Testimonials

24th of February 2018 my dad got a massive hemorrhage in the left side brain. He was brought to the hospital where he was operated by a neurosurgeon. Because of another escape of blood 4 days later, a ruptured aneurysm was discovered. Complication of vasospasms in 6 days post-accident. He didn’t wake up when sedation was stopped a few days later, all doctors of intensive care told us the chance he would make it, was practically zero. But we didn’t give up and kept on believing strongly. My mother and I were there 3 times/day, talking to him, holding him and giving him as many stimuli as possible (massage, smells, funny memories, his favorite music). On April 11th (after 6 1⁄2 weeks) he started reacting to us (correct emotion/reaction in relation to story). A week later, doctors confirmed that he was no longer in a coma. They never expected this. After countless complications (several pneumonia and bacterial infections) and the best possible efforts of the intensive care team, he was brought to the neurology unit (June 2018). As he slept majority of the day, he was often wrongly diagnosed (minimal consciousness -) and therefore underestimated. However, there was a clinical psychologist who had a different view (minimal consciousness + or even exit-MCS at times). 

I read about Amantadine and asked the doctor if that was something we could try, to try and stimulate his consciousness. He told me they already tried (but didn't tell us, to avoid bias) for a short period in high dosage, but didn't see any effect. I asked the specific dates and compared them to the diary we kept. Those were marked by us as his most alert & responsive days at that time. A few weeks later, mainly because of a lack of rehabilitation hours & doctor's statement and recommendation to move him to a nursing home, we transferred my dad at a neurology unit. This was a huge step forward for him, he started receiving Rilatine which surely made my dad more alert & responsive. We discussed our goal to try to provide him with the best possible rehabilitation, We started to rebuild our home and finished end of March, so my dad could come home during the weekends. As I also saw him during the mornings/early afternoons now, it struck me that his consciousness could still vary and it worried me. With Rilatine, he could be alert & responsive, but it felt/looked artificial (also was unable to take naps). What I saw often, is that he could get 'shocks' (exactly looks as if you get an electrical shock). After such a shock, he was always more natural, more 'himself'. For me, it felt as if he could have moments that tend to a normal consciousness, but also have moments where he 'falls back' to a lower level of consciousness.

I discussed this with his neurologist and together with team neurology, we decided to try Amantadine again. My request was to consult Prof. Laureys, which they did via email. We started with 25 mg and could see the immediate effect. He was more relaxed, more 'natural', more himself. More tired as well (because of stopping Rilatine) of course. After a few weeks, he started to move his right leg (hemiplegic side), which he had never done before. 2 weeks later, he started using his voice. Amantadine had a mildly positive effect, on both vocalisation and movement. The dose of Amantadine was increased every 5 days, and at dose 270 mg, my dad got a massive relapse due to hallucinations and physical complications (i.a. filamentary keratitis at 'good' left eye and severe hyponatremia). Immediately, Prof. Bouche stopped all medication (stop Amantadine, no Rilatine to replace it). His responsiveness was lower again. Mid August 2019, after a session of neurostimulation (tDCS) (was given for approximately 4 weeks), we were told he got a small epileptic seizure (focal) during the night (first seizure, 1,5 years post-accident). The next day, Keppra was started, 3 times/day. It made him sleep majority of the day and his consciousness dropped back to a lower level. As a result, rehabilitation was very hard for some weeks and we had to leave K7. Luckily, his doctor wanted to readjust my dad's medication and started Rilatine again. The result was positive, it gave my dad the energy level and boost he needed. Rehabilitation started again and he made a slow but good progression. Some weeks later, we decided to reduce and eventually stop Keppra because we saw a major negative effect (not only more sleepy & drowsy, but also dysphagia that got worse and less vocalization).

Beginning of January 2020, he came home fulltime. We decided to try Equasym XL, since Rilatine gave my dad for sure the energy he needs but also a lot of highs & lows. With its immediate release of 30% and a modified release of 70%, the Equasym 'plateau' gave my dad a more consistent level of awareness & responsiveness. Since a few months, his dose consists out of 50 mg Equasym in the morning, 30 mg in the afternoon. Mid February 2020, in search of an ambulant rehabilitation program, we had a consult with another doctor where he examined my dad and mentioned the idea
to place a Baclofen pump. Yes, by times his right leg could be spastic, but I always had the feeling this also had something to do with his apraxia (his leg can be relaxed as well). The doctor told us to first try to increase the dose of Lioresal (at that time he was given 3x 25 mg/aday). As adviced by the doctor, we tried to increase the dose of Lioresal but stopped after a few days since he felt a lot more sleepy and less responsive. Since the small increase had such a major negative impact, we decided to drastically lower the dose of Lioresal. The muscle relaxant seemed inversely related to my dad's consciousness. Every time we lowered the dose of Lioresal, he became more alert and conscious. Eventually, we completely stopped administering Lioresal , with no increase of spasticity and more importantly, a more consistent level of awareness & responsiveness. It seemed the high dose of Lioresal (60 to 75 mg) he was given all this time, was copied with every transfer, not sure if this happened because of negligence and/or stigmatization. Since we quit Lioresal, my dad is able to move his right arm & hand (hemiplegic side) which helps him to strengthen and build up muscles again (active cooperation hemiplegic side). He cannot stand up or walk and is 100% care-dependent. He suffers from dysphagia and severe apraxia (including apraxia of speech, probably in combination with aphasia). After being able to say quite some words/sentences in the first months post-accident, to only a handful the second year, he is now blocked in mutism since December 2019 (even not spontaneously, like he did in the acute phase). Since we quit Lioresal, there is intentional 'searching mouth' behaviour ('grooping') and he often vocalizes while sleeping.

As you can read, for almost 3 years now, my dad's consciousness has almost been an existential struggle for me, a journey of challenging the status quo, without any medical training to point the way. There was no map, only guided by courage, determination and a tight family bond, in a climate that is often characterized by (false) despair. I would like to end this letter to say that my dad is an unbelievably courageous person, every day he gives his all, and together with my mom and me, we are very motivated and perseverant. We are aware of some serious permanent damage, and we are very realistic about it, but we also want to reach the maximum of his capabilities, so we can still give him a valuable and happy life.

-Mrs L. Knokke-Heist