ME: Working with a Neuropsychologist

I’ve recently been given a new member to the ever-growing team who care for my mental and physical health needs, one that I didn’t even know existed until a few months ago.

Her name is Nita. Nita is a neuropsychologist.
Probably like me you have no idea what a neuropsychologist does or how they can help you in managing your illness. So I thought I’d write a post which explains how Nita works and how she has helped me in our first four appointments.

Nita works as part of the ME service provided by my local mental health trust, in a discipline known as physical health psychology. She deals not only with patients suffering with ME, but also people with other conditions such as strokes, cancer or acquired brain injuries.

Amongst other things her work involves looking at the troubling thoughts and feelings that often come with physical illnesses, and helping people to develop more helpful and compassionate ways of thinking and behaving that can aid recovery.
Nita also helps patients to find meaning and purpose in their illness, as well as grieving the losses that inevitably come with it, and on creating a new sense of self which integrates the changes that the illness has brought. Another way in which she offers support is to help patients accept and live with pain.

So, what did we do in our sessions?

I must admit that before the first session I was feeling a mixture of excitement, apprehension, and anxiety. I wasn’t sure whether I was up to travelling for three quarters of an hour each way to the appointment, and then sitting and talking quite intensely for a further hour. I was really concerned about the effect this would have on my energy levels, and if it would cause me to crash.

On the other hand I was just grateful to have someone to talk to who had experience in dealing with this illness. To be honest, as helpful as my GP had tried to be, ME is such a rare illness that I felt she knew very little about it. Worse still, my psychiatrist had even suggested that it was all in my head, and that if I just stopped thinking about it I would get better.

Anyway, back to our time together.

In the first session, we spent time reviewing my experiences and symptoms, talking about what I expected from the sessions and more generally from life itself, and then trying to set some goals for the time we were to spend together. Initially we agreed on six sessions, with an option to extend this if needed.

In many ways Nita acted as a counsellor, listening attentively to my experiences and helping me to make sense of them. She was not directive, but instead helped me to navigate my own way through this illness, providing gentle nudges from time to time when her experience was helpful. I would say that I talked for 70% of the time, Nita for 30%.

Nita then spent some time explaining to me the different therapeutic approaches that she would use in trying to help me. She suggested that an approach known as Acceptance and Commitment Therapy, ACT, would really be appropriate for our work together. You can find plenty of information about ACT on the Internet.

Since then we’ve covered a lot of ground.

We meet every two weeks to give sufficient time between appointments to integrate what has been learnt.

We looked at what I value in life, how my illness has affected these things, and what I could do to try to compensate for this. This has helped me to develop a new routine for the week, which has added some structure to my otherwise empty days.

Each week we have identified one or two changes that I can make, put these into practice, then reviewed the following week how things went. This has led me to try some new activities, ranging from going out in a wheelchair for the first time to reliving my childhood through building with Lego.

We explored pain and how best to deal with this, looking at when it is appropriate to consult a doctor, when I need to just accept the pain, and how to know the difference between the two. We also looked at energy management and pacing.

And we talked about my relationships, how the illness had affected these, and how to improve these going forward.

Yet I feel that the most important part of our meeting together has been the opportunity to share my thoughts and feelings for the hour we are together with someone who seems to really listen and understand.

Nita has really helped me to unravel some of the knots that living with ME has created in me, and I really believe that this is helping me live better in spite of this illness.

Needless to say I’ve had to make some adjustments to enable me to do this work.

I need to rest totally in the afternoon and evening following our appointment, and I’m usually pretty wiped out on the following day too.

I use a wheelchair to move from the hospital reception to our meeting room. As the appointment is an half hour drive from my home, I’ve also had to develop a rota of friends who can give me a lift to and from the hospital.

But all this has been more than worth it. Nita is helping me to recreate a new life living with ME, something which six months ago I would never have thought possible or have the motivation to explore.

If you get the chance to work with a neuropsychologist, I’d recommend it wholeheartedly.

 

 

 

 

4 thoughts on “ME: Working with a Neuropsychologist

  1. Thanks Ian. That was so encouraging, I have tried CBT over the phone but found it just did not help me. I had major brain surgery for a rare movement disorder four years ago with the aim to improve my quality of life but instead it’s just gone from bad to worse. The op has been a complete failure and
    has left me also with myoclonus muscle jerks and an over exaggerated startle response, In Dec I was diagnosed with frontal lobe epilepsy and non epileptic seizures, I am allergic to every epilepsy drug tried so they can nothing to control the seizures and my generalised dystonia has still progressed and after the op I was looking forward to maybe increasing my hours after having to decrease them for 12 years but instead had to be medically retired. I am on one epilepsy drug which I can tolerate only up to a certain dose but any higher get severe allergic reaction and have to take an antihistamine with it.
    I live with my 87 year father who has Alzheimer’s and the rest of my family i.e. Three elder brothers live three or four hours drive away. I have not seen any of them for over a year. Two are married but one lives on his own and is going blind after a failed corneal transplant and has other serious health problems. One of my other brothers has a number of other serious health problems. None can drive any longer due to health reasons. My personality has totally changed due to my frontal lobe epilepsy and well over three houndred heavy bangs to my head. I have become very impulsive, talk none stop and it’s almost impossible for friends and family to,get a word in, even when on the phone and people say I must go,now I just keep talking. I have memory and cognition problems and am now struggling with anxiety and depression and at times suicidal thoughts. I constantly get conflicting advice from doctors, do exactly what one has told me to then another doctor tells me of saying you should not do that because they have the totally opposite opinion. All I want is to be given the chance to sit down with a medical professional like you described and talk about what’s happened and my feelings. I am struggling to come to terms with it all. I am completely housebound, I am fortunate that I get collected for church at times and go in a manual wheelchair but never go anywhere else at all and miss the fresh air and outside world. Because I am at extremely high risk of falls some doctors have advised me never to walk outside on my own especially concrete yet others have criticised me for
    using a manual wheelchair and not going out on my own. I have recently bought a small electric wheelchair for indoors and now sleep downstairs. In the eight weeks I have had it my falls have reduced from up to twenty a week to a total of five in eight weeks. My family and friends are relieved as we’re constantly worrying about me as I was a regular in A&E from injuries sustained. Yet it feels like no doctor understands me and I have become very depressed from the constant conflicting advice and criticism. The last straw was when I found out the paramedics have abd II feel very strongly it’s unfair and unjustifiable but have noted me as a nuisance caller but have to attend by law if requested but do not have to take me to the hospital which is what they have agreed they won’t take me anymore. The only time I have phoned for paramedics is when I have been told I must by a doctor over the phone or someone else has called them for me. At times I have been told of for not calling them by doctors and told I should have done. I feel I can’t do right for doing wrong, that I am just a nuisance and burden to everyone. I have written to my specialist in London explaining how I feel,and why and that I am in need of encouragement and support and copied the letter to my,Gp.
    That has made me feel better but whether they will take note and give me the encouragement and support I need and what i don’t know but you have given me hope and I will asked my GP about seeing a psychologist to talk through my feelings, CBT was meant to have helped with that but I had to answer set questions I just need to sit down with a medical professional who has the time to just listen to me without interrupting and saying your twenty minutes are up now.
    Sorry for rambling on so much but feel you are at least one person who may actually understand me.
    God Bless
    Penny xx
    .

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    1. Hi Penny, thanks for sharing your story so openly and honestly. My heart really goes out to you…..I know what it is to suffer multiple illnesses, especially those related to the mind with neurological difficulties, and how difficult it can be to get support.

      Chronic illness can be a lonely journey.but there is help out there….it’s just that sometimes we have to demand it. You’ve done really well to write the letter to your GP and specialist. I just hope you get the help you need.

      Computer based CBT was only ever meant to help with minor depression and anxiety, not with learning to cope with a major illness and the huge changes to life that brings with it. Have you thought of getting some counselling privately?

      I’ll keep you in my prayers ….thankfully God loves us and never abandons us in our time of need. I pray that you will experience a deeper sense of his presence.

      Hugs, Ian

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  2. Hi Ian

    This was an interesting article indeed.
    My daughter was diagnosed with ME however before that happened she was also sent to neurologist who decided it was depression and sent her to a neuropsychologist for treatment. My daughter was devastated as a diagnosis of depression rules out a diagnosis of ME and she and I both knew that this wasn’t depression (although, undoubtedly, depression played a later part – symptom not cause).

    As it turned out Dr Julie Goldman was an angel in disguise. She ruled out depression after the first session and in the next session she suggested that Maya had ME. We hadn’t mentioned ME at all so she’d come to that on her own.

    For the however many weeks, Julie focused on the main concerns of my daughter, namely her sleeping and her brain fog. She used the same tests that she’d use on stroke and Parkinson patients in an attempt to measure what the cognitive impairment was. She also gave her exercises to add with her recollection (something my daughter has a problem with) and her sleeping.

    The results were heartbreaking in a way as it showed that my daughter has quite high cognitive dysfunction. The up side was finding a doctor who wholly supported her and was on her side.

    best wishes

    Lisa

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    1. Hi Lisa, thanks for sharing your experience. I’m so glad that your daughter got the help she needed, and hope that she’s doing as well as can be expected. The cognitive dysfunction is one of the most troubling aspects of this illness, as is poor sleep, but just having someone listen and understand can be such a healing experience. Best wishes, Ian

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