When Your Partner Has ALS (How Do You Live With Him)

When you learn that your partner has been diagnosed with Amyotrophic Lateral Sclerosis, most women attest that it felt as if there was a third-party involvement. Chronic diseases completely change a couple’s dynamic. Both partners need to restructure their lives around the disease that is going to undoubtedly modify the way they run the house, make love, their work habits, how they spend their free time, and how they communicate.

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ALS is a chronic, progressive, debilitating, terrible stranger that you would want to get rid of in a snap. ALS primarily affects the neurons in the brain and the nerve cells in the spinal cord. The neurons eventually die, causing one to lose his ability to maintain muscular function. Therefore, individuals with ALS present with difficulty moving, eating, breathing, and communicating. The end stage of this disease is total paralysis.


Points To Remember When Your Partner Has ALS

Are you living with someone who has ALS? Do you find it daunting just thinking about the progress of the disease and what may happen in the near future? Are you afraid that you might not be able to handle him and the relationship? Yes, ALS is a test for everyone concerned – your partner, family, close friends, and significant others.


Here’s a list of some essential facts that you need to know so you will be able to understand your partner better, and will hopefully be able to deal with his disease the best way you can.


  1. He Didn’t Choose To Have The Disease. Yes, having ALS is never your partner’s fault. He didn’t do something nasty in the past or take anything illegal that caused him to suffer from the illness. Its risk factors are unknown, thus making anybody vulnerable to acquiring it. About 10% of those who have ALS were due to genetic reasons, but the rest of the 90% remains unclear. Respiratory failure is the usual cause of death for most patients, which is roughly three to five years after being diagnosed. However, some get to live for more than 15 years. “It’s not our fault that we’re sick. It’s not our fault that we’re in pain—emotionally or physically. It can happen to anyone. It’s one of the risks of being alive,” writes Toni Bernhard J.D.
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  1. They Suffer From Mood Swings And Display Erratic Emotions. This manifestation is typical of people with upper neuron diseases. Don’t panic when your partner starts laughing one minute and then cries loudly the next. If he had just been diagnosed, perhaps it’s time to accompany him to the psychiatrist so he can be given the right medications for depression. “you cannot control your partner’s mood. You can influence it, meaning with a strategic response you can increase the likelihood that it will improve, but that won’t happen if your strategy is simply to indulge your own emotional reaction,” writes Alex Lickerman M.D.


  1. ALS Is Not The End Of The World. Outcomes of further studies on how to cure and get rid of ALS have been devastating, but nevertheless, it doesn’t mean that you’re going to lose him like a person shot in the head. With much hope, strength, and the perseverance to comply with one’s treatments, perhaps your partner will live to see his grandchildren! Stephen Hawking is a great inspiration for ALS patients. He was diagnosed at 21 but lived to celebrate his 70th Like him, your partner, with your help and support, can modify his way of life and live to share his ordeal and how he has survived it – so that others may be inspired too.
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  1. ALS Does Not Cause Mental Deterioration. It’s nothing like Alzheimer’s or dementia where the concerned individual loses his ability to remember people, events, or experiences. In time, they may not be able to walk without assistance or do your usual activities together, but he remains mentally alert. Most of them are smarter than usual, perhaps because their brain struggles to work more to compensate for their physical disabilities.


  1. Sexual Function Is Intact. The nerves responsible for arousal and ejaculation remain unaffected and so your partner can indeed perform sexual intercourse, although sometimes with difficulty. But if you love each other, you will always find ways.
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Bottom Line

For people with Amyotrophic Lateral Sclerosis, normal may be difficult to fathom, but indeed there have been testimonies of those who have enjoyed their lives with their families, living as normally as they could. You can have this kind of life with your partner. Be strong with him. Enjoy. Travel. It can be done – with hard work, love, and a lot of positivity.

“People who are ill need friends and family who can tolerate hearing about all kinds of feelings,” writes Tamara McClintock Greenberg Psy.D.

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