The 24^th year of Jason’s life was one of turmoil.

It came on full blown one morning. Nothing like this had ever happened before. Jason started having extremely terrifying illusions, such as when he looked at his beloved dog and at me we appeared to have our throats slashed. Jason was absolutely terrified. It was awful. I didn’t know what was happening. Poor Jason. I rushed Jason down to the hospital and Jason was admitted for two weeks in total. Tests and MRIs were done as tumour growth was suspected as the culprit. MRIs , scans showed no significant changes in the existing brain tumours. It was a very distressing time and all I could do was to be there from morning until night(apart from going home to do horses) to be at his side to comfort and reassure. Jason would see a building and it would appear to be blown up, buildings appearing on fire, danger everywhere, repetitive disturbing words going over and over kept tormenting Jason’s mind. Jason was fully aware that these images were not real but was very frightened by the persistence and by the lack of control. It was so horrible. Drs couldn’t find the exact cause.  A psychiatric team was brought in to do an evaluation and quickly concluded that Jason was not psychotic or depressed but that his symptoms were organic, an organic change in brain chemistry due to the brain tumours, seizures along with disturbances to the brain caused by radiation and surgery. Jason was given Olanzapine which helped to calm him. The neurologists suggested taking Jason off his current anti-seizure drug Topamax since this drug can sometimes have psychotic side effects. Jason had been on this drug for quite some time with no previous problems. They replaced this with Keppra. This played havoc on Jason’s body and seizures. Keppra did not agree with Jason and the disturbances were still happening unless he was sedated with Olanzapine. Jason was getting very discouraged so Celexa was added to the mix. Despite everything the sense of humour was still there. The medical team were great with Jason and enjoyed our banter. I know they were humbled by Jason.

We went home. Gradually the disturbing images and voices went away. Jason off and on would have ‘head rushes’ along with sweaty palms and racing heart rate. Right away I would think brain stem, the regulator of heart rate and breathing. My constant worry was the ever present threat of the left acoustic neuroma(hearing) tumour growing just enough to put the slightest increase of added pressure to his brain stem causing it to shift and Jason would be in serious trouble. Daily life was very difficult from early morning to late at night trying to care for Jason, 2 teenage daughters and operate an active horse boarding stable.

Jason’s seizure activity gradually worsened over the next few months.Recent EEG video testing showed very high activity. Neurologists stopped the drug Keppra and started Jason on Trileptal.   His balance became very poor, sometimes falling right over and causing injury. My Jason radar was on high alert constantly. After alerting Jason’s neurosurgeon of the drastic change an MRI was ordered. There glowing on the screen was the culprit ,a new tumour, a left temporal meningioma brain tumour. The spinal tumour on the C1/2 also had grown considerably. NF2 had reared it’s ugly head again. Seizures were getting worse. Neurologists stopped the Trileptal and started Carbamazepine and Clobazam. This was the best combination of drugs to agree with Jason. Jason’s neurologist said there was nothing more that they could do here in Ottawa but recommended Jason to be seen in Montreal. We were referred to the Montreal Neurological Hospital(MNI), to the Epilepsy monitoring unit. They would monitor Jason 24hours a day for 3-4 weeks and decide if surgery was possible and safe to give Jason a better quality of life. I needed to get Jason there now. To get in proved to be very difficult, almost impossible. A limited number of beds and the waiting list was long. At the end of my long isolating laneway  I sat day after day at my kitchen table phoning anyone at the MNI that would listen to me. I was fighting for my son. I jumped through hoops, hit road blocks I just couldn’t seem to get the right person who would really listen to me, to want to listen, to help…to try to understand what was happening in this little farm house day after day….UNTIL….the day I wouldn’t back down on this robot type person on the other end and to get rid of me she transferred me to this friendly helpful sounding voice. I knew I had reached the right person, the right office, the office of power and decisions. I explained Jason’s story, my worry and how it was for me and she listened.

“Jason is currently having 3 or more seizures a day. He does not have any kind of aura so there is no warning. Whilst in the seizure Jason is unaware of his surroundings and self. The seizures are very physical, arms/legs flailing and thrashing. He is not conscious of where he is walking, arms swinging out with such strength. Whatever Jason happens to have in his hands when the seizure strikes is held in a vice grip. This is very dangerous at times. I try to hold him from behind , arms around his midbody to guide him out of the way of obstacles and to hold him up if he starts to lose his balance. There are numerous times that I have gone down with him trying to soften his fall. He is a solid 185lbs and it takes everything I have got to guide him out of danger. It is insanely stressful waiting for these explosive seizures to happen at any time of the day. While in a seizure Jason has hurt himself several times in the shower by falling, he currently has bruised ribs from a bad fall last week, had swellings on the back of his head from falling back and hitting his head on the table, he has burnt his hands, while in a seizure he plunged his hands into a casserole that had just come out of the oven and the list of accidents goes on. The brain does not register anything so Jason is not in control or aware of anything. We have stairs in our house and I am very worried about him falling down them when in a seizure. We are constantly on the alert listening out for Jason and knowing where he is at all times. Jason has two younger sisters and they are constantly listening for him and ready to help. We all are. Driving, shopping, being out in crowded areas etc is hazardous. Everywhere is a potential danger for Jason and the worry and anxiety is overwhelming for the family to try to keep him safe. My hearing and intuition has become very refined and sharp.  I have become acutely tuned into Jason’s way of being…his breathing, his swallowing, the sound of his foot meeting the floor, his gait and his ways. I constantly have a radar on Jason so that I can pick up when any one of these functions alters even just the slightest. This is my warning that a seizure is to start right now. This was how it is to try to keep him safe. No matter what I am doing wether talking to the girls,or friends, putting dishes away, laundry..normal house activites I appear (well I think I do!) that I am engaged which I am  but I ALWAYS have an ear on Jason. There are two tracks running constantly. It is like I am running at a high frequency. After the physical part of the seizure subsides then Jason is very confused for about 20 mins. “Is it morning time or night time?” checking his watch. The brain doesn’t register light or dark. I tell him “It is daytime love, 2 o’clock in the afternoon….just after lunch”. Jason checks his watch again. “Oh, ok” “Where’s Mum, where’s Mum?” with a panic in his voice. I say “You have just had a small seizure love that’s all so if you can just wait a few minutes it will all come back to you”. Then he realises it is me, I am Mum and we both have a chuckle. Yes, sense of humour we have. Jason is always very concerned about what happens in the seizure as sometimes he would see the aftermath once he has come too and he feels really bad about it. Jason is the gentlest caring soul I know and he would be shattered knowing all that happens at times. It is a frightening feeling for Jason having no control and no recollection. I decided early on that if Jason is going to be plagued with this I will make it as least traumatic as possible so when Jason is safely sitting after the seizure and is in a dazed confused state I  run around cleaning up any broken items, spilled liquids, righting up furniture etc. I  have about 15-20 mins. before Jason is completely aware of his surroundings. Then everything goes back to ‘normal”.

She never interrupted me except for an occasional compassionate sound coming from the back of her throat. When I finished she was so sensitive and compassionate. She got what I was saying, really understood everything and agreed that Jason needed to be seen soon. She would see what she could do and promised to get back to me. I couldn’t believe it she was like a guardian angel. I told her so and I will never forget what she did for me through the years. After I hung up I just wept …such relief and all the frustration and fight was now dissolved. Somebody out there now knew what was happening here and was going to help us.