Welcome to the Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts. As well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.
Phil O’Neil:
Hello, I’m Phil O’Neil. Thank you for joining us on the MS Australia Raw Nerve Podcast and today, we’re going to have a chat with Horst Bemmerl. Horst is the Chair of MSWA and a Director of the MS Australia Board and has undertaken some pretty amazing things as well. Hello, Horst, how are you?
Horst Bemmerl:
I’m well, thank you. How are you?
Phil O’Neil:
What we’re doing is speaking to Australians who are living with MS and have done extraordinary things in this podcast. And for you, the extraordinary thing was?
Horst Bemmerl:
We decided about five years ago when we were in Kota Kinabalu and went for a little tour down the base of the mountain when we saw some people in all their hiking gear commence their ascent, we thought that would be a good thing to do. That was five years ago and it was when I was five years younger. Because of COVID, we couldn’t do it for a while and we finally did it six weeks ago. It was a two-day trek that was particularly difficult. We stayed at a guest house, which was at about 3000 meters elevation. You got up at 1:00 AM to do a four-hour trek to the summit so you could watch the sunrise and you got about 20 minutes, half an hour up the top for that. And then you commenced probably what was a 12-hour trek all the way back down to base.
Phil O’Neil:
And it wasn’t just you as well. Special mention should be given to your wife Helen, who’s accompanied you on some of your crazy adventures. She has asthma and also suffers altitude sickness. I believe when you climbed Mount Kinabalu, she didn’t complain once and she never said anything about giving up. So a definite special credit to Helen there for helping you out. And were you affected at all by any of your MS symptoms?
Horst Bemmerl:
As you were probably aware, one of my biggest symptoms is fatigue and I’ve kind of struggled with that ever since I was diagnosed with MS in 2007. So it was a bit challenging and I’ve learned over the last 10 years how to manage it a little bit better. I would say to you that I took it easy and took lots of breaks. But my wife is one of these people that if there’s something to be done, it’s just got to be done and get ticked off quickly. So we probably got to the guest house a lot quicker than the rest of the team. We got there in about five and a half hours. The others probably took about eight hours. After that, we decided we could go slower. Every group had to have a guide, but there was just the two of us that hired the guide, myself and my wife.
And he was aware that I kind of needed to pace myself. So on the final bit to the summit, I actually at one stage said, “I don’t know if I can do this. I don’t know if I can go any further.” And he said, “Look, leave it with me.” And he was following us most of the time. But at that point, he went to the front and he took 20 or 30 paces and stopped for 10, 20 seconds and then he took another 30 paces and stopped. He did that for about an hour. Then asked, “How are you feeling now?” And I said, “I feel a lot better. I feel like I can go on.”
Phil O’Neil:
What about the temperature? Was that an issue at all?
Horst Bemmerl:
I do get the heat intolerance thing. It’s a funny thing, temperature because when you’re climbing a mountain like that in the tropics, it’s very hot at the start in the base. So, it’s like shorts, t-shirts, sweating like a pig, drinking lots of water. But by the time you get even to the guest house, it’s starting to cool down and up at the summit it’s around zero or one degrees. So I did overheat a little bit on the first day and I overheated a little bit at the very end of the second day when we got into that hot zone. I’m one of these people, my wife always says I’m in self-denial.
Phil O’Neil:
Yeah, we’ll talk about that in a moment. I’ve noticed that. Yeah, one of the quotes that came up in the paper that you put onto the website, Reaching New Heights, but for you it wasn’t denial, for you, it’s momentum perhaps.
Horst Bemmerl:
I don’t have any place in my life for doubt, so it’s not a thing that I surrender to. I just keep going because I have to, in my mind. People say, “Well you don’t have to…”
Phil O’Neil:
But you do, yeah of course. And more so I think than other people because you also understand the limitations of time as well.
Horst Bemmerl:
Yeah. And that is something I think maybe you’ve seen it in my article that I believe that you can turn the whole diagnosis of MS around. And I think that I probably did a lot more things than I perhaps would’ve because of that unknown factor. I mean, everyone has unknowns in their life, but because we have a known unknown, I did a lot of things, a lot of traveling and did those things I thought I should do while I’m able to. So luckily that’s kind of lasted 10 years now.
Phil O’Neil:
I hate to use the word blessing when it comes to an MS diagnosis, but there are blessings in as far as you suddenly realize that you’ve got to do everything that you wanted to do now just in the off chance down the track that you can’t. One of the things that MS people do when they get together is they talk about the first time they were diagnosed. And it’s not very often that you see parallels between symptoms. Yours in fact is very similar to my diagnosis and one of the first people I’ve spoken to that actually has a similar trajectory and certainly similar first symptoms because as we know, MS is just a jigsaw puzzle and anything could be the first sign of MS.
But I had like you, I had the numbing on the left-hand side of the face and also the numbing on the arm and moving down to the hand. There were other things that came before that which weren’t diagnosed, a couple of trembles and what have you. But when the numbing came that stayed around and I went and saw a chiropractor and he said, “Look, I think it might be a pinched nerve,” same as what you thought when you were self-diagnosing. But then you went and got the MRI and you discovered the actual MS diagnosis yourself. That must have been a very strange experience for you.
Horst Bemmerl:
It was almost surreal and similar to you, it was actually my physio that said, “Ah, it’s a pinched nerve and we should be able to sort that out quickly.” And I think it was the second or third visit to the physio where he asked me, “Is it a lot better?” And I said, “No, actually, it’s probably a little bit worse.” And he said, “No, I don’t like it.” And he sent me to emergency at Royal Perth Hospital, which I was in there for like most people’s experience, a whole night and got sent home and got called back and probably a series of few days this happened. And they said, “Well, we don’t know until we do an MRI. The public MRI is quite busy, we’ll have to wait two or three weeks.” And I thought, I’m not doing that. And they said, “You could get a private MRI and get the results sent to the hospital and we’ll call you.” So I did that, waited for the call and had none forthcoming.
Phil O’Neil:
You’d think with something like the symptom like this, you’d immediately get some kind of, “Can you come in and have a chat?” But I didn’t get that either.
Horst Bemmerl:
The neurologist at the hospital said he was going interstate and he was leaving at lunchtime Friday and he would definitely ring me before he went. And at lunchtime Friday and still no call, I went down to the Perth radiology clinic and picked up my results and opened it up and read it. And the usual technical terminology, the end conclusion was that the multiple lesions likely result of MS. And I thought, oh, that doesn’t sound too good. And I put it back in the envelope and I continued driving to work.
Phil O’Neil:
So you didn’t really know what MS was. I guess, like the rest of us it wasn’t something that you were that familiar with?
Horst Bemmerl:
I actually knew someone with MS, but it’s likes a lot of people say, you know, you think you know something, but until you walk in those shoes, you can’t possibly know. She was fairly non-symptomatic. So I didn’t really know the more detailed thing about MS. But as I continue to drive to work and reflected on it a little bit more, I thought that’s not really good at all. I think I’ll go home, made a few calls to family and my wife and that’s when it sort of sunk in.
Phil O’Neil:
Although you didn’t tell a lot of people straight away, I read that you kept it to yourself.
Horst Bemmerl:
Yeah, I did. And I say that probably was in the result of a couple of things. One was I mentioned that I knew a person with MS, she was someone I actually employed. And when she did her medical, it came out because she had eyesight issues that she said she had MS. She said, “Will you still employ me?” And I said, “Yeah, are you able to do the job?” And she said, “Yes, of course.” And I said, “I wouldn’t want to discriminate on the grounds of a diagnosis of MS.” So I employed her and she said, “Thank you very much because not many people do, most people discriminate. Because of that and because of when I first got diagnosed in the early days, a somewhat relative of mine knew that I had something not right with me. I hadn’t told them what was wrong with me but had reported me to the Department of Transport that I wasn’t fit to drive a car. And I thought, see, if that’s what people do with information, I think I will just keep it to family.
Phil O’Neil:
One of the things that obviously we’re trying to do with MS and you of course, by being part of MSWA as well, is not just to try and find a cure, but it’s also to educate the people. It saddens me that people are being discriminated against, especially in terms of employment because of an MS diagnosis when even people with MS aren’t experts as to what the outcomes will happen and whether or not it’ll affect your job. No one knows the answer to that. The general perception is, well, I won’t employ somebody who has MS in the off chance I won’t be able to work for me down the track. That’s a completely misguided interpretation and understanding of the disease. And it’s really important that we get that message out.
Horst Bemmerl:
Absolutely. I mean, there is this sort of ignorance if you like, amongst employers, maybe not necessarily their fault. To, add on to that, when I did decide to come out for one of a better term, I was very harmed to the response that I got. And my employer was so accommodating and I really was totally surprised in a good way to the reaction. They accommodated things for me. They wanted to learn more and understand more about what I needed. I then started to do a one day or maybe two-day work from home. Because the whole fatigue thing, I don’t know what it’s like for you, but for me, that getting up in the morning and going to work and coming home in traffic and day on day in. By the end of the week, my weekends used to be like, “I don’t want to do anything.” But just to break it up, stay in your pyjamas. They could tell I was more productive at home than I was in the office.
Phil O’Neil:
But also there’s no misconception or judgment about what you have. With a lot of people that shrug and accept it, that’s the best reaction I appreciate.
Horst Bemmerl:
We have different expectations of how they will react. But I think you’re right. I think an acceptance, I don’t like people to view me as being different. A lot of people have said to me, “Oh, do you have MS? Cause you look so normal.”
Phil O’Neil:
In fact, some of the healthiest people I’ve seen, I went to a convention and everybody there was so incredibly healthy because we’re all on these great diets and exercise. And for you, exercise is a very important part of your life too. Isn’t it?
Horst Bemmerl:
It always has been. I was quite fit when I got diagnosed. In fact, I was training for the City2Surf run when this pinched nerve thing happened. And I was probably in top 10% of people fitness-wise for my age. So it was always very important to me. And I sort of went into a little shell for a while to what does all this mean? And I stopped running and everybody has their own journey. My journey, it took a little while for me to say, “Okay, well, you’ve just got to go do what you need to do and want to do.” And I wanted to exercise. It was important. I mean, I kept exercising, but I just changed the exercise. It wasn’t long when I was back running again. Now, I don’t run so much because it’s more age related than it would be MS related.
Phil O’Neil:
And it’s funny you said that your wife said that you are the king of denial. That’s the thing about MS is denial and acceptance, two sides of the same coin. I mean, there’s a real dichotomy there, but you have to flip that coin from denial to acceptance in order for you to move further, I think.
Horst Bemmerl:
It is, it’s a dichotomy. For me, the denial was not so much that I had MS, it was denial about what MS would do to me. It was like I’m going to be in control of it, not MS being in control of me. My wife would say that because just not long after we got diagnosed, we were building a house and Helen, my wife, decided that she’d go to the independent living center to get some advice on what we should do to the house to accommodate me. And we built a two-story house and she was doing things like the large doorways to accommodate wheelchairs and the [inaudible 00:12:28] low PowerPoints and all these things. And I said to her, “I don’t want to know about any of that. I’m not building a house like that.”
In hindsight, I gave in on the wide doors and I gave in on the staircase being a lot wider steps. They’re good anyway for anybody. Great for as you get older, having wider doors and having steps that are easy to get up. I couldn’t let my mind think that we’re accommodating for me to when I get to the point where I’m disabled and I need wide doors, that’s my denial.
Phil O’Neil:
And I think that’s really important for a person with MS is to think about what the possibilities are and the positive. Because none of us know what is going to happen. It really is uncharted territory in every individual case.
Horst Bemmerl:
My wife actually said, “What will you do then if it does happen that you need a wheelchair?” And I said, “I’ll deal with that. If it ever happens, I’m not going to plan for it or think about it because my mindset is that it’s not going to happen.” Should that happen, then it would be a change to what I thought would happen and then I’ll have to adjust. But that’s how I deal with it.
Phil O’Neil:
So you became part of MSWA?
Horst Bemmerl:
Yes.
Phil O’Neil:
Can you tell us about, because you’re one of the longest serving members I believe on the board of directors?
Horst Bemmerl:
There’s a few that have been quite long, but currently I’m the longest serving director and I’m also the chair now. I think as part of the whole journey of MS and the acceptance or the non-acceptance, I did go to do some counseling with, and at that point in time it was MSWA provided counseling for members, which I joined up. When I got diagnosed, I kind of thought I didn’t need it, but in hindsight it was like a great thing. It opened my eyes a little bit and opened the world a little bit. And it was from the counseling sessions that I decided that I’m very fortunate with how I live my life. And so, looking at the positive aspect of having MS, what is it that I could do and it was I decided to join the board so that I could help others that might be less fortunate than me. And even those people like myself living with MS help to do more for them to live a better life.
Phil O’Neil:
And I guess, a lot of us initially when we get diagnosed, we naively go into as much Googling as we can for cure for MS. I think most type in cure for MS until you get to the stage where you go, “Well, okay, I’m going to have to stop doing this now.” The advances in medication and in science in MS are just overwhelming. I mean, I believe that we are probably pretty close to a cure. The other of course, issue is that for you it would be dealing with governments and trying to get their time to be able to provide for people that need help. How does that work out for you? I mean, how are you going in terms of getting the ear of the people that need to hear the message?
Horst Bemmerl:
It’s a long and arduous process that one. As much as you can be very critical of the government or the hierarchy in regards to that, it’s also understanding that it’s hard for people that are close to you to understand what you need and what you want. We’re making progress, it’s slow progress. My frustration is that when I see somebody, and you’ve spoken to the Chair of MS Australia, Des Graham, when he struggled to get any sort of funding with what we know and I know of what he goes through and what he requires. And then you see other people that don’t look like they really need much funding, getting funding, that’s the frustration.
Phil O’Neil:
Everybody I guess, believes that their need is the most important need. And I can understand that. But I guess, it’s just reinforcing the message, don’t forget about us. I mean, there’s not that many of us that have MS, but those that do, it’s the most important thing in our lives. So what’s next for you in terms of giving yourself a challenge?
Horst Bemmerl:
I’ve booked to go to do a section of the Camino de Santiago walk in Spain. I think it’s 174-kilometer section of it walking. Apparently it’s not as challenging in terms of the gradient and the hills and that have to do around 20 to 25 kilometers a day. Plus’s the next thing on the Kinabalu.
Phil O’Neil:
Excellent. Thank you so much for everything you’re doing for the community and also for the inspiration that you give us too, Horst.
Horst Bemmerl:
Thank you. And the only reason I do it, because people have asked why do these things and make so public is to help others. And I’ve said that I would’ve loved to read some stories when I was first diagnosed. I wanted to hear more of the positive aspects. And so, that’s why I do it. And I know that’s why you do it.
Phil O’Neil:
That’s right.
Horst Bemmerl:
Really, thank you to you too.
Phil O’Neil:
Thank you so much for your time. I really appreciate that.
Horst Bemmerl:
Thanks for your time, Phil.
Voiceover:
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