jakub Name: Jakub

Age: 43

Where do you call home? Czech Republic

Education: I have a PhD degree and I work as a researcher at the university. FA keeps me from working in the lab, however I like mathematics and programming, so I can do a lot of things for others – some advanced mathematical evaluation of experiments, numerical simulation, simple apps. Despite FA I still feel like a valuable member of our research team.

Who do you live with? I live with my wife, we have two children: daughter (14) and son (10). We have two black cats.

What is a typical day for you? I wake up early, after a “morning recharge” (cold shower, exercises) I transport to work. My wife helps me to walk from the car. I have an office on the second floor, so it is 63 stairs. I have to hold the banisters and it takes about 8 minutes, but “use it, or lose it” – it’s just the next exercise. I have the keys to lift, but I use them only if I feel really sick. I am sitting at the computer at work, but I exercise every hour. After midday, I eat my first meal. After work it is time to use the lift, the way downstairs is more difficult than upstairs. At home, I do what is necessary, or I do something with the children, or I just rest. After dinner I am going to sleep. During weekends I usually do not exercise, I rest, or we have some family program (trips, games, some work in the house or in the garden, etc.).

How long have you known you are living with FA? 19 years ago, I was diagnosed in 2003 with FA based on DNA. One of my hobbies at that time was historical fencing (both Gothic -full plate armor– and baroque -musket and rapier- style). I took a one year break in training due to MSc thesis. After that break, I was not able to get to the previous level, despite training very hard. I was hospitalized at neurology, they found some issues, but not the cause. DNA diagnostics proved FA.

Are there others in your family with FA? No.

Describe an adaptation and/or transition you have had to take due to living with FA. Approximately six or seven years ago I was able to walk without any help. I started using trek poles for longer distances. Consequently, I had to use trek poles every day. After three years I had to switch to forearm crutches. I got a walker approximately one year ago. For everyday use I have crutches, e.g. I use them in work, for longer distances I use the walker. However, walking with forearm crutches or a walker is slow and exhausting. Therefore I am looking for a wheelchair at this time. Not for daily use, but for longer distances.

For outdoor transport, I often use the tricycle. Buying a tricycle was a great deal. However, this is a solution just for the outdoors.

jakubWhat do you like to do to stay active and what type of exercises work for you to stay strong? I am trying to live as healthy as possible. I have tested a lot of exercises. I think that the basic key is consistency. Doing perfect exercises once a week or once a month is much less efficient than doing some little worse exercises every day. Everybody should find a kind of exercise which will allow them daily practice. For me, there are two basic systems. First is neigong/qigong – an old Chinese system of inner exercises (breath, physical exercises, visualization, meditation). The second system is Resets according to Original Strength. This is a system of exercises based on the movements of small kids. These two systems are ~80% of my exercises. Good master/teacher is of course very important, mainly in the case of neigong/qigong

Do you have any hobbies or special interests? Exercising, fishing, nature and outdoor activities, DIY-ing, studying of old stoic philosophy. Cooking with my wife, playing games with my children.

What is a good trick to make daily life easier? It’s hard to say. I use many small tricks – everyone is small, but together they are very strong. I do not want to be long and boring, so I mention just two tricks, which I consider very important –or better to say- they are good in my case. First one is sleeping/relaxing and the second one is a diet.

I sleep 8 hours daily. This is one of the most difficult healthy habits. Eight hours is a very long time and it is not easy to keep it up every day. I mean really every day, not 6 hours during the week and 12 hours on weekends. FA is a metabolic issue and it brings problems with energy. So sleeping 8 hours every day is a way to fight against this. Of course, relaxation, meditations and rest in general help. And they help very much. But a good sleep is a base. Second habit is a diet. For the last seven years I have been eating a low carb high fat diet. In the past I used to have hypoglycemic states – I needed to eat every three hours, otherwise I felt sick. I now eat two times per day and I feel much better. Of course these two meals are bigger than the standard portion. And sometimes I even skip one of them without any problems. So this is a big simplification of everyday life. The diet works in my case, but there is no guarantee that it will work for others, so find what works for you.

When FA gets you down, what do you think/do to feel better? I have to be happy for the things I have. E.g. I have a perfect family – wife, children, brother, parents. Many people, even healthy, do not have this good.

What is one way living with FA has POSITIVELY affected your life? Despite this situation being difficult, especially for children, it can be contributive for them. They see and know that dad needs some help, and they learn that some things are not cheap. This can help them in their future lives.

What is a favorite motivational quote of yours? “Life's like a play: it's not the length, but the excellence of the acting that matters.” – Lucius Annaeus Seneca

What piece of advice that someone with FA has given you that encourages and inspires you? Unfortunately, I know only two other people with FA, and only briefly. One of them inspires me and ensures me indirectly about the importance of family, will for life, and exercising.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Do not panic, FA is not the end of the world. Remember you are a free person. Freedom also means responsibility and you (and nobody else) are responsible for your life. Other people can help you and can give you some advice, but you have to work very hard and nobody will do it for you. Do not be afraid of experiments, but carefully interpret the results. You must try what is good for you.

What is the first thing you want to do when a cure/treatment to FA is found? I would continue living my life similarly, like today. Lot of my habits are healthy in general, there is no reason to change them. But if I was really cured, I would probably spend more time in nature/mountains. This is the thing which I miss the most. Anyway, this would be a great opportunity to thank all the people helping me.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? It can be motivating for somebody. But I have a slightly different view. I know that sometimes in the future FA will have me and will get me down. I will do all my best to postpone this time and I will do all my best to live a meaningful life until it comes.

Tell us a little more about you... Well, what to say and what wasn’t said… I used to be a very active man. Scouting, hiking, and historical fencing were the main activities. From my point of view, I was lucky twice. The first was an early diagnosis – I felt I had some problem and I wanted to solve it. Therefore I had a lot of time to “prepare for the battle”. My second luck was that I was used to moving a lot. These two circumstances enabled me to sustain some conditions up to now. And I was active to test various exercises and various “life-hacks”. Of course there were a lot of errors, but trial/error methods will always have some. As I have said, other people can give you advice, but the work and hard everyday work is your task. But the biggest luck in my life was to meet my wife and to decide to live with her. I think that due to my family I am more happy than the majority of healthy people.

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