It’s Real – ALS

I have been all over the place…the doctors, the tests. I have worried about a job, disability payments and worried over our home, food, pets, kids. I have ridden this roller coaster for seven months now, all without a single doctor willing to commit to a diagnosis. None of them want to call it, or fill out the reams of paperwork needed for a disability claim. They pass us from doctor to doctor, each one ordering more tests we can’t pay for, each one passing on making a diagnosis.

I was focused on the nuts and bolts. The finances, how to pay the bills, keep the house, make sure my mate has what he needs. Than today it settled in. I am losing my soul mate of thirty-two years. What the Hell? He is losing the ability to speak. He is losing all strength in his hands, his muscles twitch in his arms, chest, legs and face constantly. He is unable to swallow liquid without choking unless it’s thickened. He needs to hold his neck in a certain position to swallow solid food. He could be here one year, or three, five or 10 years, or he could be gone in months. This is not how I saw my old age. I planned on aging with this man holding my hand. I am lost, not sure what to do next. Life is Jane and Ray, not just Jane.

ALS, the 1st, 2nd or 34th chapter!

Today I am in a whole new place. My mate of thirty-two years has ALS. My vital, active mate who goes out of his way to be there for kids, rescue animals and care for me, my home and my yard, may leave me. It is not fair. I am all over the place today. I am grieving, I do NOT want to live another twenty or thirty years without this man. I do not want to deal with my pain, my disease that has already forced me to give up a career and most of my life, without him. He is the only thing that made my pain, lack of life, bearable.

I want to control my own emotions to be there for him, to make it ok for him to be sick, to possibly leave me. I want to be there for my kids and grandkids to make it ok for them.

Then, faster than you can snap your fingers, I am angry. It’s not fair! He is one of the good guys. Why take him and not some drug dealing scum who settles arguments with a gun?

A few seconds later I am terrified. We owe money on the house. How will I pay for it. What about electricity, water, gas, a phone? I will have to come up with money for the property tax and I will be left without medical insurance. I am unable to work due to a central nervous system disease and relied on my mate’s income.

Then I go back to, “I don’t care about the income, I need to keep him with me.” He is a mere fifty-six years old. There are new discoveries and treatments that can fix this disease, but they are mired in Federal guidelines and paper work. Doctors are afraid to try things for fear that the government will shut them down. We need to take the hand cuffs off our medical researchers and move things forward before more people like me have to watch a loved one die too young. One group has proven that injecting a certain protein dissolves harmful protein from brain cells, reversing ALS symptoms, another shows that long-term, high doses of certain antibiotics reverse and stem symptoms. Yet one is not able to start trials on humans for another three years (what the hell) and the other is shunned because doctors could lose their privileges if they prescribe mass doses of antibiotics for off label use. Wrong, wrong and wrong. Treat these people now! If you are wrong, and the treatment is wrong, so be it, they are going to die young any how, but it is a step in the right direction.

 

 

 

A New Life Approaching – ALS

My last post dealt with my husband getting tagged with ALS. I was all over the place with my emotions. Grief, anger, pain, back to anger. He is a GOOD man who never caused harm and he does NOT deserve to be taken out this way. Then today, like a tidal wave, thoughts of what was to come slammed me against the rocks.

I haven’t worked outside the home since 1992! I have CMP, bulging discs and degenerative disc disease. I live with chronic pain, weakness, fatigue, numbness and mental fog. My hubby and I worked out a life that fit us. I shop, cook and take care of the kids schooling, paperwork for their medical care, their social life, our social life and more. He, works for a wage, services the car, pumps the gas, cuts the grass, fixes leaky pipes and deals with the cable company. Put aside the mechanics of life and there is more. He is the first to take my hand when I walk. He is the one who sees if I am upset, sad or in pain. He gives hugs, he makes it ok on days I can’t get out of my chair to cook. He pushes me to listen to music or watch a favorite movie to take me away from the pain. He reads me, he gets me, I get him. We can summon each other to hand out a napkin at dinner with a hand gesture lol. Drives the kids nuts that we talk without words. Thirty-two years together!

What the hell am I going to do if he leaves me?  How will I take the pain out of his leaving from his shoulders? I don’t want him feeling guilt for leaving me. Yet I am in a panic over his leaving.

He will lose his job, hence our medical insurance, income. We owe on the house. I can’t lose the house. I can live anywhere but I am raising grandkids, still in school who need the stability. I can’t cut the grass with a push mower! If a pipe breaks I know how to fix it, but I am physically unable to do so anymore. Hell, my car is twenty years old, if it dies, I can’t buy a new one without his income. I can’t take kids to band practice, they may have to give up band and I won’t be able to pay for uniforms etc.

In full flop sweat here, when I should be focusing on how to be there for my mate. I will be there for him. I guess I can panic all I want, but I will be damned if any of this will taint the time he has left. I will deal with it later. Just another rant from someone dealing with the monster that is ALS.

 

 

ALS – Arrival

What a great day. We sat in the yard, drank our morning drinks, fed the dogs, watched the birds at the feeders and enjoyed each other’s company. Fast forward a few hours and you will find my husband, home after a visit with his doctor. My mate and best friend of thirty-two years telling me the doctor said he thinks his has ALS.

Not a shock mind you, as this is what took his mother, and we sort of waited, and feared this day for the past twenty years. But a shock non the less. The signs were there. He choked when he drank or ate. His throat refused liquid or food from time to time. He went for tests, they told him he had too much stomach acid and that was eroding his throat. We took that diagnosis, clung to it and gave him a pill to help.

A month or so later a co-worker took him to the ER because he was slurring his words so bad they feared he was having a stroke. Cue the endless rounds of medical tests and doctor bills. He still works, he feels great. But he is no longer willing to eat in public because it is embarrassed when his throat won’t accept liquid and it rolls down his chin, or he chokes when trying to swallow solid food.

His upper arms twitch and tremble and he can’t sleep for more than a few hours at a time.

The vital man, who spoils me, pumps my gas, pays the bills, wakes me with a drink and tells me how smart I am daily is struggling. It is wrong. He is a good man who works any hours needed, covers for co-workers, drives the kids to appointments and practices and refuses to let me carry groceries is failing. I read a study once where most married couple only communicate, personally and face to face fifteen minutes a day. We shattered that study! We spend hours together with our animals, talking or just sitting together listening to music. We make plans, design new gardens, gifts for the kids or talk about politics. Now he struggles to speak clearly and I must make him repeat himself often. It sucks.

This is a man who backs me all the way. He is there for all my kids in any way possible. He loses sleep to drive them places, attends marching band events, takes our boy to air shows and funds them in any way that will secure their future. He has given the kids gifts of time, money and caring that they may never appreciate. But he did it.

Now, I am faced with losing this man, our whole family is faced with losing him. What will we do? Why are human trials for ALS treatments taking so long to pass the FDA? I am angry, scared, stressed, sad. I am all over the place emotionally. I find myself worrying about how to pay for the house. What will I do when I lose health insurance. Then I am mad at myself for worrying about finances when he can no longer work.

This is living with ALS. It is ugly, it is relentless, it strangles whole families. It forces you to think about living wills, DNR documents and property wills. All things you do NOT want to think about when dealing with a sick spouse. My soul mate it fifty-six years old. One neurologist sent him for more tests, he tossed us a small kernel of hope, saying he was looking for something else.I grabbed that kernel and held on to it like it was life itself. Deep down inside, I feel that is just that, hope. Waiting for the good doc to have time in his busy schedule to tell us results. God forbid he tells us ASAP or via telephone. We have to wait two weeks. Do they know what this wait does to families?

I am just writing this all down as a way to cope with it, get it out. How do you prepare for the possibility of living without your soul mate for thirty or more years?