Living with autoimmune disease
An interview with a multiple sclerosis warrior.
Diagnosing an autoimmune disease is a challenge. It could take months and multiple appointments with different medical specialists before the doctors can arrive at the conclusion. But an even bigger challenge is living with the disease, day by day, constantly engaged in a battle with your condition.
For Amanda Windhof, PhD, it took almost a year to discover the reason for her strange symptoms — an impaired vision in one eye, which she only noticed during her workouts. It turned out that the symptoms were not so strange after all. One of the telltale signs of MS is the appearance of symptoms when the body’s temperature rises, which most often happens when we exercise.
Today, Amanda runs blog — www.mymslifestyle.com — where she shares lifestyle tips for MS warriors, the term she uses to identify herself. Below is a full interview with Amanda, which we conducted for our feature story about the effects of salt on our immune system and its potential role in the development of autoimmune diseases.
Amanda, if you don’t mind telling us — what does it feel like to have multiple sclerosis? And how did the doctors arrive at your diagnosis?
You know, it’s very individualized. Each person’s journey is different but there are a few things that seem similar. In my case, the optic nerve in my right eye was affected first. Which means that my vision was impaired but only in one eye. It just felt like there was something in my eye, which I noticed when I worked out. MS is very heat sensitive so I only noticed the symptoms when my body would get too warm. That’s a classic symptom.
And all of this happened just as I had stopped nursing my 10 month old daughter. And then it went away so I didn‘t worry about it until about eight months later it came back. This time it didn’t go away so I went to an eye doctor. Of course nothing was wrong with my eye. And then it went down the path where I went to a neuro-ophthalmologist, and they thought that maybe there was some kind of pressure on my optic nerve. So I got eye drops that I put in but nothing really changed.
And then they ordered an MRI. I remember that I was sitting in the neuro-ophthalmologist’s waiting room and there were all these magazines about living with multiple sclerosis. And I really I didn’t make the connection but I think that the doctor already knew. But he couldn’t diagnose it so I had to go to a neurologist who looked at my MRI. There is a telltale pattern for MS on an MRI scan, in places where MS lesions occur. They can occur in your brain and spinal cord, and I actually had both.
Wow, that’s quite a story. You are a scientist by training, did this affect your reaction when you heard the diagnosis?
To be honest, after the diagnosis I didn‘t want to read anything about multiple sclerosis. It was scary to look at the way the disease could progress. I didn’t want to do anything at all so I ignored it. I pretended like — oh, you know, it’s fine. I’m not going to worry about it. My husband was actually the one who dug down and found resources on how you could change your diet to live a healthy life. It can actually empower you to be able to potentially impact the disease. Of course, it’s highly disputed but I believe that a diet can impact disease progression and there is evidence that it can lead to better outcomes.
The problem I find is that so many doctors are so quick to push back and say: „No, there’s no specific diet.“ While that may be true, it also deters patients from taking that step of just being healthy. If your general health is good, it’s going to help with whatever condition you might have.
So it was your husband who inspired you to become a nutrition advocate.
Yes. He pointed me to a resource called OvercomingMS. It’s a program started by an Australian professor, who himself had MS. His mother also had MS, as far as I know. So he went through the literature and used all of the scientific research to devise a nutrition plan for MS patients. It seems that doctors and academia are more open to diet and lifestyle changes when they are themselves affected by the disease. A lot of factors have been shown to have some kind of impact [on the disease progression] but he concluded that a diet low on saturated fat was the key. It’s similar to a Mediterranean diet but without dairy products. That’s what I followed.
Of course, OvercomingMS is more than just a diet. It’s a lifestyle, which also includes daily meditation, ensuring that you get enough vitamin D, adding flax oil to your diet because it’s high in omega 3 and eating fish. So there’s a few stages to it, all outlined on the website.
What about salt, does your nutrition plan include guidelines on that?
You know, I’ve seen both sides of the research on salt. Some say that a high salt diet can increase your chances of a massive worsening of the disease. And then there is research which says that salt doesn’t make any difference. I think it’s all about moderation.
In any case, a high salt diet isn’t good but you do need some salt. I’m not sure what the threshold is, I don’t think anyone really knows.
But do you still try to limit your salt intake?
Yes, for example, I do not eat food that is processed but prepare everything from scratch.
Right, you’ve got that wonderful collection of recipes in your blog. How did you come up with them?
I took my inspiration from the OvercomingMS website.
They do have their own recipes, which is basically vegan cooking. But sometimes you can’t just follow a vegan recipe — they often include coconut oil, which I do not eat because it’s so high in saturated fat.
They also came out with a cookbook, which helped me. It helped to learn how to mix the ingredients together. For example, if you blend a 1:1 mixture of cashews and water, you can make a substitute for heavy cream. I didn’t know that before. I try to incorporate different quantities from different recipes and it’s really just a lot of experimenting. And deciding what I think tastes good.
Is it difficult to find the right ingredients?
Sometimes it is, but it got a lot better over here. I live in a small city just north of Columbus in Ohio, but our grocery stores have pretty much everything I need. Just a few specialty items like, for example, miso paste can be hard to find. And for some reason flax oil has become more difficult to find, so I travel to Columbus for that.
Did you discuss your nutrition plan with your doctor?
I did, but I experienced so much pushback it was frustrating. My first doctor basically dismissed it and was recommending me donut stores I should go to. Then I found another doctor at the Cleveland Clinic and they are much more embracing of my lifestyle. They definitely supported my diet.
But still, whenever you go to the doctor here, they all concentrate on the medication side but never really ask how much I exercise or what my diet looks like. And even that would be pretty much ignored if I didn’t proactively say something.
And do you feel that your diet makes a difference in your day-to-day life? Do you actually feel lighter or stronger?
Yes, all of the above.
OK. That sounds encouraging.
Yes, although I didn’t notice a drastic change at first — it was more gradual. But I’ve been doing this diet for over three years now and, honestly, I can’t imagine not doing it.
I would even say if some day there is a cure for MS, I would still follow this diet. Although, maybe once in a while I would have a chocolate.
Are you in touch with other people with auto-immune diseases?
I am. Although it took me about a year and a half after my diagnosis before I reached out to anyone. At first, I was just focusing on myself, not reaching out to anyone or trying to make connections. My husband, again, was the one who pushed me in the right direction. He found a woman who was part of the iConquerMS community, an initiative through the Accelerated Cure Project for MS.
It’s an initiative where they collect patient reported outcomes — they send you surveys every six months, ask you about your life and how you feel in general. But the part I really liked was that they asked patients to suggest research topics, which are important to them. They try to partner with research facilities and make that research happen.
Apart from nutrition changes, what else would you recommend to people living with MS or other autoimmune diseases?
The biggest thing is movement, in any way you can. I try to get 10000 steps every day. I know that walking isn’t always available to everyone but — in whatever way you can — try to get outside, close to nature. I often go outside for a walk and try to exercise between three to five times a week (I do cardio and strength training). There is so much evidence that exercise and movement is good for your overall health and brain health.
The other thing is stress reduction, of course. For me, it’s just half an hour of meditation a day, right after I come home from work. My husband usually watches our daughter then so I have this time to myself.
Any other advice?
Don’t be too hard on yourself. Just do what you can and if you struggle with it, maybe just ask for help. Don’t turn away from help. I think that’s the hardest thing for a lot of people and I’m not different in this respect. I always like to think that I can do it myself. But you know what? Sometimes you just need help and that’s OK.
I only recently joined a support group and I wish I would have done that earlier. They’ve really helped me to decide on the next medication, which I want to take.
I am very careful and do my own research on the medications. The side effects of MS medications, especially in the long term, can be horrible. But talking to people who have taken these medications really helped me.
Could you tell us briefly the medication you are taking and its side effects?
Well, I’m going to start a new medicine in May, called Ocrevus. It’s a humanized antibody, based on a medication that is used for rheumatoid arthritis. I was previously on Gilenya for about 2.5 years and before that copaxone for 6 months. Gilenya is a once a day pill. The new medicine is an infusion that you get every six months.
My biggest concern though is that it’s an infusion, because my veins are horrible and I always have issues getting an IV. But I’m assuming they’re used to working with people worse than this. So I’ll just leave it to the specialists and see how it goes.
The acute side effects, as far as I know, are potential allergic reactions. And the long term effects are what you would expect from an immune suppressant therapy. This medication targets the B cells and I think it clears them initially, which means that it will take about 6 months six months for your immune system to recover. That’s why the infusion is being done every 6 months.
Other long term side effects are, of course, the suppression of your immune system, which means higher cancer risk and higher risk of infections, from a simple cold to a brain infection. It’s one of those — whenever you are on any kind of immune suppressive medication, it will always stay in the back of your mind.
Does your employer know about your condition?
Yes, my employer does know that I have MS. I didn’t tell them initially, only when I saw that it might impact my job and I wanted to know what resources might be available. I first went to HR and then to my bosses. They were all very understanding and supportive. I am very lucky. However, I didn’t tell any colleagues until quite a bit later. Since I have changed my diet dramatically, people noticed and at some point I wanted people I work with to know why I am doing what I do. I have told the people that I work with closely…but of course now that I am pretty vocal with my website and on LinkedIn, a lot more people at work know. I have only encountered support and kind words, and actually found out that many, many people have some sort of connection to MS, be it friend of family member that has it.
Thank you so much for sharing this. The very last question: you mentioned the word „warrior“ on your blog and being an MS warrior. Could you tell us what it actually means to you?
Yes, I’d be happy to. What I wrote in my blog was how I felt about it.
I used to be kind of cocky and thinking: oh, nothing’s happening to me. I’m doing everything right. The disease doesn’t seem to be progressing. And then you realize that even when you are doing everything right the disease can still hit you and knock you down. But being a warrior doesn’t mean that you’re not going to get hurt or hit. It just means that you keep going and you don’t stop. You use everything, all the tools at your disposal and just keep moving forward.
