Dear Friends and Family:
Well here it is, the end of August (actually, September first as i post this), and I’m finally getting around to my promised “early August” entry for Elly’s Journal. I hope everyone is enjoying this summer season as it rapidly comes to an end. Several of you have been inquiring via phone or email if all was OK because you were expecting a Journal update. Mea culpa, I apologize. A lot has been happening in our lives over the past 7-8 weeks. The good news is that all is well and Elly continues on her long journey towards what we pray will be complete recovery. Overall the majority of this journal entry is great news, though we did have a couple of frightening experiences. Both resulted in ambulance rides to the ER at Hartford Hospital. The first of them, on July 26, was for a second syncope episode; and the second, on August 5, was for high fever (101.5) and extreme weakness along with a likely UTI. The ER confirmed both the UTI and a systemic infection (bacteremia) secondary to UTI. For this, she was admitted for what became a 4-day hospital stay with iv antibiotic treatment daily followed by oral antibiotic for 7 more days upon discharge. Thankfully, with G-D’s good graces and outstanding help from the Tolland Ambulance crews and Hartford Hospital doctors and nurses, for which we continue to be ever so grateful, both these events seem to be well behind us now and, from what the doctors all tell us, and are highly unlikely to be even remotely related to the aneurysm, hemorrhage and stroke. I will explain more below but first lets focus on Elly’s current status, which is the most meaningful, important and uplifting news.
Elly has recovered from the majority of the effects from the first syncope episode and the associated bruising and swelling from falling on her face which I described in the July entry. Most importantly, any setbacks that occurred in her aneurysm/stroke recovery caused by that event seem to be long in the background now, and Elly has caught up with and far surpassed her stroke recovery status at the time of the syncope episode on June 21. Even the BPPV (positional vertigo) that resulted from the impact of her head hitting the floor, is just about gone. We still continue the Epley maneuver each night as a precaution since it still causes some very brief dizziness that lasts a just few seconds now. This is in stark contrast to Elly’s response to Epley treatment in the days immediately following the injury. At that time, Elly would experience severe dizziness just from turning her head to the right when in bed, and with the Epley maneuver the same would occur with several of the moves. She would also be left feeling very uncomfortable (head “didn’t feel right”) for quite a while after the maneuver. Thankfully, this is now a thing of the past and Elly has gained much more confidence and stability. She is careful not to turn her head too quickly just as a precaution, but there has been no more vertigo for some time now other than the very brief (seconds) dizziness felt during the Epley therapy.
Elly has continued to work very hard in rehab since my last journal entry. For quite a while we were making many trips a week, sometimes two or more a day, to the Hartford Health Care facility in South Windsor (about 15-20 minutes away). She “graduated” from both speech and occupational therapies a few weeks ago and on this past Thursday, 8/27, “graduated” from physical therapy. These are major achievements because they signal that all medical goals, which were originally defined for the professional therapies have been met or exceeded based upon rigorous professional assessments. Of course, all the homework that she has been doing for all three therapies will continue for the foreseeable future, as they continue to be an important part of the long-term recovery process. Elly’s doctors emphasize this at every visit. As you have heard before, this recovery is expected to take at least a year and may continue beyond that. During that time the brain has to “grow up” again, like it did since birth, with respect to developing and maintaining new pathways and nerve-muscle memories to restore lost or diminished functions. This is a continuing process and I note new achievements and improvements on a regular basis. When family or friends visit after not seeing Elly for a week or more, they always comment that they see big improvements in Elly’s appearance and function. I’m happy to report that we have stored the wheelchair, and the walker will also be moved to storage very soon, as it is now rarely used. We have been keeping it within reach in the bedroom should Elly feel a bit unsteady immediately after getting out of bed during the night. She mostly uses a cane for such maneuvers now. These represent major achievements and significant improvements in our lives. For me it means freeing up space in my trunk with the wheelchair gone, and no more schlepping the walker everywhere. Now, Elly walks around inside the house mostly without her cane. Outdoors, she has progressed from walking with the cane, and with with me close by, to walking by herself while using, but often just carrying, the cane as a precaution.
We started the outdoor walks together to get the mail and newspapers several weeks ago. These are delivered to the end of our long driveway. As Elly gained confidence and her balance improved, I somewhat reluctantly agreed about two weeks ago to let her go it alone with me watching anxiously and ready to run if needed. It began with me staying on the front porch as she handled the stairs and walkway and our uneven driveway by herself. She soon did so well that I instead would stay indoors and check on her from a window. Even though we see and talk with Shari and Lisa regularly they don’t get to see this. I sent a short video to show off her success about a week ago and everyone was excited to see her amazing progress. Today, I’m proud to say, Elly goes it alone for the papers or mail so long as I’m home. At this point I no longer watch anxiously. She alerts me that she is going and I continue whatever I’m doing while listening for her return. This has added a new dimension to our lives, giving her a modicum of independence and certainly boosting self-confidence. I should note that about a month ago we installed a special unit on our security system that will receive a signal from a pendant that Elly wears in and around the house. Should she get into difficulty all she needs to do is press the button on the pendant and a signal will go to alarm central. They immediately call the house and if they don’t get an answer to cancel the call they will immediately call for an ambulance. With this in place I have more piece of mind and allow Elly to stay alone when I go out for appointments or errands. This too is a major step forward for both of us. We are so grateful to the very many volunteers who answered our emails for many months to cover for me so that I could go out while Elly stayed at home. Elly misses seeing you but it is certainly a lot easier now that we don’t require such coverage.
This past week we have begun taking short walks together beyond our long driveway. The first couple of times we walked to the circle at the top of our street and back to our house, a distance of approximately 800 feet round trip with a modest incline. Then we tried extending the walk by passing our house on the way down the hill, continuing down to the next driveway below ours. This added another 200 - 250 feet to the round trip and increased the challenge because of the steepness of the road going back uphill to our house. A couple of days later we were walking and talking and realized that we had passed the next two driveways below us. We looked at each other and agreed to keep on going, secretly hoping that we would be able to get back up to our house (yes, it is that steep). The past few days we have walked to the top and then all the way to the bottom and made the climb back up the hill, for a round trip of almost a quarter mile. We walk now at a good pace though the climb up from the bottom is a challenge for almost everyone on our street, even the runners. This exercise is very tiring for Elly and she usually rests afterwards. I should note that she does carry her cane along but rarely uses it as it should be used, except on the steep climb where it helps significantly, not so much for balance as for leverage IMHO. Today we ventured even further by walking along the intersecting road for about 10 minutes before heading back. This road is level for quite a distance but we did not go too far because our hill is always waiting for us when we are down there. In my view this is a phenomenal achievement and I attribute it to Elly’s dedication and hard work and of course to the tremendous support and expertise of the three outpatient therapists (Janice – speech therapy; Scott –occupational therapy; and especially Caitlin – physical therapy) who have worked so closely with Elly since June at Hartford Hospital’s Health Care / Rehab facility in nearby South Windsor, CT. For those of you who don’t know the area, this is much closer to our home than Hartford Hospital or the Mount Sinai Rehabilitation Hospital where Elly consecutively spent her first six weeks after the hemorrhage / stroke on 3/11. We also have had appointments with Elly’s rehabilitation doctor, Dr. Monti, and neurosurgeon, Dr. Killory, at the same location. This really is much more convenient given all the different appointments we have had over the past 8 weeks.
So, what else has been achieved since the previous Journal entry? Well, Elly’s speech is almost completely back to normal from the listeners’ perspective. Elly however says she still occasionally feels like she’s talking with cotton or marbles in her mouth. She senses this even when she’s not at all tired, but most of the time I can’t detect it. When she gets tired two things become patently obvious; first her eyes start closing and second her speech gets a bit slurred. Those are always good cues that its time for a break. We anticipate that this too will pass with time and more practice. Her doctors have said that she should be the judge of when its time to rest, but stressed that rest without distractions is still very important to the continuing healing process. She can now whistle a little but admits that she never was a good whistler. She actually startled me one day when we were heading out in the car and all of a sudden her whistle started to work. We both laughed. I never know what she will decide to practice when I’m driving but its fun for us when something new works for her. Another dramatic difference since the last report is that her facial expressions have returned more towards normal. There is much less evidence of right side drooping. I have included some pictures from our belated anniversary brunch with the family that was on Sunday July 26 at the Altnaveigh Inn. Those of you on FaceBook with us may have seen them already. If you take a moment to compare Elly’s smile in these pictures with those posted on July 6 or earlier you will be able to see the dramatic improvements. Indeed, Dr. Ollenschlager said that her facial recovery is such that a nonmedical stranger would not detect any drooping on the right side. As with other outward stroke effects the facial droop shows more when she’s very tired. To me, on most days her smile is as beautiful as ever.
Elly’s eyesight has improved substantially, though it still gives her trouble. We have about another 1 – 2 months to let the natural healing continue before she visits the ophthalmologist again to determine what, if anything is next in the vision department. The gel drops and evening gel for her right eye have made a big improvement, though on occasion she is bothered by tears running from the affected eye. Blinking is more synchronous with the left eye now and that too should continue to improve and diminish the irritation.
Yesterday Elly walked easily up our staircase to the second floor because she was determined to find something she was convinced was in our walk-in attic. After about 15 minutes of searching through folders she found what she was seeking, a document form 11 years ago whenthe house was built. Elly knew almost exactly where to find the information. I had looked in the same places about a week ago and completely missed the list. Clearly her memory is good. She easily handled the return trip down to the first floor (3 stairs down to a landing and 90 degree turn then 11 more stairs to the bottom). Just today she went down the 13 stairs to our basement to retrieve one of the cat carriers for a trip to the veterinarian. This is all good news as she shows more confidence and abilities.
Elly’s manual dexterity continues to improve and I would call it excellent now. Her biggest challenge in this and the walking arena is to rebuild her strength and stamina. She was bed-ridden for 3 weeks straight after the hemorrhage and stroke and then spent the majority of the next 3 weeks at Mount Sinai Rehab Hospital mostly in bed resting between her 3/day rehab sessions. Once home, she has been doing more and more each day to gain self-confidence, improve balance and coordination, etc. We will be exploring some fitness opportunities to help with this. Of course, Elly can’t wait to get back to Zumba classes, but I think it is still a bit too soon. Most likely it will not be too long. I must admit that it is great to see her doing things pretty much on her own now. This includes making coffee, cooking breakfast sometimes her own and sometimes for both of us, helping with laundry and some cleaning, doing dishes, cleaning cat litter, shopping in the market, etc., etc. She does it all on her own initiative. She is fully capable of caring for herself now, e.g., showering, dressing, handling email and regular mail, helping with financial matters as well. On her ipad and computer as many of you know she is back to her Candy Crush and Words With Friends games, and from what I hear she is back to winning some matches. These things are all a tremendous relief for me, and a great sense of personal achievement for Elly. Her doctors and therapists emphasize this over and over to her, and keep reminding her to look at how far she has come in such a relatively short time. This is much better than dwelling on how different things are compared to life before the hemorrhage / stroke. Indeed, the differences between pre-stroke and now are minuscule compared to a few months ago. I notice that now when Elly talks with people she sounds more excited about achievements and has indeed cut back on her earlier immediate response - “I still don’t feel like myself”. This is definitely a very good sign and a big relief for me. We now go out regularly with friends and relatives to dinners and shows and Elly takes part fully in conversations, decisions, etc. However, she still tires easily so we have to balance things and make sure we don’t overdo it.
Elly has been asking about driving again and is anxious to do so. Both Drs. Monti and Ollenschlager recommended that this wait perhaps another three months. I suggested doing some off road trial runs in an empty parking lot just to help her along this path. Dr. O indicated that this was a possibility but he will want to see her formally evaluated before getting behind the wheel on the road. There are at least two such programs offered that are about 45 – 90 minutes from us. Right now she is sometimes still too focused on a narrow target rather than scanning as one has to constantly do while driving. I have noticed this changing for the better as we have started the outdoor walking. I do much less coaching about obstacles in her path but still point out things to see around us. Caitlin was doing this in PT with Elly and I have followed her example. It gets Elly into the habit of scanning her perimeter to be more aware of surroundings. Indeed, in the car just the other day we were at a stop sign and for the first time since I can remember she looked to her right and told me that it was OK to proceed, without my asking for assistance. She is now doing this more regularly and this signals to me that she continues to grow her “situational awareness”. We have been working on this together when walking or riding by me asking her what she notices as we are moving along. She is definitely no longer isolated in her “own zone”. This should help when it comes to driving. The doctors are encouraging and indicated that such functions develop later in the recovery timeline. They continue to be optimistic that this will keep improving with practice. They urged Elly to be patient and “give it time”.
This past Wednesday we met with Dr. Ollenschlager at the Hartford Hospital Stroke Center to review Elly’s progress and to discuss the results of the July 13 follow-up angiogram. We viewed the images from the CAT scans of the brain which showed the platinum coils that closed off the injured vessel and also saw the intact vessels as they were revealed by the injected dye. The pictures also revealed that the injured vessels that had been blocked with the platinum coils had remained closed and that there was no ”back door” flow downstream of the blockade. In Dr. O’s words, “This is what we were looking for”. He was extremely pleased with Elly’s recovery to date and he encouraged us to keep up the home exercises. He noted that the more Elly begins repeatedly doing things that she wants to do, the sooner her movements and organizational behaviors will fully develop and become more refined. This endorses the time-honored adage - Practice Makes Perfect.
So, from all perspectives Elly’s Journey continues ever forward on its long and sometimes tortuous path. The two latest ambulance/hospital trips become less significant as time passes and improvement continues. However, we still have not identified the cause of the two syncope episodes. Elly’s doctors continue to stress hydration and salt intake and have recommended that Elly try to get by without a medicine she has been taking for years to help control her Meniere’s disease. Elly has been in remission from this terrible vertigo disease for many years. It seems strange that this drug may have contributed to the recent syncope episodes since she has not experienced syncope during all the years she has been taking it until very recently. It is a diuretic and can lower BP, which could exacerbate a vasovagal effect in syncope. She did have a very brief episode during her first week at Mt. Sinai in early April but had not been taking the Meniere’s medicine since she was admitted with the aneurysm on 3/11. She has now been without this drug since the syncope episode on 7/26. This past Friday we visited with Dr. Kveton in New Haven, CT who specializes in Meniere’s and has been treating / monitoring Elly for many years. He agreed that stopping the drug was appropriate given all circumstances. Hopefully, this will not awaken the Meniere’s. I personally, think we need to look beyond this drug for the cause and will be communicating this to Elly’s doctors. She has seen her cardiologist for consultation on this issue. The examination, which included EKG, echocardiogram and a 24 hour Holter monitor did not provide any cardiac-related explanation for the syncope. Elly’s BP tends to run lower than the norm and this has not noticeably changed with cessation of the drug.
July 26th was our belated 50th anniversary brunch as noted above. Shari, Lisa and Joe sponsored a wonderful event and Madison, Chandler, Jeremy and Casey were there to help us celebrate so many wonderful blessings and years together. Betty and Barbara, Joe’s mother and aunt, also joined us for the celebration. The pictures posted with this entry were taken right after brunch in the gardens of the Altnaveigh Inn. We went back to our house for a while and had a wonderful day together. Everyone was gone before 6pm. All was good, or so we thought ☹.
The real excitement began around 9pm. Elly called out to me from our bathroom as I was walking by the door. She said she was hot and perspiring and not feeling good. I was trying to help with a wet cloth applied to her neck and face. No sooner had I started, than Elly stiffened, her legs extended and became rigid, and her eyes went into a blank stare. She became completely unresponsive. I was able to keep her from falling and I ran for the phone. When I returned just a few seconds later, she began to come around. She heard me say “…need an ambulance” and insisted that she was fine and didn’t want one. Too late, they were already on the way. Her pulse was weak and according to one of the first responders her BP was very low, but not dangerously so. By the time she was on the gurney she was coming around and her color had come back. Elly had no recollection of blacking out. She remembers calling me, and the wet cloth being on her face but had a hard time accepting that she had lost consciousness, perhaps just for a minute. So, here we were again, with Elly off to Hartford Hospital. The EMT’s felt that this was best given her recent history of stroke, etc. The rigidity brought to mind her earlier syncope episode. That time I found her on the floor face down and fully extended. I characterized it in the last Journal entry as “fallen like a plank”. I was worried that the rigidity may have been some sort of seizure but have since been reassured that it was very unlikely. Indeed many health professionals have told me that some people go rigid during syncope while others just go limp and slump down. Madison accompanied me to the hospital and we spent most of the night in the ER. We left Tolland around 9:15 pm and got to the hospital not too long after the ambulance had arrived. Elly was already in triage and ekg was normal. By 10 pm Elly was moved from triage to another room in the ER. After some iv fluids and several blood tests among others the ER team concluded that this event, too was most likely another vasovagal syncope (fainting) episode. We spent 5-6 hours in the ER before coming home around 3am with instructions to hydrate, hydrate, hydrate, and consider stopping the Meniere’s drug as mentioned above. We were also instructed to follow up again with Elly’s GP and cardiologist. We are now in discussion with the GP regarding further cardiology consults.
Elly’s second ambulance ride since the last journal entry occurred on Wednesday August 5. When we awoke in the am Elly seemed to have some trouble getting out of bed. Once up she used the walker and soon all seemed well. We thought that perhaps she just didn’t give her body enough time before standing. She cooked her own breakfast and we were off for a PT session. There too, I noticed that Elly did not seem up to par as she was having difficulty with some of the exercises that she had mastered previously. She insisted she was OK and that we should continue with our plans for the afternoon. The plans included me dropping her off at Ron and Susan’s House for lunch with Brina and Maddie while the four husbands went to see a movie (Mission Impossible 2 – not great IMHO). She seemed fine when I left her. However, on my return I learned that she barely had eaten anything and just wanted to rest. She was still asleep and seemed very week when I woke her. She was able to walk to the car with my help and wanted to go straight home to rest some more. Instead I took her directly to her GP’s office, where I was told that they were too busy and we should go to a walk-in clinic or an ER. I persisted and they agreed to check her BP. The nurse noted her BP was unusually low and then found her temperature to be 101.5. A urine sample revealed a UTI. When the nurse came back to tell us about the UTI she announced the ambulance was outside waiting to take Elly to Hartford once again. She was aware of Elly’s history and apparent fragility and had called for the ambulance upon confirming the UTI. Turns out she made the correct call. It was about 4pm as I followed the ambulance, alone this time, to Hartford Hospital. Further testing in the ER revealed the bacteria (E. coli) causing the UTI had spread to her bloodstream (bacteremia). She was given iv Cephtriaxone and admitted. I stayed with her in the ER until a room became available on a medical floor. Around 10:30pm she was moved to her new room and I left after she was settled in around 11 pm. When I spoke to Elly by phone on Thursday am she sounded like herself again. She felt good and it was clear that the first dose of antibiotic had quickly had an impact. They quickly had her up and walking the next day. On Saturday she got her 4th iv antibiotic treatment and was discharged with a prescription for cephalexin capsules, for 7 days. At one week after completion of the latter treatment Elly went for another urine test and that revealed some residual infection. Last week she completed a second round with a different oral antibiotic and will likely have to have another test at the end of this week. Hopefully the problem is now solved. Most troubling in all of this is that Elly was for the most part symptom free until the organism had entered her blood. She had none of the usual signals of UTI. The team in the ER, to their credit concluded very early on that the problem was likely a bacteremia secondary to a UTI. Ultimately the infectious disease group confirmed this with clear evidence of the same organism in both blood and urine.
As is evident from the first part of this journal entry, Elly has, fairly quickly, rebounded tremendously from both incidents. She continues to make great progress and I marvel at her brain’s capacity to heal itself. There is no question that both events were physically and emotionally stressful to Elly and our family and close friends, but the reality is they are almost insignificant compared to what we had all been facing and what Elly has overcome during the first (almost) six months on this Journey. Thankfully, she is now physically, emotionally and intellectually back with us. If I were to put a number on it I would guess 70 plus percent, maybe even eighty at this time. Full recovery is still down the road on this journey but the slope on this road, unlike our street, seems to have eased a bit and makes the goal seem much more reachable. We could not have reached this point without all the help from friends, family and so many health professionals, and of course the spiritual support from all of your good thoughts, well wishes and prayers through this ordeal. This journey, though not over, has made us stronger and closer than ever. We are so fortunate to have been granted a new lease on life together and, with G-D’s help, we hope to continue on this path and make the best of it.
In closing this journal entry I must report that we are planning our first real vacation since this episode in our lives began. We shall be visiting our favorite place in early October with Ron and Brina. Sedona, AZ been “calling” us for months now and we can’t wait to return to that beautiful and special place and visit with friends we have made during our many visits there. We will also spend some time in Flagstaff. This will be a modification of our original plans, which had to be cancelled last April. We were to explore southern Utah (Bryce and Zion Canyons) before heading to Grand Canyon and then to Sedona. This modification will make for a more relaxing trip and allow Elly her much needed rest periods. Hopefully next year we can do the canyons trip. Elly and I are also trying to plan a second trip so that we can use our timeshare and also our credit with Southwest Airlines from the cancellation of our March 2015 travel to San Diego for the Society of Toxicology meeting. To do that without incurring penalties we must fly before the end of January. Nothing has been decided yet but you can bet we will try to pick someplace warm. We are also planning to go back to New Orleans to the SOT meeting in March 2016.
So as you can tell, life is getting better all the time. We deal with challenges and keep the forward momentum as best we can. As our most solemn High Holy Days (Rosh Hashanah and Yom Kippur) rapidly approach we must take time to “reconcile the books” of our individual lives. It is a time for introspection, seeking forgiveness for things we may have done knowingly or unknowingly, and committing to do better in the coming year. It is also a time to give thanks to G-D for our blessings. For our immediate family and very close friends, this year we certainly have so much for which to be thankful. This of course includes everyone who follows Elly’s Journey, all of our friends and family from near and far, who continue to send their good thoughts and prayers. We wish for everyone to be inscribed in the Book of Life for a good year.
Thank you so very much.
We wish you Shalom – Peace
Love, Elly and Steve