Marissa: Welcome to the “12 Months, 12 Journeys, 12 Lessons” Podcast. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guest. My name is Marissa Christina from Abledis.com and today we have someone special in our midst.
Rhiann Johns was recently diagnosed with a brain stem lesion and is also battling a condition called spastic paraparesis. Despite living with health problems throughout childhood and those often turbulent teenage years, Rhiann has pushed through and was able to obtain a degree in Psychology.
I have a special surprise today. I’m featuring not one, but two, lovely guests. I want to welcome to the show my friend Rhiann and her lovely mother, Hilary. Welcome, ladies.
Marissa: This month’s 12-12-12 project is focused on understanding brain stem lesions. Rhiann, let’s just jump into it. Can you help us understand what a brain stem lesion is?
Rhiann: A lesion refers to any abnormality in the tissue due to damage or disease. In my case, the lesion is located in the brain stem. That’s why it’s called a brain stem lesion.
Marissa: Recapping, brain damage can come from anything like inflammation…
Rhiann: Infection, bang on the head.
Marissa: In your case, you’re saying that the brain lesion resides in the brain stem itself.
Marissa: Hilary, hopefully you can shed a bit light for us. Did you notice any symptoms early on in Rhiann’s development that might have alerted you that there was a problem?
Hilary: No, not really. It is only where the nurse come round to check Rhiann. It was the day after she was born. She held her in the palm of her hand and had her legs out rigid and the nurse just said, “She shouldn’t be doing that. We think there’s a problem.” Two days after she was born, I had to take her to a brain scanned. I wouldn’t have known myself.
Marissa: That was the early onset of the symptoms. Rhiann, you talked about on your blog that the symptoms started showing up when you were about eight years old. Can you take me back there? What were some of the significant symptoms that you started feeling when you were eight?
Rhiann: I’m not sure whether I did have symptoms before the age of eight. That’s when I vividly remember them starting. We were out shopping for wallpaper in the local DIY Store. Out of the blue, dizziness started. I felt very sick and dizzy. I had to grab on to my mother’s hand because I thought I was going to fall or faint.
Marissa: Did you at that time immediately go the doctor, mom? Did you start saying, “Let’s go get this checked out,” when you started to complain of the dizziness?
Marissa: So you guys headed into the doctor and they ran a battery of tests?
Rhiann: They sent me for blood tests. They said I was very pale. They thought it might be anemia so they wanted to get me tested for that. The tests showed absolutely nothing and they just sent us on our way.
Marissa: Wow, so no diagnosis. They just said, “Okay.” Did you continue having symptoms as you went into primary and secondary school there in Wales?
Marissa: Did you start to continue to have symptoms? Did they increase?
Rhiann: From what I remember, they increased and they were much worse when I’m in a building with a high ceiling, like when I am in large department stores, supermarkets – those kinds of buildings. And if I stood up too quickly it would brought on. I remember having to sit on the floor during assemblies at school. As it finished, we have to stand up. That used to bring it on.
Marissa: Goodness. Here you’re going through primary and secondary school, and we know school as a young child is sort of hectic and now you’re going through with all these additional symptoms. What was it like for you in primary and secondary school? What was your experience like?
Rhiann: I didn’t find primary too bad. The primary school where I went was only a very small school, so it felt more like a community there and people were supportive. I think that, at that age, children don’t seem to be as judgmental towards children with problems and with disabilities. They just tend to see the person as they are.
I found going into secondary school was much harder. We had to do P.E. in the large sports hall and I found that very hard to cope with because the hall was very large and with a very high ceiling.
Marissa: How did the other kids respond to you in the secondary school?
Rhiann: Over the first couple of years I had a few friends and I used to go out with them with their family and I used to have the dizzy spells. It wasn’t a problem until about year into it. I would have been about 13 or 14. Then this friend (or so-called friend) just turned on me and started ostracizing me from things. She would talk and turn her back completely away from me. She would whisper in their ear and start to laugh. I started spiraling down after that.
Marissa: What a rough time. Hilary, as you hear Rhiann recalling this moment and these memories and thinking back to that time, what was it like for you as a mom seeing Rhiann go through this?
Hilary: Very difficult. I knew she was having problems. She didn’t always tell me everything. When she got a bit older she started confiding to me a bit more. When she started to do her A-levels, I wanted her to come out of school and go to a college to do A-levels because I knew she was having such a rough time at that stage.
But she wanted to stay on and do A-levels in school because she thought she’d stand a better chance if she went to a university, if she’s done A-levels in the school and not at college. It was very, very difficult. I still get a bit choked thinking about it even now after all these years.
Marissa: To give you guys a credit because it’s not that you had a diagnosis. I’m sure that as you were going through you were hoping to go to the doctor and that they would give you a diagnosis. Did they ever say, Rhiann, that there was an anxiety issue, a depression issue? Did that ever come about?
Rhiann: Yes. It was towards my 16th birthday. Because of the severity of the dizziness, I wasn’t able to walk anywhere on my own because it was so bad. So my mom would have to walk me down to the bus stop. Even standing at the bus stop, you’re living with dizziness know that standing in the one place all the time is very difficult with the dizziness. Even that was really difficult and I used to panic.
My mom was walking me one day to the bus stop and was just going to leave me there. I just had a complete meltdown. She immediately phoned the doctor and asked for an emergency appointment. We went down there and we saw a nurse practitioner; so it wasn’t a doctor. She was the one who diagnosed me with anxiety and depression. She was going to refer me onto a child psychologist or psychiatrist and prescribed me some antidepressants as well.
Marissa: A devastating diagnosis. Did you feel relieved that there was a reason why you were going through these issues?
Rhiann: It was a bit of a relief and that there was a name to it and I wasn’t going completely mad or I wasn’t imagining things that weren’t there.
Marissa: Listening to the story, I have to commend you because despite the difficult situations, you pressed forward and you still attended university. Can you talk about what things were like at the university living with what you believe at the time was anxiety and depression? How was that like moving into a university?
Rhiann: It was difficult. Going there was very nerve-wracking. Still living with chronic dizziness, I had to get a lot of support from the university themselves to go and study. They provided me with a buddy system where I’d have a support worker to accompany me to lectures and to then drop me off at a designated place where I’d be able to get to my father’s car easily when he came to pick me up.
Things got worse during my second and third year. They provided me with extra hours with a support worker who was able to take me to the library to research my assignments and to the computer lab to do work. I also had computer equipment for that so that if I wasn’t able to physically attend lectures, I was able to download the lecture notes. They provided me with a Dictaphone because I would find that my concentration wasn’t great and I would easily forget things. So, I was able to record all my lectures and play them back at a time where I maybe could take in more.
Marissa: Let’s back this up. From childhood to pretty much actually probably teenage years to adulthood, you believed your main diagnosis was anxiety/depression. Did you start questioning at that time when you were in the university that maybe something was a little bit different or more than just anxiety and depression? Because you’re explaining some additional symptoms here.
Rhiann: Yes. At the time when I was at the university, I was referred to an occupational therapist. I had this lovely lady called Rhiannon who used to come into the house and used to take me to places where I might feel anxious and uncomfortable. We went to the big stores where I felt all these different symptoms.
A few times we went to the university itself and she noticed that there were some certain triggers that would set me off such as coming up the stairs, if I had to go down some stairs. It was like my body would tip forward. And again with the high ceilings, there was one of the halls in the university which had like a sloped ceiling, I found that difficult.
She had also done a psychology degree and she said something about my problems seemed to have perceptual element to them, that it’s like I wasn’t seeing the world as everyone else was seeing it.
Marissa: At that point, did it help you to head back to the doctor? Did you feel confident to get back in there and start running additional tests? What happened after that point?
Rhiann: I was not a great advocate for myself. I’m not very assertive or I’m not much self-confident so I didn’t have that confidence to go to the doctor’s office and say, “I don’t agree with the diagnosis that I’ve been given. I think it might be something else.” At that point, I didn’t go see anybody about it.
Marissa: Mom, when did you start encouraging? Did you start encouraging Rhiann to maybe look into additional options?
Hilary: I can’t remember when it actually was.
Rhiann: It was after I finished university. At the time I was enrolled in a course at a local organization called Interlink. The course was called roots to recovery and was for people with long-term mental health problems.
At that time during the course, there were speakers coming in to talk to us. Then one week there was a nurse. I can’t remember her exact title, but she was a specialist nurse. She had quite a wide range of qualifications and areas in which she was an expert. She worked a lot with neurological patients.
As I was talking to her and explaining my symptoms, she told me that she wasn’t convinced that it was totally an anxiety and depression problem. There seemed to be signs which there may be a neurological problem going on.
Marissa: At that point, did you make a decision to head in or were you still reluctant?
Rhiann: I was reluctant, but I made an appointment anyway. I had one of my parents come in with me to encourage me.
Marissa: Were you given this diagnosis about that time brain lesion? Did they do neurological evaluation?
Rhiann: No. They wrote up a letter for referral to go and see a neurologist at the hospital.
Hilary: Yes. The first neurologist we saw I did mention about because he was niggling at me all the time about when she was born. They thought there was something wrong but of course they either didn’t show up on the scan or they just didn’t know what they were looking for. That’s all at the back of my mind. I mentioned it to him and he just looked at me so silly. He said, “I don’t know what to make of that. I’ll keep it in mind.” I thought to myself there’s got to be something more in there.
We left the hospital and we had to wait a while to see another neurologist. We saw him, he did a few tests, and he asked us questions. He had a look at her legs. He was checking her legs and he said, “I want to have a look at the scan again.” So he went away to another room to have a look at the scan. He came back and he said, “There’s nothing on the scan.” But he asked me, “Was it a natural pregnancy, a normal birth?” I told him about after she was born. He said, “Yes. It’s a long-standing brain stem lesion either during or at birth.”
Marissa: At this time, was this where the neurologist brought up the spastic paraparesis? Because you said that he checked the legs.
Hilary: No. he didn’t actually tell us that. He put it in his notes to our doctor. It wasn’t until Rhiann asked our doctor for the letter the neurologist sent him that we read about it. He didn’t tell us himself about her legs. He just said that it’s a long-standing brain stem lesion. He said it’s stable and he said there was nothing they could do.
Marissa: There really wasn’t a prognosis or it just was stable and that’s it? He didn’t send you on for additional testing?
Rhiann: I think his thinking there’s nothing more they could do, so it’s really not worth it.
Marissa: Rhiann, it’s pretty interesting because at that time it had to mean a lot to you to get that solid diagnosis. But then were you mixed with emotion in terms of it just being “That’s all we can do”? What was it like for you guys?
Rhiann: It was upsetting because obviously there was nothing that they can do, not being able to get rid of it. I’m stuck with it now for the rest of my life. That was pretty hard to deal with. But then there’s the relief of having a diagnosis and justification that I wasn’t going mad and it’s not in my head.
Marissa: It’s unbelievable. Basically, you had to educate yourself on what spastic paraparesis is.
Marissa: Can you explain to us what spastic paraparesis is?
Rhiann: The “spastic” refers to spasticity. Spasticity is often referred to the stiffness a patient reports who’s exhibiting the condition. If you think about the muscles in the human body, each of these muscle groups has a muscle which flexes at the same time the muscle relaxes. However, in spasticity, both of the muscles flex at the same time resulting in increased resistance to the movement than they would be normally.
Marissa: What are the symptoms for you, Rhiann with this? Leg weakness?
Rhiann: They’re very stiff and heavy. Obviously it’s a bit of discomfort when I’m walking especially if I’m walking a lot; they tend to really hurt. In Wales ,it’s very hilly. There are lots and lots of hills, so it’s problematic if I have to walk up a large hill. They’re very painful.
“Paraparesis” refers to weakness of both legs; stiffness. The legs feel very weak. I find that I can’t stand for very long before they give way and I collapse.
Marissa: Good grief. So you still have the dizziness component and then now you have the paraparesis for both of the legs are giving out and stiff.
Rhiann: I’ve always had the stiffness in the legs from as a child. But because I hadn’t had the diagnosis, I thought everybody’s legs felt exactly the same. I didn’t realize that there was a problem with the legs until I saw the letter.
Marissa: That is fascinating. Are you currently using mobility aids like a cane or crutch? What are you using right now? Do you need assistance with walking?
Rhiann: I need assistance walking outdoors. I have a bright pink crutch I use. But when I’m out, I find it easier to hold on to somebody, especially because of weakness I often will sort of crumble on the floor and my dad just sorta picks me back up.
Marissa: This is going to lead me into a recent blog post I read about you. You mentioned something about social services. Hilary, how did you learn about social services? How did that become a resource option?
Hilary: I was talking to a customer while I was at work. She works for the social services. She helps a lady with epilepsy. Obviously she couldn’t say too much because nobody’s supposed to. But I was telling her about Rhiann and she said, “Why don’t you phone social services? They can take her out when you can’t. If her condition gets worse, then she’s going to be needing more help.”
I didn’t really think of social services until she said something and I thought, “Okay.” So, I did. I phoned them. I think it was a couple of days later, they phoned to give us an appointment and they came to see us. I thought they will be a big help.
Marissa: That’s great. It sounds like that is one step in a positive direction. Rhiann, what are you hoping to achieve with social services? What are you hoping to get from that?
Rhiann: They’ve put me in for a service called “Lifeline” which provides an alarm which you wear. If you have a fall or you’ve severely injured yourself, you can press this alarm and it will alert the social services and also an emergency contact that you provide – it would either be my mom or my dad. They’ll be contacted and say something’s happened to me and I’m unable to get home.
They put me in for an application for a service called “Direct Payments” where they give a grant. The money from this grant then is used to employ somebody to come and take me out into the community whether it be going to the cinema or going to swimming in the local leisure center or shopping or wherever I needed to go. Then I’d be able to have somebody to be with me.
Marissa: This is great. I can’t let you ladies go without asking you individually. What do you feel that this journey has taught you? I’ll start with Hilary. What do you want to share with the listener? What do you think is the lesson here that you want to share?
Hilary: Mother does know best. I suppose I picked out things early on, but nagging at the back of my mind, when she was born, I should have listened more. As I said, mother does know best. That’s all I could say.
Marissa: That’s well said. Rhiann, what lesson did you want to share?
Rhiann: I would say trust in your instincts and our own bodies. I think we all know when there’s something going on with our bodies. Be more assertive with doctors. Push more being referred to testing and for getting a diagnosis.
Marissa: This is fantastic. I love you ladies. Thank you for being open to sharing your story with me and with the listeners.
If you want to learn more about Rhiann, please check out her blog http://brainlesionandme.wordpress.com/. Much love.