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Anti-NMDAR Encephalitis Lived Experience – Michele’s Story – Part Two

A picture of the family including Ross and Michele. Michele describes Ross' lived experience of Anti-NMDA Receptor Encephalitis.

This is Part 2 of Michele sharing her son Ross’ lived experience of Anti-NMDAR Encephalitis. This includes the worsening of his symptoms, how it affected the family, their struggles with the healthcare system and getting a diagnosis.

Worsening of symptoms

Over the next day or two we did little walks and went for lunch, in hindsight I now recall Ross again coughing and also sweating when eating.

Ross was not sleeping at all and was becoming very distressed. We arranged a back and shoulder massage for him and he tried breathing exercises as well. Nothing could reassure him.

Very early one morning, to this day I recall this with clarity, I came downstairs and Ross was in the lounge and he was panicking and shoved paper at me, he said “what if I forget”. He had written: –

MY NAME IS ROSS BUGGINS

I AM 29

I HAVE A SISTER AND BROTHER

I LIVE IN NORWICH …. I WORK WITH JOHN ….

MY PIN NUMBERS ARE, WHAT ARE THEY … I CAN’T REMEMBER ANY OF THAT STUFF ANYMORE.

WHAT IF I FORGET MY FAMILY…? AND WHO I AM?

I tried to talk to him still thinking that this was a mental health issue. I was trying to hide my own panicky feelings and thoughts. I wondered if he had dementia. Or Alzheimer’s.

Ross said he was worried he might forget everything in his life as he was so very tired from lack of sleep and felt that if he wrote it down it would remind him of us all.

That afternoon Ross refused to leave his room so I sat with him for hours worried about leaving him on his own. I encouraged him to look at photos, books, do breathing exercise, when he announced that he didn’t care about anything or anyone. He said “There is no point to it all Mum, as we all die anyway”. He announced that he didn’t give a sh** what anyone thought and he might as well run naked down the road, he did not give sh**.

He said he got scared in case he ever lost his temper. He said he once lost his rag when someone nearly crashed into his car in the fog one morning. He said what if I had got out of the car and what if I’d punched him…what if…what if… what if… So I asked him had he punched anyone? Had he had a road rage incident? Had he ever done anything illegal? Had he broken the law? “No, no “, he said but what if …what if …” He said he felt numb and isolated and lost.

During this time, I noticed Ross was blinking a lot and rubbing his face and nose and scratching. I asked him why he kept doing it and he said he wasn’t and looked at me as if I was being silly. He seemed to be just be vacant at times showing no emotion. His face was strangely strained looking.

Ross then visited our own GP with his sister but the GP just suggested a different medication. This unsettled Ross more as he said every doctor he saw suggested different medication. (He has always avoided medication of any sort.)

That evening he asked to speak to my twin sister, his godmother, who was a nurse years ago. He was laying on our settee and told her that he felt odd and thought something was wrong, he said, “Aunty I feel like I am falling and my heart is going fast. None believes me”. He then rushed to the toilet and said he felt ill but was insistent he leave the door open in case he collapsed and died on his own. Later he said, “I must be really ill to sit on the loo with you mum watching mum”.

His moods did not improve. On the 10th July 2014, he became so very distressed at home with me. My husband was out and Ross was constantly pacing and scratching his face and ears and touching his nose. He kept climbing over the coffee table and under it so I rang his GP in Norwich for advice but during that call Ross was in sheer panic and laying on the floor screaming “My head is burning, I can’t breathe “.

I tried to calm him but his body seemed locked, his hands clenched and rigid. He said “I’m dying mum, I love you, help me “. I was so scared so I rang 111, which was a nightmare and waste of time. I got so upset with their lack of urgency that I hung up and I just dialled 999. The paramedics arrived promptly and were brilliant. In our local A&E I relayed all our concerns to the staff and after an overnight stay we were told there that there was nothing was physically wrong with Ross as the CT scan and basic tests were all clear. I asked about support for Ross but they told us we could go home and that Ross should go see his own GP. We explained all about the anxiety, paranoia, blinking, insomnia, fear, his burning head sensation, lack of concentration, memory issues, but, sadly, we had no answer to their “nothing physical” wrong diagnosis.

At home, on the 12th July, Ross was scared and agitated and he was acting very oddly and he said he wanted to go to hospital. Our younger adult son got the car ready to take me and Ross to the local hospital but Ross then refused to move, it was a traumatic stand off for a few hours on our stairs. It was heart breaking to see the distress in my younger sons face as he was in tears at seeing his big brother in such a state and I was at my wits end and feeling very scared and confused myself. We decided that maybe a change of scene at my daughter’s home would be good for Ross as she lives only a minutes’ walk away from us. I agreed to sleep on the sofa at her home in case she needed help with Ross.

Misdiagnosis

It was a bleak night; Ross didn’t sleep but his sister was just amazing with him. Ross suggested they both take all his tablets together. Later the next day Ross was crawling on the floor hitting his head on the wall and having trouble breathing, we again called 999. At the A&E we were basically told it was mental health issue and they would refer him to the mental health crisis team. We were basically left waiting and yes it was a weekend day and we waited and waited…… By the evening no one had seen him. Ross had calmed down due to the medication he had been given and he finally went to a deep sleep at about 11.30pm. So my husband and I went home for sleep while my daughter stayed with Ross but as soon as we got in the door at home we got a frantic phone call from my daughter to say Ross had been rudely awakened by the Crisis Team to interview him. We rushed to the hospital to meet my daughter and Ross. I am sad to say that the visit by the two members of the crisis team just made the situation worse. Ross was unable to communicate having just been woken and my daughter was very much on the defence of her brother. How on earth could this meeting have gone any worse, they seemed unable to deliver any help, they seemed unsympathetic and announced there were no mental health beds in the area and we should take Ross home but they would arrange a visit by the crisis team the next day. I showed them Ross’s notes that he had written himself regarding his memory worries but they did not react to them. We then had to plead for them to arrange for Ross to stay in the hospital for a night as I truly believed as a family we would all need medical help if we didn’t get a few hours’ respite.

So we went home that morning and Ross said to me, “so mum it seems I have a mental health issue, I can’t believe it and I’m sure there is something wrong with my head, but the doctors don’t believe me”.

He spent a while on his lap top researching mental health, he said it was hard to accept it but he would have to. I explained that mental health is an illness and all linked to our physical well being and there was no need to feel embarrassed as we would all support him. The local crisis team visited Ross whilst he stayed in Canterbury, he was very lethargic and tearful. We watched him sob on our friend’s shoulders. He seemed like a lost child.

I was very, very concerned by Ross’s state as he seemed very zombie like, and at night his breathing and snoring was horrendous. I assumed it was all to do with the medication. Ross’s girlfriend arrived in Kent to take Ross back to Norwich and the crisis team in Norfolk were allocated to support Ross along with the G.P.

Trying to get back to normal

Ross desperately tried to resume normal life. He went to a folk festival with a friend which he found very stressful, getting ready and packing up his tent and rucksack was a major task for him, something he has always done since he was a young boy. Again we were thinking it was his anxiety and panic attacks causing this.

Ross started swimming and joined relaxation class to try to alleviate his symptoms. We spoke daily with Ross but it was hard to get much from him on the phone, he was just not functioning normally. Ross felt he was not getting any real benefit from the crisis team visits.

Further incidents

In August Ross’s girlfriend rang me asking me to talk to Ross. He was convinced his girlfriend was being unfaithful and he was totally paranoid about it. I tried to calm him down and felt very cross with him for being so unkind to her, it was a long, long phone call.

Another incident was when Ross rang us to say he had broken the kitchen tap. He was pleading with me and his dad to drive right then to Norwich to help him fix it. His girlfriend had to come home from work to organise a plumber as Ross was incapable of even doing this.

Another incident occurred when his toilet cistern was leaking and this caused him to have a severe panic attack. He got everything out of proportion and said water was everywhere and he would have to rip up all the wooden flooring in his en-suite. He was totally convinced the whole house would flood and he could not be calmed by us on the phone. Again his girlfriend was just so amazing dealing with him.

By 26th August Ross was in a dark place. He was still not sleeping and had again seen the G.P. He could not stop his brain from all the paranoid thoughts and worries that were constantly in his mind.

At home alone, he thought the one thing to stop all this is to die so he tried to hang himself with a belt from his cupboard door. The belt broke. Ross survived. Luckily his business partner had come to see him that same day and Ross admitted what he had done. He rang us on the phone to talk to us, I was horrified and could not think straight and for some reason I did not tell my husband until the next day. Why I made that decision I don’t know, maybe I was trying to avoid him being heartbroken. His girlfriend alerted the crisis team. Ross assured them and everyone he had not meant to do it and it was a wakeup call.

He was scared of being sectioned. As his mum I felt totally shell shocked by the fact that my son was so depressed that he wanted out of his life. I just couldn’t comprehend that we may have lost him that day. I was also very scared that he would he be Sectioned and was desperate to avoid that happening. My husband & I travelled Norwich to be with him and his girlfriend.

Holiday abroad

Ross and his girlfriend were due to go away on a planned holiday abroad for a friend’s wedding, which Ross wanted to prove he could do. We had our reservations about this but he was so insistent that he went and proved to himself he could get on a plane, he wanted to get away from Norwich with his girlfriend.

I recall him in the hallway of his house constantly saying;” what if I get lost on holiday, I don’t know where I will be”. It was constant repetition. He also constantly checked his suitcase and could not stop worrying about what had been packed. He had a very strange anguished type of grimace look on his face.

We heard them leave early next morning for the airport, I was full of trepidation. It was not long after that his girlfriend rang us to say Ross had tried to climb out of the moving car as he was petrified they would crash and that he was freaking out about flying. They were returning back home driving very, very slowly when the traffic police stopped them. The police eventually escorted them both home.

Ross went to bed and the next day refused to eat or drink and come out of his room, he said there was no hope if he couldn’t even manage to go on holiday. He said his life was over. He was inconsolable. We had all reached desperation. We called the mental health crisis team and asked them to visit. Ross’s dad had to stop him from leaving his house.

Sectioning

The crisis team and doctor arrived late that evening and decided they needed to Section Ross for his own safety. It was heart-breaking and he couldn’t understand why we let it happen. We had to agree to it otherwise we were told that none of us could be named as the nearest relative on the forms and that instead someone from social services would be allocated as Ross’s advocate.

We felt he was slipping out of our control. The nightmare ensued; there were no beds in Norwich so we were told Ross had to go to an open unit in Nottingham that night. We didn’t get transport for Ross until the midnight. They let Ross’s girlfriend travel with him in the private ambulance. It was dark and I felt my world was ending and I was panicking I would loose sight of Ross. We followed the private ambulance.

We went straight to the Unit in Nottingham to see Ross. Ross seemed a bit calmer but could not fathom out why he was there, he couldn’t recall the climbing out of the car incident.

We got a hotel room and had barely had any rest when Ross rang us from his mobile saying; “What is going on mum- they won’t let me go”. We could hear the staff talking to Ross in the background but Ross was insistent that he was leaving the premises. I pleaded with him to go back there fearful he would get lost. The police were called to escort Ross back to the open unit.

The next two days we spent with Ross at the unit visiting him in the relative’s room but he was unsettled. He would not accept that he was on a 5-minute suicide watch and got very cross with the intrusion of his privacy. He insisted on getting his phone charger at night out of the office which was against the rules due to safety issues. Ross was proving difficult so the Doctors told us he had to go elsewhere to a secure unit as they were not able to manage him. We pleaded for Ross to stay there but we were told he would be picked up by ambulance with two minders to go to secure unit at a hospital in Manchester. They would not allow any of us to travel with him in the ambulance.

We followed Ross across the country, it was so surreal. I had always wanted to visit that part of the U.K. but I don’t think I could ever travel across the Peaks again!

We arrived very late at this huge hospital which resembled a Victorian prison with is maze of corridors. We were eventually allowed to say goodnight to Ross in this huge high ceilinged room, behind many locked doors. He was so upset that we were leaving him there, he just could not recall what had been going on. The woman in the room told us there is always a reason for behaviour like Ross’s and that he would be looked after. If only they had thought out of the box, that there may be a physical reason for all this then Ross may have been saved the continuing nightmare of the next few months…..

We frantically spent the next week trying to get Ross moved back to a bed in Norwich. We had to constantly badger the Norwich bed bureau. We needed to be based at Ross’s home with his girlfriend so that she could carry on working and we could offer support. There was also a limit to the number of days we could stay in hotels.

We were told they would do blood tests but they never did. We were in constant touch with the hospital. It was distressing being so far away from Ross especially as they forced sedation on him as he would not comply and he was getting so distressed and kicking the door to be let out. I felt so angry with them but tried to understand that they wanted to calm him.

This story is continued in Part 3 Anti-NMDA Receptor Encephalitis Lived Experience – Michele’s Story – Part Three – Encephalitis International

For more information on Anti-NMDAR Encephalitis, click here.

For more stories on Anti-NMDAR Encephalitis, or other types of Encephalitis, please click here.

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Page Created: 11 December 2023
Last Modified: 30 September 2024
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