I married a man, knowing that I would have to take care of him

I married a man, knowing that I would have to take care of him

Four years ago, Steve was now diagnosed with Hope Dezember’s husband as an ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease. It is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord, causing them to languish. Two days later, 28-year-old Steve made an offer to Hope ...

“We met 4 years before we started meeting, under rather funny circumstances, because Steve was detained for drunk driving and sent to me at the reception. I worked as a therapist for drug and alcohol dependent people. Then, of course, we have not met. But one night, four years later, I was going to meet with friends, and he also came there. It was a really awkward moment when I entered. But he was so charming, kind and sweet. And he is still so charming. He sat and listened to me while I just complained about the former for an hour.He did not condemn and did not laugh at me, as friends did.An awkward night was a great start.

The very next day he called me. On our first date, I came to the house where we now live together. There were candles, flowers, Frank Sinatra was playing, and he made me dinner. He tried very hard to care for me. Is this what all women want?

But even that night he already had health problems. He had symptoms for about two years, but doctors constantly made the wrong diagnosis. After many years of playing hockey, he has more than once broken bones and nerve damage. Therefore, when he started having pains in his wrist, the doctors said that these were echoes of old fractures. Then, when the pain passed to the elbow, where there was nerve damage, the doctors again wrote off the past. And then they began to weaken their legs - the main symptom of ALS - but the doctors again suggested something else: that it was a reaction to the metal plate in the leg. Everything was explained until he began to fall. Only then did the doctors start doing serious tests.

We met four months before he was diagnosed. I then went with him, almost exactly four years ago - on August 9, 2011. We could not even believe at first.

The next day he said to me: "You do not have to stay with me. You heard what the doctor said - it will be hard. I will be worse. If you want to leave, that's fine.". I said: "I will not go anywhere." This was the first time we started discussing marriage.

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On August 12, he asked me to go for a walk with him to our favorite place on the Chattachi River. When we got there, he said: “I know that you said that you will always be with me. If so, will you marry me? ”And I said,“ Yes. ” I did not even expect that there would be a ring, but he immediately followed him.

I never wanted to get married. But surprisingly, I had no doubts. Most of my friends and family members thought I was crazy that it was too early. But when I told them that I was sure they did not ask questions. It was for real. We could resist everything.

Two months later, in October, we got married. Our friends chipped in, and we had a honeymoon on a private island in Belize, and it was amazing.We really tried to get out of life as much as we could and as long as we could.Then Steve could still walk, although I needed to help him a little. We were both naive and still refused to believe what was happening.We did not think that the disease would progress so quickly.

The day after our wedding, he took part in a two-month clinical trial. We did not know whether he would receive the medicine or placebo. But when his condition deteriorated, we hoped that this was a cure. He began to fall more often, but did not want him to be in a wheelchair. It really was the hardest thing for us to accept.Five months after our wedding, he was constantly in a wheelchair.

Adventures newlyweds

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In those early days, we struggled with his excruciating pains, because of which he wanted to take additional doses of painkillers. I had to be tough and follow the recommendations of the doctor. We didn’t have a typical newlywed argument about various nonsense on Facebook.

But we also continued to live our lives. When he got into a wheelchair, we began the journey for a year and a half. We traveled to California and back after spending New Year's Eve in New York.We really tried to catch as much as possible.

Another valuable memory was at the Florida Music Festival in April 2013. This was our first "dance party".Then he could move more in his chair, and then I raised him to the stage and kept him in the dance. Dancing has always been our chip. If we have a bad day, we dance. Usually still in some costumes. This is a good splash of emotions. And that makes him smile.
[reclam]

But then he lost his ability to speak. When we were in Pennsylvania in April 2013, he suddenly became ill with pneumonia. We rushed home to our hospital in Georgia, where he underwent an emergency tracheotomy.Since then, he can not speak and communicates only through the device of visual communication.

From that moment on everything began to deteriorate. We stayed with him for a day or two at home, and then he was again taken to the hospital. This lasted for a month.He died twice, but he was saved.Steve slowly began to lose weight - up to 67 kilograms. He developed gastroparesis, when the stomach is not empty. He needed special food, and I struggled with insurance companies because they did not want to pay for it until its weight reached almost 40 kg, which is crazy.Finally, he began to receive "food" intravenously, and still eats this way, and since January 2014 he has also been on artificial lung ventilation.

Life with ABS

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Now this is our life: a typical day for us begins at 8 am, when I get up and do yoga. Steve wakes up at 9. We have about an hour of routine medical rituals, taking antibiotics, bathing, and all that. Then Steve works all day on the stock market.

I stopped working full time in early 2012, when he began to fall a lot and problems started with food. And I do not regret. I actually do not want to go back to this job, even if I could.Steve made me realize that I did not live the life I wanted - this is one of the small blessings that his ALS gave us,opening my eyes to who I want to be. We find many blessings in the bad. With a master's degree, I felt that I had to work in my field, and I was a very good therapist. But actually, I didn’t have a craving for work.

We were very blessed. Steve draws, I sell paintings, t-shirts and jewelry. We made a documentary called Hope for Steve.

Steve now weighs 80 kilograms and is making great progress. We still walk often. It gets harder because it hurts him.But now he is stable. We constantly have to fight infections, but this is his best condition

He's still the same Steve.

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Inside Steve is the same man. He is perceptive. And he simply allows his spirit to shine, despite the complete loss of body control.He in his way makes people smile, especially me. My 30th birthday is next week, and I just found out that he has a photo shoot with clothes, hairstyles and makeup, on our friend’s farm, with horses. He planned his entire surprise, using only his eyes - through a special communication device. I'm just a fan of Facebook, because a couple of times a week, he will definitely post something on my wall, just to make me happy. He always affectionately calls me his own way.

Every day he thanks me. Sometimes it's hard to be here and not be able to leave the house. Nurses come to us twice a week. But for the most part, only we here entertain each other.And somehow I never get tired of seeing him all the time.

And honestly, we value life more.Earlier on trips, our day began with the question: “Well, what's next? Where are we going? "And now we say:"All that we have today is a blessing, because we are here together. ”. This is a strange gift that we received. I do not know if we would have reached this level without ALS. And I do not regret. We constantly learned something, gained experience. Otherwise, I do not think we would have survived.

When Steve found out his diagnosis, the doctor told him that the average life expectancy is between two and five years, but he also said that there is hope, because scientists are conducting a lot of research. There are many clinical trials, especially after last year the attention of the whole world was drawn to ALS thanks to the Ice Bucket Challenge. We hope so.

Sometimes people ask how we still have not lost hope.

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  • I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him

    I married a man, knowing that I would have to take care of him