Thank you very much for your posting. In a way your story hits home. I am the caregiver of a 53 year-old husband who until two years ago stood 6'3" weighed 220 of pure muscle and is now completely paralized with ALS. It has been a hard journey for you and your love one, I have no doubt of that. Our two kids (15 and 12) have to become my helpers caring for daddy. Not an easy task but not an impossible one either.
I have known many people with MS and in contrast with ALS, the progression of MS is slower, with ALS averaging 2-3 years of life expectancy. Depending on each persone, living longer with a motor-neuro, degenerative disease could be a curse or a blessing. We chose the get a trache and ventilation to add years to my husband's life knowing despite the fact that we knew the care would become more complex. But "buying" time means a lot to the kids and to me. I do not care how much work is to take care of him, I am blessed to have him around even if he does not say mcuh. He does not communicate verbally anymore. I miss our times alone talking and being intimate too, but we are not defeated...
I hope you do not give up. Live your life in the present. Make choices that keep you safe and minimize injury. One thing I admired about my hubby is that he used his muscles until they could not longer hold the rest of his body. Last year we got a scooter after he lost movement of the legs and could still use his arms. He enjoyed it, but soon the disease took his arms and hands too. So he is now on a special wheelchair unable to move except for his eyes and a little of his mouth. ALS and MS behave similarly with MS being slower progression and many live long lives. I hope you consider using your body's ability to move until it cannot longer do it SAFELY. If a scooter adds safety and peace of mind in your life, then get one. But if you can keep that body moving, then find time to do it too.
I have a friend who was diagnosed MS when she was 28. It has been 10 years now and two kids later and she has never stopped jogging and working out lifting light weight in the gym. She believes that while her body is not suffering from an attack, she needs to use it to full capacity while she still can. She also thinks that her work out routine has probably delayed the progression and her attacks are not as often as when she was younger.
MS is still a scientific mystery and tons of money are being spent on finding a cure. ALS patients and their families are also waiting for a miracle. I am optimistic that we will see a lot of good news next year for MS sufferers and for ALS patients like my husband. I am very active on online forums where other people with ALS and spouses chat. They are always sharing some new treatment or a suggestion, I hope you can do the same. There is always something new like a new therapy, suggestion, etc. For example, I know that Vitamin D help people with your diagnosis (that includes spending time in the sun 20"-30" everyday or taking supplements. Stay away from drinks that contain Aspartame! And maybe you want to try a technique called Emotional Freedom Technique (EFT)which is being used by many patients with MS with good results.
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Thank you very much for your posting. In a way your story hits home. I am the caregiver of a 53 year-old husband who until two years ago stood 6'3" weighed 220 of pure muscle and is now completely paralized with ALS. It has been a hard journey for you and your love one, I have no doubt of that. Our two kids (15 and 12) have to become my helpers caring for daddy. Not an easy task but not an impossible one either.
I have known many people with MS and in contrast with ALS, the progression of MS is slower, with ALS averaging 2-3 years of life expectancy. Depending on each persone, living longer with a motor-neuro, degenerative disease could be a curse or a blessing. We chose the get a trache and ventilation to add years to my husband's life knowing despite the fact that we knew the care would become more complex. But "buying" time means a lot to the kids and to me. I do not care how much work is to take care of him, I am blessed to have him around even if he does not say mcuh. He does not communicate verbally anymore. I miss our times alone talking and being intimate too, but we are not defeated...
I hope you do not give up. Live your life in the present. Make choices that keep you safe and minimize injury. One thing I admired about my hubby is that he used his muscles until they could not longer hold the rest of his body. Last year we got a scooter after he lost movement of the legs and could still use his arms. He enjoyed it, but soon the disease took his arms and hands too. So he is now on a special wheelchair unable to move except for his eyes and a little of his mouth. ALS and MS behave similarly with MS being slower progression and many live long lives. I hope you consider using your body's ability to move until it cannot longer do it SAFELY. If a scooter adds safety and peace of mind in your life, then get one. But if you can keep that body moving, then find time to do it too.
I have a friend who was diagnosed MS when she was 28. It has been 10 years now and two kids later and she has never stopped jogging and working out lifting light weight in the gym. She believes that while her body is not suffering from an attack, she needs to use it to full capacity while she still can. She also thinks that her work out routine has probably delayed the progression and her attacks are not as often as when she was younger.
MS is still a scientific mystery and tons of money are being spent on finding a cure. ALS patients and their families are also waiting for a miracle. I am optimistic that we will see a lot of good news next year for MS sufferers and for ALS patients like my husband. I am very active on online forums where other people with ALS and spouses chat. They are always sharing some new treatment or a suggestion, I hope you can do the same. There is always something new like a new therapy, suggestion, etc. For example, I know that Vitamin D help people with your diagnosis (that includes spending time in the sun 20"-30" everyday or taking supplements. Stay away from drinks that contain Aspartame! And maybe you want to try a technique called Emotional Freedom Technique (EFT)which is being used by many patients with MS with good results.
I wish you well and keep the faith strong!
December 24, 2008 - 3:03amThis Comment
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