A more resilient brain for Suzanne
Donation protected
(Nederlands: scroll naar beneden!)
My name is Suzanne (39) and because of brain injury I cannot be the person I want to be. No treatments that can help me are available in the Netherlands, but in Utah (US) there are. I am hoping to raise the necessary € 16.000 in order to pay for this treatment. Would you like to contribute to the cost of this treatment to give me a more resilient brain?
I live with brain injury. I hear, feel, smell and see everything and my brain does not filter what is relevant or not. The neighbor’s lawnmower, the garbage truck in the street, a scraping knife on my daughter's plate, my son's singing, the smell of the lasagna we are having for dinner, the sun reflecting on a passing car, the wind rustling quietly through the trees. Everything enters. My stimuli filter is broken, which casues sensory overload which makes me very tired every day, so I rest for two hours every afternoon to de-stimulate in a dark room, with my noise-cancelling headphones and with a sleeping mask on. No, sitting in the sun is not resting. Because even with my eyes closed, the sun stimulates me with light and warmth.
Besides that I often don’t remember what I have said. It is difficult for me to come up with words that I do not use regularly.
I was a young, ambitious and sporty woman. I combined raising our three children with a career as a buyer in a medical company. Furthermore, I liked sports and participated regularly in triathlons. Happily married to my college sweetheart.
My life took a completely different turn when I suffered a acquired brain injury (ABI) in October 2018 due to a fall from my racing bike. A period of rest, hoping for recovery, rehabilitation and reintegration followed. After 2 years of illness, with no prospect of significant recovery, I was declared fully incapacitated for work.
My life is now organized in such a way that I can handle it well. Unfortunately, I have to take into account the considerable limitations I experience. I had to stop running, too many stimuli. An excursion with the family? I have to plan it well, because recovering from it takes several days. Helping out at school? Only when few people are around.
In the Netherlands, treatment of brain injuries is aimed at "learning to live with...". But in the United States there is treatment available: at Cognitive FX in Provo, Utah. This clinic has developed a groundbreaking, innovative and unique treatment method, the EPIC Treatment, which is not applied in this way anywhere else in the world. They have had staggering success. At the moment, more than 1000 people have already been successfully treated. Results have been achieved in 95% of cases and the average improvement in the patients' symptoms is no less than 75%. Amongst them are also patients from the Netherlands, who shared their positive experiences with Eva Jinek on Dutch television.
The Dutch Brain Foundation has started to investigate the treatment, for which I hope to be a test subject. But it will take years for a similar treatment to become available in the Netherlands. For it to be covered by an insurance company, we are talking at least a decade from now, and this is an optimistic prognosis. However, I am living with brain injury right now. I have a family that needs me. I don't want to wait for a possible treatment in Holland. I want to be treated at Cognitive FX.
The treatment, travel and accomodation is intensive and expensive; about €16,000. That is why we are starting this crowdfunding! We don't have this money. And for this I turn to you, dear reader. Would you like to contribute to the costs of this treatment in order to give me a more resilient brain? My family and I would be forever grateful.
NEDERLANDS:
Ik ben Suzanne (39) en ik kan door hersenletsel niet de persoon zijn die ik wil zijn. In Nederland is geen behandeling voor mij, in Utah (VS) wel. Met een crowdfundingsactie hoop ik € 16.000 op te halen zodat ik die behandeling kan betalen. Wil jij bijdragen in de kosten voor deze behandeling om mij een beter belastbaar brein te geven?
My name is Suzanne (39) and because of brain injury I cannot be the person I want to be. No treatments that can help me are available in the Netherlands, but in Utah (US) there are. I am hoping to raise the necessary € 16.000 in order to pay for this treatment. Would you like to contribute to the cost of this treatment to give me a more resilient brain?
I live with brain injury. I hear, feel, smell and see everything and my brain does not filter what is relevant or not. The neighbor’s lawnmower, the garbage truck in the street, a scraping knife on my daughter's plate, my son's singing, the smell of the lasagna we are having for dinner, the sun reflecting on a passing car, the wind rustling quietly through the trees. Everything enters. My stimuli filter is broken, which casues sensory overload which makes me very tired every day, so I rest for two hours every afternoon to de-stimulate in a dark room, with my noise-cancelling headphones and with a sleeping mask on. No, sitting in the sun is not resting. Because even with my eyes closed, the sun stimulates me with light and warmth.
Besides that I often don’t remember what I have said. It is difficult for me to come up with words that I do not use regularly.
I was a young, ambitious and sporty woman. I combined raising our three children with a career as a buyer in a medical company. Furthermore, I liked sports and participated regularly in triathlons. Happily married to my college sweetheart.
My life took a completely different turn when I suffered a acquired brain injury (ABI) in October 2018 due to a fall from my racing bike. A period of rest, hoping for recovery, rehabilitation and reintegration followed. After 2 years of illness, with no prospect of significant recovery, I was declared fully incapacitated for work.
My life is now organized in such a way that I can handle it well. Unfortunately, I have to take into account the considerable limitations I experience. I had to stop running, too many stimuli. An excursion with the family? I have to plan it well, because recovering from it takes several days. Helping out at school? Only when few people are around.
In the Netherlands, treatment of brain injuries is aimed at "learning to live with...". But in the United States there is treatment available: at Cognitive FX in Provo, Utah. This clinic has developed a groundbreaking, innovative and unique treatment method, the EPIC Treatment, which is not applied in this way anywhere else in the world. They have had staggering success. At the moment, more than 1000 people have already been successfully treated. Results have been achieved in 95% of cases and the average improvement in the patients' symptoms is no less than 75%. Amongst them are also patients from the Netherlands, who shared their positive experiences with Eva Jinek on Dutch television.
The Dutch Brain Foundation has started to investigate the treatment, for which I hope to be a test subject. But it will take years for a similar treatment to become available in the Netherlands. For it to be covered by an insurance company, we are talking at least a decade from now, and this is an optimistic prognosis. However, I am living with brain injury right now. I have a family that needs me. I don't want to wait for a possible treatment in Holland. I want to be treated at Cognitive FX.
The treatment, travel and accomodation is intensive and expensive; about €16,000. That is why we are starting this crowdfunding! We don't have this money. And for this I turn to you, dear reader. Would you like to contribute to the costs of this treatment in order to give me a more resilient brain? My family and I would be forever grateful.
NEDERLANDS:
Ik ben Suzanne (39) en ik kan door hersenletsel niet de persoon zijn die ik wil zijn. In Nederland is geen behandeling voor mij, in Utah (VS) wel. Met een crowdfundingsactie hoop ik € 16.000 op te halen zodat ik die behandeling kan betalen. Wil jij bijdragen in de kosten voor deze behandeling om mij een beter belastbaar brein te geven?
Ik leef met hersenletsel. Ik hoor, voel, ruik en zie alles en kan niet filteren wat relevant is of niet. De grasmaaier van de buurvrouw, de vuilniswagen op straat, een schrapend mes op het bord van mijn dochter, het zingen van mijn zoon, de geur van de lasagne van het avondeten, de zon die reflecteert in een voorbijrijdende auto, de wind die rustig ruist door de bomen. Alles komt binnen. Mijn prikkelfilter is stuk, hierdoor word ik elke dag weer heel moe en ga daarom elke dag 2 uur rusten om te ont-prikkelen. In een donkere kamer, met mijn noisecancelling headphone en slaapmasker op. Nee, in het zonnetje zitten is geen rusten. Want de zon, die prikkelt mij met licht en warmte.
Daarnaast weet ik soms niet meer wat ik heb gezegd. Ik kom moeilijk op woorden die ik niet vaak gebruik.
Ik was een jonge, ambitieuze en sportieve vrouw. Ik combineerde de opvoeding van mijn 3 kinderen met een carrière als inkoper bij een medisch bedrijf. Verder sportte ik graag en regelmatig en deed triathlons. Gelukkig getrouwd met mijn lieve lief.
Mijn leven nam een geheel andere wending toen ik in oktober 2018 door een val van mijn racefiets niet aangeboren hersenletsel (NAH) opliep. Een periode van rusten, wachten op herstel, revalideren en re-integreren volgde. Na 2 jaar ziekte werd ik, omdat er geen zicht is op aanzienlijk herstel, volledig arbeidsongeschikt verklaard.
Mijn leven is nu zo ingericht dat ik het goed aankan. Jammer genoeg moet ik daarbij rekening houden met de flinke beperkingen die ik ervaar. Met hardlopen moest ik stoppen, teveel prikkels. Een uitje met de familie? Dat moet ik goed plannen, want de dagen erna ben ik daar nog moe van. Helpen op school? Alleen als het met weinig mensen is.
In Nederland is behandeling van hersenletsel gericht op het “leren leven met...”. Maar in de Verenigde Staten is er wel behandeling mogelijk: bij Cognitive FX in Provo, Utah. Deze kliniek heeft een baanbrekende, vernieuwende en unieke behandelmethode, de EPIC Treatment, ontwikkeld die nergens anders ter wereld op deze manier wordt toegepast. Ze boeken duizelingwekkende successen. Op dit moment zijn er al meer dan 1000 mensen met succes behandeld. Bij 95% werd resultaat behaald en de gemiddelde verbetering van de klachten bij de patiënten is maar liefst 75%. Ook revalidanten uit Nederland, die hun positieve ervaringen bij Eva Jinek op tv deelden.
De Hersenstichting is begonnen de behandeling te onderzoeken, waar ik hopelijk proefpersoon voor kan zijn. Mocht het al ooit tot een soortgelijke behandeling in Nederland komen, dan zijn we jaren verder. En voordat het vergoed zou kunnen worden door een verzekeraar, zijn we 10 jaar verder en dit is een positieve prognose. En ik leef nú met hersenletsel. Ik heb een gezin dat mij nodig heeft. Ik wil niet wachten op een mogelijke behandeling in Nederland. Ik wil naar Cognitive FX.
De behandeling, reis en verblijf is intensief en kostbaar; ongeveer € 16.000,-. Daarom starten we deze crowdfunding! We hebben dit geld namelijk niet. En hiervoor kom ik bij jou, lieve lezer. Wil jij bijdragen in de kosten voor deze behandeling om mij een beter belastbaar brein te geven? Mijn dank en die van mijn gezin is groot.
Fundraising team: Inzamelingsactieteam (3)
Suzanne Mol
Organizer
Roden
Erik Baas
Team member
Albert Mol
Team member
