A disease with a thousand faces

Henriette Lamprecht – Their’s is a story not of tears and hardship, but one of dedication and true love that encompasses the debilitating and devastating effect that Multiple Sclerosis has had on their lives.For 23 years Sigi Werrlein has stood by her husband Hein (59) who was diagnosed with a severe form of the disease at the age of 38. Today Hein can only use his eyes to communicate with his wife, but their faith in God and their love for each other, makes them an example of celebrating what is good.Hein grew up on a farm in the Khomas Hochland. He loved the farm life, but had to sell it in 2012 due to his illness. The couple then moved to Swakopmund permanently.“At first we went out quite a bit. Hein was in a wheelchair from 2002 to 2005 and Swakopmund was a good choice because it is wheelchair friendly, especially the boardwalk along the ocean,” Sigi says.She says that Hein already had “weak” legs and numbness as a child. “In his teenage years, he again experienced weakness in his limbs, this time in his right leg. He could not do sport for a while and nobody knew what was wrong.”In his twenties, he again began experiencing a tingle in his hand and his right side became weak. As the years progressed, symptoms like numbness in one of his legs, dizziness and problems with his balance became recurrent, with doctors baffled about what it all could mean.“One doctor even thought it was psychological,” Sigi says.After numerous tests and doctor’s visits, Hein was finally diagnosed with the disease by an MS-specialist, Dr. Christo Coetzee, in 1995 when Hein was 38 years old. He was told he had a chronic progressive form of MS, which is the most severe kind. In spite of the diagnosis, Sigi and Hein remained at the farm for another eight years. Hein moved around with the help of crutches, then a rollator (walker) and finally a wheelchair as his condition gradually worsened. Her husband’s diagnosis changed their lives forever. Today, Sigi describes their lives as “very restricted” in every way.“We can’t go out anymore, things like shopping, travelling and holidays are difficult. It also restricts our social lives severely, although we still try to invite people over.”Most people, especially men, rather decline a visit, “as they have a problem seeing Hein like this”, Sigi says.She recalls a bad experience the couple had at a birthday party when a lady told the couple “it was a disgrace” that they attended and had “spoiled” her evening.“Luckily we do not mix with people like that anymore. People stare a lot and then one tends to withdraw.”However, Sigi says that not all MS-sufferers’ paths are the same. “Hein has the most severe form of MS, but that does not mean another MS-person’s path is the same. His condition should never discourage an MS-sufferer, but rather bring encouragement.”For Sigi this is Hein’s road and one she gladly shares with him.“I am accompanying him, as he would have done the same for me.”Hein cannot move any of his limbs and needs to be turned at night. His legs and arms need to be exercised, using passive exercises to bend them.He also has a feeding tube, mostly for liquids and the approximately 1.5 litres of water he consumes every day. His sub-pubic catheter (a catheter to the bladder that goes through his abdomen), needs to be rinsed daily with sterile water. As he cannot move his limbs, Hein uses his eyes to communicate.“He talks with his eyes. You have to see this to understand. As we are very close, I can read his eyes and what he wants.”Sigi and Hein have an alphabet, with Hein looking at a letter and then spelling a word letter by letter. “Our caretakers are also good at reading him.”The eye-tracking computer the couple used to communicate with in the past does not work anymore. “One of his eyes is weaker than the other one and the computer can’t correct this.”At eight in the morning one of Hein’s caregivers arrives at the Werrlein’s home. First his catheter is emptied, then he is washed and shaved before he has a highly nutritious breakfast.“Hein has his own recipes. He likes banana, honey, sorghum, peanut butter, apples, pears, and vegetables. Part of his daily diet usually includes sweet potato, butternut, olive oil, a pinch of cayenne pepper, turmeric, ginger, garlic, cream, cream cheese and sometimes chicken and game.”All the ingredients must be part of a mixture and pureed into a porridge. Hein is fed with a teaspoon, a process which can take up to 30 minutes.“I usually make a large quantity of a variety of foods that include proteins and vegetables. I freeze portions of about 500 g each and use it as needed.”Hein loves seafood pizza and of course Sigi made a plan to indulge her husband’s wishes.“I put it into a blender with cream. It makes a delicious paste. It looks horrible, but it is edible!” Hein watches TV a lot, Sigi says, and sometimes the couple has a friend or two over to read to him.“I try to invite people to our house as we hardly go out. He likes to join in, even when I have a circle of lady friends over.”It is extremely important for her that Hein is part of her daily life. “I share everything I do with him, what I experienced and also my frustrations. I like to involve him in decision-making and I respect his advice in spite of his handicap.” Her husband has a “fairly strict routine”, allowing him to spend time out of his bed in his wheelchair. Hein loves to listen to Channel 7 and actually won a prize in one of the stations’ game shows.“He dictated the answer to me, with me hurrying back to SMS the answer to the radio station. It would be nice if they could do this again.”The emotional and physical toll of caring for a chronically ill person can be devastating, with focus rather on the patient than on the caregiver. Since 2006, Sigi has tried to go on a three-week holiday every year. The planning and the logistics are however, “very difficult”, Sigi admits.“I had to learn to let go as I thought he would not survive without me! I nearly had a nervous breakdown in 2005.”A friend who had a handicapped husband urged Sigi to not feel guilty going on a holiday and leaving Hein behind.“Hein encourages me to go on holiday, as long as he has his routine and can stay at home with our caregivers whom he knows and trusts.” Sigi’s shift normally starts at 17:00 until 08:00 the next day. Hobbies help her take her mind off things. She loves doing pottery and to paint. “Our women''s group and a support group at church is also a big help. I also like reading a good tear-jerker and let all my emotions out through this.” Her advice to other men and women taking care of a chronically ill person is to not only always think of the patient’s needs. “Try to find a hobby. Pottery is good therapy. Also, try to be with people who understand you, but don’t complain too much. People don’t like whiners. I have difficulty being with people who can’t seem to stop complaining about little things.”Try to find the "sunflowers ", the positive things you like doing, Sigi says, and place them in the situation you are in.“Don’t look at the situation as the end, but as the beginning of a challenge. Dance around the mountain, rather than getting rid of or climbing it. Also see the sunrise behind the mountain.”Sigi encourages caregivers to let the handicapped person be part of their lives. “Be honest and don’t ever tell them lies.”After her annual break, Sigi usually can’t wait to return to Hein. “Tears stream down our faces when we see each other again. The last time he even organised roses and instructed the caregiver to ask my neighbour to buy roses for me. He loved seeing my reaction.”Above all, her faith is the one thing she and Hein hold on to.“Put your trust in Jesus Christ, read the Bible. Psalms are a great help to uplift us.”Hein shared his MS journey in his autobiography, In Retrospect – Told with the Eyes, admitting he has been hit by “the serious kind”.Multiple sclerosis (MS) is a neurological disease, whereby the myelin layer around the nerves is attacked for an unknown reason. Scars, which prevent information to be passed from the central nerve system to the muscles, develop and total paralysis of the muscles follows. Another name for this disease is ‘the disease with a thousand faces’. “It is interesting that neither the eye nor the laugh-muscles are affected, something for which I am very grateful,” Hein writes.Without his eyes, it would have been impossible for him to write the book, admitting it has been an arduous process to dictate the letters.“Sometimes I only managed two sentences per day and other times I could write paragraphs.”His faith in God shines through every sentence, often quoting a verse from the Bible. “I shall not die, but stay alive and tell what God has done! He has punished me hard, but He did not allow that I would die.”This particular verse has given him a lot of courage, Hein says, urging him not to lose hope.“In spite of a bad handicap, my faith in God motivated me to write this book. I know and feel accepted and saved by God. Live as the Bible says and you will feel it is true. Now I experience it daily. The Bible is true. Why else all the hassle about a book in which wisdom, comfort and help, which no human being was able to give me, has been written?”What counts every day, writes Hein, is that with every bit of “bad luck comes a bit of good luck”. In his huge “bad luck of MS”, he has gotten to know Jesus much better.He admits that his “longest time on earth” is probably behind him. Still, his life had worth and all the trials and tribulations and the disease has not been in vain. “I have met Jesus during this process and with that as a certainty, I will be with Him in eternity. I had to give nothing from my part, and have won mercy and eternity. That’s what I call business!”(werrlein@iway.na; info@msnamibia.org; www.msnamibia.org)

A disease with a thousand faces

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Republikein 2025-07-01

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A disease with a thousand faces

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