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New member
Jan 29, 2013
Loved one DX
A warm welcome to everyone out there, I want to share my story with you.

I lost my Dad recently back in the end of August 2012. He was diagnosed some time around 2008. He didn't tell us, I am his 22 year old daughter and he has a son my brother who is 25, he also has two little boys from a new marriage. My parents separated a long time ago when I was 5. He only got married back in 2007, he was then diagnosed a year later. I didn't particularly get along with his new wife and we had our share of problems, because of this I moved back with my mother who I lived with for quite a while previously anyway.

My father didn't tell any of us he was diagnosed with ALS. We were concerned, when me and my brother went to visit him the first time back in 2008 we noticed that his wife was measuring his blood pressure with a machine, I didn't really like this. He wasn't limping then, he was actually fine, but obviously...something wasn't. Apparently he was stressed, he was overworked with his job from travelling back and forth to work which was over an hour, he wasn't getting as much sleep or exercise as he used to and his body became terribly weaker, he appeared tired and dazed; not the same fun loving Dad we always knew. Apparently, from then we knew he was TAKING STATINS DRUGS. Did he need it? What he needed was a healthy life style change that's all. Proper balanced diet and exercise, less stress, more sleep in the night, more time for himself and less on his job including the extensive travel time.

My father was a healthy man, he had been quite active most his life, he was a fantastic competitive footballer who enjoyed the team spirit and thrill of the game. His diet was fairly ordinary, however he loved drinking Coca-Cola ALL HIS LIFE and he wasn't too fond of fruit and vegetables, unfortunately I didn't see him eat too much of it. He loved meat, rice, fish. Veg was incorporated in this, but he certainly wasn't getting as much as he should have been. He took his VITAMINS EVERY DAY. He used to scold us about it when we were children until young adults and warn us about harmful chemicals.

Ironically, my father graduated with a Masters and then went on to a PHD in Chemistry, he enjoyed it and always had a knack for it. He went on to work in a factory in Norway. He worked with CHEMICAL FERTILIZERS for years and years, coming up with some sort of new chemical compounds for plants. He was so good at his job, he saved the very unit in his factory from closing down. He traveled extensively for meetings and conferences around the world, he was extremely good at what he did and he was happy. Then, my father moved to Qatar (middle east) on a job contract. That is where he later on met his new wife. I went to live with him for a while and life was good, it was so lovely being with my Dad again. The weird thing about it is...my mother remembers an elderly man who also was diagnosed with ALS in Norway, he worked at the same factory as my father and lived in the same row of houses in our neighborhood. He worked with the same chemicals everyday. My family and I think that other than the Statin cholesterol lowering drugs and some apparent defect in the person's DNA, that there must be some connection between chemical fertilizers and ALS. Of course, these are probably just 'heavy toxins' as well which also apparently contribute to all the factors which start ALS.

We were all concerned about my Dad, he attended my brother's graduation three years before and was limping all the way with a walking stick. He was weak, he looked exhausted, something wasn't right. He was only 50 years old then, still as handsome and as attractive as he always was, but of course we were all very concerned. He lied to us, he told us he had a football accident and caused some kind of painful strain on his leg muscle. Interestingly, apparently that is how he found out he had ALS. One evening he was playing football with a local team and he suddenly fell down and lost his balance inexplicably. He was baffled, he went to a doctor just to check out what could be the problem. Hardly he expected the doctor's answer...ALS...of course my father read this up and was terribly shocked. He tried EVERYTHING, he traveled to Germany to get some tests done, to properly diagnose him, if there was anything the experts there could do...but nothing. The doctor told him bluntly something like, 'there is no cure, you will die in a period between 3 to 5 years, only 90% make it ten years,'' something like that. My father was upset and taken aback at the way the doctor had just said it out to him, isn't there anything? He must have thought. Any hope at all?! I can't imagine what he must have been feeling... just left to die slowly like this in such an awfully cruel way.

He knew he had ALS, he didn't tell us...there were some hints but we never EVER could have guessed it was the same disease as Stephen Hawking, a degenerative, paralyzing, disease. He kept his distance and didn't tell us a word, we didn't hear from him. He had moved back to Norway with much great difficulty, in a wheel chair. He was there with his mother, his wife, his sister and her husband who lived close by and his two small children who are only 3 and 5 years old. One day I spoke to him on the phone after we had an alarming phone call from my cousin about Dad's worrying condition and that we should visit him. I spoke to my Dad on the phone and was shocked to hear his voice. He was slurring his speech, couldn't get the words articulated out right, didn't talk much, it seemed difficult for him. He insisted he was just tired, that he had just woken up but I knew this was not the case. Later on, my brother and my mother spoke to him on the phone. My mother broke down in tears and collapsed, he said he was "ill" and, "it's gone to my brain now," in a casual tone. I guess he was trying to cover up all the pain and sorrow. My brother searched through the internet looking at this ALS, what was it exactly? Was there hope? A cure? There must have been. He spent the whole day or the whole week crying in his bedroom when he read the facts.

By then, my brother flew out to seem him immediately. When he arrived my Dad couldn't stand he was immobile sitting in his chair all day, that's all he could do. His arms were weak and couldn't move them easily with flexibility or strength. He couldn't stand on his own but my brother helped him, my father told him to go home that there was no use. My brother assured him that he wasn't going anywhere. I later visited my father and of course from what I had seen of him, comparing him with a few years back to that moment was like night and day. The life has seemed to have been sucked out of him, he was aching, paining everywhere, complaining of constant discomfort 24-7.

He couldn't even sleep in the night without waking up, wanting to be moved every ten to fifteen minutes. Me and my brother used to take rounds to take care of him in the night, we also stayed with him in the day. His wife seemed to be in another world, she didn't physically help out as much as we expected with the daily massages and the constant lifting of his legs and moving them, neither did she do the nights. My brother would get into this deadly routine of staying up from 12 in the night to 8 in the morning to take care of my Dad and that was a full on job, little sleep did he get, little rest my brother got. My brother was sleeping all day, awake in the dark of night helping out my dad. A lot of tension ensued in the house surrounding his wife and even my father, I couldn't live with her, I visited often but I could not have lived there with her. When I was there however, I helped out my Dad the best I could. He admired my gentle hand in the way I moved him in bed, he always said I was the best, 'turner.' :sad:

We had our laughs as much as I could keep him humored, keeping the atmosphere light, trying to conserve the physical contact as much as I could in the time we had left together as father and daughter. That precious bond we shared, the joy of each other's company I tried to hold onto as long as I could without ALS getting in the way of us. Holding his hand in the day and stroking his hair at night. Sometimes at night I would just break down in tears in the dark silently while I was stretching out my Dad's legs or just holding him up in bed while he would lean his head on my shoulder. The inner pain was excruciating, to see your own father this way, weak and helpless, its enough to make anyone extremely depressed and downhearted. He also cried too, he was so very brave and I can't believe how really brave he was. I was depressed for a long time and the whole family was too, it put a huge strain on everyone.

In the end he became terribly weak, he could not move his arms anymore. His body and weight went down to nothing. If he wanted to scratch his face, he couldn't even do it himself we had to lift up his hand to his face or we did it ourselves. He was totally dependent on everyone else, this disease is extremely cruel. My mother recently read on an ALS thread, a wife's story of an intelligent sweet husband's passing. He was a medical doctor, back in his student years he came across ALS, terming it, 'THE BEAST.' And truly, I don't think I can give it a more appropriate name than that. It strips away your ability to move, to talk, to eat, you are bound to a bed or to a chair unable to move and through all of this your brain and understanding is not affected. My father saw himself slip away, he saw himself waist away. As he was slowly deteriorating, so were we as a family, I was dying inside with him.

Me and my mother had earlier on visited a private doctor who specialized in motor neuron disease, he didn't say anything different to what we already knew. We asked him the million dollar question, ''what causes ALS?" He didn't have a certain answer, he said there is research being done which the results will only be made known in a few years time but any where up to ten years! Some kind of genetic defect combined with some toxin is supposed to trigger ALS. That is his theory and belief. He told us my Dad had three years to live generally...and he was right. The doctor later on talked about the different types of additives and preservatives in food. He gave us the impression that it is dangerous and deceiving. He said its alarming, he talked about air pollution, toxins everywhere, chemicals but he didn't have any direct answer to ALS.

We as a family have always been pretty healthy, but from this experience I can not stress more for the greater awareness of obtaining a better diet and a more active life style. To buy organic, pesticide free grown veggies and fruit. Of course, you can't buy everything completely pesticide free today but for the main ingredients which make up most of your everyday meal...buy organic produce. I can't stress enough the dangers of highly stressed lives, take a moment for yourself everyday to relax. Surround yourself with friends and family, laughing and socializing. This raises 'dopamine' levels in the brain which is said to help against the disease as Alzheimer's, especially as you grow older. Adopt a more active life style, take a walk everyday or every other day. Try to do physical activity in a location which does not have so much pollution like a city where there are many vehicles' exhaust. EAT YOUR FRUITS AND VEG! At least ONE raw serving of it everyday, not forgetting your essential oils and fats. Drink plenty and plenty of water, give your body some breaks, do some fasting, juice fasting, water fasting or just ordinary fasting for a day, or even a few days a month.

My father forgot these things and started taking Statins, he believed in what his doctor told him that it would decease his cholesterol levels making him a 'healthier' person. Statins works for some, but for the others...it seriously damages their health. Their body does not agree with it. Do the research yourself into Statins drugs and you will see that it debilitates, weakens and exhausts the patient causing muscle atrophy which is one of the first starting symptom of ALS.

The Pharmaceutical trade is a million billion dollar industry. You think these experts have your interests, they only want to make money. Our food is our medicine, our body is the doctor, you feed it right, you treat it right, it will heal itself. You CANNOT cure high cholesterol with STATINS, take a good look at your life style. What is stressing you? Look at the food you are eating, is it high in unhealthy oils and fat? Does it contain the typical mono-sodium glutamate 'MSG' flavor enhancers and high fructose corn syrup? Always read the labels! Take a major lifestyle change instead of taking those pills. With all this advice and what I have learned through this whole ordeal, you can't guarantee a long healthy life with these rules, but you CAN TRY and live a healthy life in pursuit of being healthy. You owe it to yourself and to the people you love.

Take a look into some alternative and therapeutic medicine such as the 'Gerson Therapy.' Copied from Wikipedia about the German physician:

"Max Gerson was a German physician who developed the Gerson Therapy, an alternative dietary therapy, which he claimed could cure cancer and most chronic, degenerative diseases."

There are many informative documentaries out there like, 'Dying to Have Known," about holistic cancer and degenerative disease treatment that has been round for a century including Gerson Therapy, and 'Food Matters', about how we can eat better for better health. These documentaries and truly inspiring, they can be found on Netflix for example. Whether there is any legitimate truth to it I do not know but I know that I would rather take the path of alternative medicine than the 'medicine' which is being fed to us by our doctors and pharmacies. Who knows if vaccinations these days are safe? Who knows anything anymore? A lot of Pharmacy major graduates have left the industry because of the shams and shames of what they are finding.

Lastly, I know that a range of combining things caused my father to get ALS. It was stress, it wasn't the best of diets, Statins prescription drugs, and a common lack of exercise. He wasn't overweight. I recently read an article in a medical magazine about exercise. The doctor quoted something like, 'the human body was not designed to sit in chairs and stay dormant, the human body needs gravity for bones and muscles quite often. We are active creatures.' It further stated that if you are sitting in an office chair all day, take some two minutes out of twenty minutes to take a little walk whether it's to go for a bathroom break or to get some water from the water cooler. Anything helps, it has been proven that people who are more active this way actually LIVE LONGER, than those who are immobile and less active. These people die earlier on.

Who knows, the people who are diagnosed with ALS are perhaps the most healthiest of human beings compared to a lot of people out there. My father was not an 'unhealthy person,' and I am sure a lot of ALS patients are healthy people with healthy life styles. This is what I can conclude...until some famous person gets ALS, THEN there will be more attention and research being payed into this. Not enough is being done, the research and testing process is too slow and not enough healthy awareness is being spread to warn people about the dangers of diseases. In a more industrialized world we are living in today with more pollution, we are far more removed from nature than we were in the olden days we do not know the amount of toxins that enter our bodies everyday. Whether entered through respiratory through our lungs or orally with what we eat, we need to take care of ourselves because this terrible cruel disease can affect anyone. It's pretty scary and disturbing, nothing is being done, it's never talked about. I guess what is more important to the media is Lady Gaga's new song or sickening hyped music video...

For those of you out there who have ALS...for any family member who is suffering out there I wish you prayers of hope. As for my Dad who died from an infection in the lungs and a lack of nutrition in the end, he died peacefully and he was talking casually and smiling that day in the hospital bed...this is not good bye. After my time is up in this life I hope I can be with him again. I couldn't have asked for a better father, he was well liked by everybody, extremely kind and giving, charitable, intelligent and loving to the extreme.

I love you Dad, you never really left because you're always in my heart.

Thank you for reading this and I hope the best to you out there...

If you ever need to talk, ask any further questions or get info
or just someone to confide in;
I am here and I understand.
I'm so sorry for your loss. Hugs to you!
I am very sorry for your loss, peace be with you. My belief is that you will see your Dad again one day.
I am very sorry about your father. I am also going through the same condition. My father is suffering from ALS. He was diagnosed with ALS in 2008. I am staying up with my dad at night and help him to feed. Its really a very cruel disease.
Thank you very much...hugs back to you too.
Yes, I am sure I will. What are your stories? Aren't these diseases just utterly terrible...
Oh...I am terribly sorry ;( it's the worst news. There is no word to describe how hard it is, it drains the life out of you emotionally and also physically because you have to take care of this person's every living need. I hope you have someone helping you too, it would be close to impossible to do it alone. You need the support of family/friends, especially you Dad as well. There is nothing really I can advise you with, only that it has made me closer to God in an ironic way. I don't know whether you believe in God but I believe things happen for a reason...cruelly but what's keeping me hopeful in some way is that I hope to be reunited with him again. After my father died, a day after that night my brother had the most realest of dreams. My father was lying in bed normally surrounded by his mother and his wife, then he went to stand up. My brother said he looked so rejuvenated and healthy, his muscles were back, his body weight, his hair was even jet black as it once when he was younger. He was apparently glowing in a white gown of some sort. He didn't have much of an expression apparently, my brother tried to further describe his face. He said he was looking out the window at something but my brother couldn't look to see as if he wasn't allowed to. His expression was as if he was not bearing the weight of any responsibilities anymore, as a father, in his job, in his life, as if he was completely removed from all that. He was okay, but it may have seemed to him as well that he was concerned about what was going to happen to all of the family after this. My brother woke up with a tear drenched pillow obviously, he said it was just so sweet to see him again looking well but we both see him often in our dreams. A few times after he died I dreamed I was just normally sitting with him and he told me he missed me or I told him I loved him, I really do believe that they are there and they never really go away. The soul is still alive. When he died in hospital my brother said, it's not that body that's Dad...it's...well I hope wherever he is now he is happy. My brother isn't spiritual or religious, he doesn't really believe in God but that statement was very telling I think. As his soul had just passed and gone some where and it was only the body left, the body isn't the person, it's the soul inside. I don't know what stage of ALS you Dad is in, but to us it went quite quick in the end. He started to refuse to eat, he couldn't really eat anymore so he was losing even more weight. He had tons of saliva being coughed out daily and in the night, it just came from no where. Obviously, this gave him an infection in the end. He was supposed to then get this tube inserted but he didn't want it and I knew he didn't. It was the end of the road for him, he was exhausted and just as much painful as it is...as much as you want your Dad there of course and you hold on to every moment, you are torn as well because you know it would be better if he left this earth he wouldn't have to suffer anymore. In these moments, I don't think life could get any realer or harder...you go though a lot and you are changed forever when something like this happens. You Dad will not be here one day, and that day is probably sooner than you think. Give him the hugs, the kisses, the affection you can give him now because my Dad only died a few months ago, I wish I could give him a hug right now and tell him I love him. You are basically just preparing really for that day to come...ALS is the most horrible thing. I wish you the best of luck with your future and your Dad must be so proud of you, people deserve awards of care with people who have ALS!
So sorry you lost your dad. Sending warm thoughts your way. Yasmin.
So sorry about the loss of your Dad. ALS sucks, that is for sure.
sorry about your dad....interesting story until the lecture on how to live ones life ....good luck, johnny
Statins have been suspected in Alzheimer's but not in ALS. There is no causative chemical or drug that has been proven. It is a very complex disease and if it could be blamed on one or two things, that would have been known already. I lost my wife of 39 yrs. to this monster disease last year and the more I read about ALS the more I was in the dark. Just like chasing the wind! I also am no uneducated man. Have a bachelors in chemistry and a Doctorate in pharmacy.
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