to amaze both of us. She has asked me about a number of things that have been simply too much to discuss in the past such as the operation of our accounting software. She asked me to drop her off at the supermarket to shop for groceries on her own. She has been able to write notes on Christmas cards.
Mary has also been very interested in what went on during the week or two following the stroke. My feelings, her reactions, medical decisions, etc. have been a topic of discussion in our evening time in the hot tub.
Another milestone. Yesterday, Mary drove me around town on errands and was able to handle the car without difficulty. Today she drove home solo after I picked up a rental car for our Christmas trip. She is feeling very good about the experience.
It's been a long time since an update. A lot has happened since December. We exhibited at the Future Health conference in Palm Springs where the whole thing started. Mary was able to enjoy hanging out in the same area where she experienced the stroke a year ago without any feelings of uneasiness.
She continues to make very noticeable progress even at this point in time. Her energy has returned (in fact exceeds) prestroke levels. We have done less feedback training in the last month as it doesn't seem necessary. One interesting approach we have experimented with is to focus visual attention on HEG feedback, while simultaneously listening to auditory feedback of the EEG. The HEG was at Fp1 and the EEG at left mastoid to P2. Filters were 2-6 Hz and 18-28Hz. The day after the first session Mary experienced a major improvement in awareness and self confidence. Her walk is faster and sure. As usual there is no way to directly associate the changes with the feedback work.
Several new and exciting things have happened since the last update. A couple of weeks ago we had a followup visual field test (see 9/30/99) with major improvements evident. This is particularly interesting as the ophthalmologist who ran ran the earlier tests said that Mary had regained about all that could be expected! The second test was run by a different Dr but on the same instrument model. Mary has embarked on a series of vision training exercises to improve coordination of her right and left eye.
She also announced this week that she is ready to drive around town on her own and has made a number of trips to shop and visit friends. She is very excited and feels positive about where things are heading.
Wow, it has been a long time since the last update. Things have really moved along. A lot of the progress has involved vision improvement, faster processing of information, and general integration of the many functions that have returned.
In late May Mary's mother died suddenly. Mary handled the situation very well.
We leave for St Paul on 9/16 to attend SNR. Hopefully after our return I can post a more complete report. Mary and I have been thinking about writing something on our journey. The plans are in the early stages.
A quick update after our return from St Paul and the SNR conference. Mary found herself able to drive on active interstate highways and on the return trip handled several hours of intensive driving. I am a very critical passenger and was able to take a long nap without concern. She has also experience a major perceived increase in vision. We haven't had time to do a visual field test to determine if this is the area of improvement.
Mary has also gone through re-experiencing the fear and confusion of having the stroke at Palm Springs. This may have had a major effect on her confidence and ability to drive.
Exciting new things are happening.
Over the Thanksgiving weekend we visited our daughter in Tucson. While there Mary had a follow up visual field test (see 5/5/2000). She has again shown significant improvement.
One of the few remaining limitations Mary has experienced is difficulty in writing. Motor skill is not the problem. It has been more related to remembering and spelling familiar words. A few days ago she mentioned on awakening in the morning that she thought she write again. She excitedly went to the desk and started addressing Christmas cards. Over the last couple of days she has added notes to the cards and can now write her thoughts without constant stopping to figure out a word.
It just keeps getting better. Mary has been visually stimulating her lower right blind spots by blinking a red LED light positioned in the area. This isn't EEG mediated photic stim, just a manually controlled light. She has been experiencing the light as warmth in this area, but has not been able to see it. Last week it started appearing as light. This has resulted in a major improvement in her vision.
Her ablility to write has greatly improved and she is getting the urge for us to do a workshop so she can start sharing her ideas again.
As I noted elsewhere, we are taking time off from exhibiting at conventions to give us some time to enjoy ourselves. We have a new 4WD we are fixing up for camping this summer and have already spent time at the Death Valley Sand Dunes and hiked some local canyons. It feels like life is returning to normal.
Today has been exciting. Mary's vision has shown another major improvement. She returned from driving downtown and said she felt her vision was near normal. Interestingly, our grand daughter in Tucson when told of the change said "Oh! I knew that..she could bat a ping pong ball back even when I sent it to her right side" . We had visited Tucson over this last weekend and it seems she was testing Mary!
I hadn't realized so much time had passed since my last update until several of our many friends started asking questions. So much has happened since February! Mary is now in the midst of writing a book about her experience. We started by getting her a small digital dictation recorder so she could record her thoughts easily. The idea was to have the recordings typed for her. She decided to start listening to the recordings and attempt to type them into the word processor herself. It was slow at first, but things have progressed to where she is adding and revising as she types. She is now riding a bicycle several miles with me most days and is finding it well within her abilities. A few weeks ago she drove 90 miles on a solo trip and enjoyed it. Her sight is improving (I have written a visual field test so we can track her blind spot) to where there is only a limitation in the far lower right quadrant. In general life is getting back to normal.
This is what we have been waiting for. Mary decided it is time she post something in her own words!
A Note from Mary
It is time to personally say hi. The past two plus years have been very exciting and an extremely valuable learning experience. I have learned more than I ever could have imagined! Seeing how the mind and body have so much wisdom and are working for me. It is only a matter of listening and following. Sounds simple as I look back. Being so consumed in the dynamics it has not been a matter of figuring out but just participating.
Thank you all for your support and participation these many months.
Now I am beginning to look at writing a book. I am in the stage of organizing my thoughts and learning to write them down. Finally cognitive thoughts are becoming recognizable written words so I can share my experiences in writing as well as speaking.
I have a unique perspective as a therapist who is recovering from a stroke. An added dimension is having spent over forty years in personal growth. These all add up to an enthusiasm to share what is and has taken place. This includes the intuitive process of healing as well.
So my spare time is exploring how to share all this in a meaningful way with you over time. You will hear more from me.
More from Mary
Many things are happening. I have learned to write on the computer. Last March it took half an hour to write two sentences that were not garble while now I have the freedom to use the written word. Recently I had great joy when I could write my granddaughter's name...Gwen. Very simple you say. Those four letters must have been very close to the area of injury. I could read them and say them. The connection in my head came out as garble. This had been an area of sadness for me. I look forward to celebrating with her at Thanksgiving. A new found joy.
When talking to some of you, you have been taken back by how I sound so "normal". Fortunately that part was not affected by the stroke and has been intact. Looking at my cat scan I am amazed and sometimes rattled at what I see. It is hard to connect that image with that being me.
Two and a half years after my stroke significant changes are still occurring!!!. As I put my notes together I find I want to share these experiences in writing. Yes, some type of book is evolving. I have a unique vantage point of being a therapist and recovering from a life threatening stroke. As many of you know my life perspective is an awareness model. It has nurtured me through these many months...stimulating my curiosity and giving me hope.
As connections are happening I am learning more about the wisdom of the mindbody and how it knows what I need at any moment. I go through periods of expansion in learning and trying on new activities such as learning to ride a bicycle. It is followed by a time of contraction that would appear to be regression. Bike riding became cumbersome. What I have discovered is these slow times allows for the reorganizing and establishing of permanent connections. It is a time of integration and then I move solidly forward again. I sense an "aha" when there is a significant integration as many pieces of a puzzle filling in at one time. Like the bike riding returning with greater capabilities and freedom to glide through the streets. These times of learning cannot be forced. I sense this has to do with the wirings making reconnections. My role is to find the edge of this learning activity and live there until connections take place.. This is not difficult when paying attention or living in a state of awareness. Then it flows naturally and I only need to participate in the movement.
An extension of this has been becoming aware recently of the return of many higher cognitive abilities. One complex task at a time has been my mode of operation otherwise I get confused.. Now I find myself doing multiple tasks such as preparing a complete meal. No longer do I fix one item at a time! I can coordinate a complete meal. I am seeing this in other complex activities as well.
Enough for now. I want you to feel free to contact me as I can now even do Emails.
Welcome to the new year. Time for another update. Less than a month and it will be my 3 year anniversary since having my stroke! I marvel at the healing process so much has happened and is still changing! Cognitive capabilities are still returning.
After about 10 days of studying for Calif. drivers license I took the test in mid Dec and passed! So great to have this ability again. Another freedom has returned. I thought I had most of the ideas for my book in mind. With the recovery continuously occurring I am not sure I can wait for the full extent of my recovery to write the book.
As many of you know awareness has many levels. I have spent many years of my life cultivating them. Now I am becoming aware of subtleties returning. As they emerge I feel another dimension of healing is occurring. I sense being more whole. Each one of these events is a stimulus or motivation to notice what may be around the next corner. Life is not dull.
We are planning on seeing some of you in Las Vegas in March at the AAPB convention.
Until then, Mary.
It's time for an update from Frank!
I recently requested the original CT-Scan taken at the time of Mary's admission to the hospital in Palm Springs. While I reviewed it at that time to make a decision on authorizing surgery, I did not have time for a close study. Looking at the scan now brings back images and feelings of that time and my realization of how serious things were for Mary. Closer study has made both of us aware of how remarkable her recovery has been. The blood mass was extensive and there was considerable deviation of the centerline of her brain. I will try to put a copy of one of the scans here at some future time.
Now for the present. The most gratifying and frustrating issue for us both in the last month or so is Mary's return of subtle high level functioning. I never quite know when to help and when to stay out of the way. Another interesting observation is that Mary's ability to express herself in writing actually seems better than pre-stroke. She is very excited about writing a book about her experience. I am staying out of the way and giving her the space to do it her way (if you can believe that!).
I am often asked what we did to bring about such a remarkable recovery. Did we use biofeedback, nutrition, physical therapy, or voodoo? The best answer is all of the above and none of the above! We used various biofeedback/neurofeedback modalities, but probably not in the way most clinicians would be comfortable. Nutrition was determined more by Marys sense of what she wanted than any recommended foods. In fact chocolate, sugar, and salt are an important food at times. Physical therapy consisted of keeping physically active including weeding the yard, walking, bike riding, and any other activity that seemed enjoyable at the time. I won't elaborate on voodoo!!
Seriously, some of the most important
aspects of the recovery process have been subtle and hard to define:
1. Marys motivation. From her first return to consciousness she was interested in moving toward wellness. She had a realistic attitude and was willing to accept limitations if they were part of her condition.
2. Willingness to risk. This started with making surgical decisions that stressed minimal invasiveness even where it increased risk of another bleed. It included rejecting antiseizure medications with the risk of possible seizures. We also left the rehab facility against medical advice to give Mary the freedom to pursue her interests. Many other decisions were made with the same willingness to risk potential problems in the interest in moving ahead.
3. We looked for ways for Mary to enjoy each new function as it returned rather than pursue a planned course of rehab.
4. We laughed a lot at her attempts in the early stages.
There is much more, but I will leave that for Mary's book.
Yes, progress is still happening! In mid April I made a solo driving trip to Tucson. Imaged it for several weeks. Finally I knew it was time to do it. I stayed off the interstate when feasible. It seemed so frantic for this woman of leisure. I gained more confidence each mile I traveled. The return trip home I was more adventurous. I took interstate through Phoenix and through Southern Calif. Old familiar driving memories were well established again.
Have observed more subtle vision returning. A recent visual field exam validates this. I go through a cycle of bright daylight being uncomfortable and disorienting for several days. Then as the discomfort subsides my vision seems to have greater clarity. This seems to be the pattern with each improvement. The ophthalmologist told me there is a study of visual returning seven years out from a stroke. He is reservedly enthused with my progress. Healing has its own time schedule. I am the observer.
Am steadily working on my stroke book. It is gaining more shape. I am finding it is a real healing journey as I relive my experience.
Recently I have had more emotional extremes. With more cognition returning I think more complex emotions are also returning. Frank says I act like a young teenager with my mood swings. The physical stages of change are less obvious.
Your teeny bopper, Mary
When Frank and I gave a presentation at the Colorado state biofeedback meeting, I discovered how much I have recovered mentally. Being around other professional people was a reality check. So much of my time has been with family and close friends.
For the past ten months I have become aware of cognition returning. At the meeting it became very evident to me especially by the questions and interchanges.
Recently my thinking ability is returning like being in a continuous lightening storm without pausing to regroup before the next lightning strike happens. I am focusing on not overloading on what is returning. Learning to sort, understand and discriminate has taken on new meaning for me.
Simple tasks are combining to make a complex task possible. Sometimes I do not recognize the implications. This is an area where I am putting my attention. Deciphering implications. There are gaps in getting the connections back. Looking at it I see obvious uneven learning. This has been affecting my writing the book. I am flooded with complex thoughts streaming through my mind. These confuse my simple story line. Learning to discriminate my thoughts and still follow a thread for the book is another new learning.
Complex emotions are returning. Frustration is one example of moving away from the simple emotions of the first three years. My responses now seem to fit more closely with later developmental stages.
Noisy or busy environments have been confusing until recently. This has become much less of a problem. I think this has become possible with my having more cognitive hookups. Until this fall I had avoided crowds. The stimulation was overwhelming and exhausting. Hope some of this helps you understand what some of your head injury clients experience.
Recently I saw the video of our presentation in Colo. I was impressed with how well I did in speaking. More connections were made as I saw and heard myself. This has provided a validation of how well I am doing. Looking in an objective mirror has given me more assurance of my mind/body connection. I now feel more motivated to move along with the book.
So much is still coming back. Enough for this installment. This may answer some of your questions and produce more for me to respond to.
In health and healing,
Yes, I am still writing the book about my stroke experiences. In January I was unhappy with what I had written. As you might guess I have been rewriting it. I have given excerpts to a few writer friends to see if I am on the right track for the average person to understand. Feedback has been positive. With more cognition returning I think it will be a more interesting book. Frank is doing my initial editing. We are about two-thirds through the first draft. We are going to self publish. This means spending time learning new skills.
One side note is I am becoming more clear and articulate as this year is progressing. My head injury is getting more specific in location over these many months. Two areas that still impact me are my spelling and having difficulty in connecting to a word I want to use. I know the word yet something is missing in writing it. I regularly spend part of my time with this disconnect.
Another part of my recovery is the cyclic nature of my capabilities. Early on I had to recognize I was not backsliding. I learned it was and still is a time of regrouping before the next surge of recovery. My writing slows to a trickle during those times.
Writing this book is part of my therapy. Healing takes time and I have learned so much. As I told my eye doctor I have had a four-year residency in healing and the intricacies of how the mindbody work. There is hope for all of us. We just need to learn ways to tap into what our bodies can do. The 90s was the age of the brain. Now we need an age of bringing the human perspective to science. I am more than parts and labels. I am more than a stroke person.
We are going camping, traveling and visiting family. The writing will be secondary to the joys of opening new horizons during the trip.
New connections are still occurring. This is five years out from the stroke. I am happy to report I have become aware of more higher mental functions returning since the first of the year.
While attending Future Health’s Winter Conference in Palm Springs I was able to sit in on presentations and follow the technical information that was being presented. That had always taken effort but since the stroke it was more difficult to sit that long, let alone follow the thoughts. I soon became aware I was tracking what was being said. My higher cognitive skills had returned. I realized it was no more effort than before my stroke. This time around I appreciated sitting and understanding from a new perspective. When I recognized these connections I enjoyed listening as well as understanding what was said. At the same time I discovered I was entering spontaneously into very thought provoking conversations. I was excited with another piece of my healing falling into place.
At the conference one therapist stopped in her tracks when she saw me. I had seen her a year and a half earlier. She indicated I had changed so much since our last meeting. I was my old self again. These periodic encounters over the last five years have confirmed my internal awareness. My book is another piece of my knowing how much mental healing has happened.
These insights and connections really motivate me. I am having more thoughts of what I may do since finishing My Exciting Stroke. The feedback is very positive. Families are starting to email us with their stories and questions about strokes. These inputs are exciting. Here again I am putting into practice how to keep my eye on the journey not the destination.
I am collecting a file on responses to my book. We welcome your comments.
A Note From Frank
Completing Mary's book has given me a new perspective on what we have been through the last 5 years.
One of our favorite recreational activities over the years has been exploring the back roads of the desert southwest in our various 4 wheel drive vehicles. The road is usually challenging and rough... sometimes hazardous. At times we find ourselves stuck..buried up to the axles in sand or hung up on a rock. No matter how impossible the situation looks we go to work to get moving again. Usually a bit of digging, a carefully placed rock or two, and some other tricks and we are on our way. Often the journey turns out to be more exciting than the destination.
Our experience with Mary's stroke has been such a journey.