Tuesday, March 6, 2012

Struggling with ALS–Lou Gehrig's Disease

September 2009

Three years ago, my mom was a healthy, vibrant woman who could stop at nothing. She was always outside gardening. She always helped people. Then she hurt her back by lifting a 5-gallon paint bucket in 2009. She hurt it bad, but she never went to the doctor or chiropractor. Then a few months later my grandma’s dogs came at her full force, one on each side and knocked her flat on her hip. This caused a lot of damage to her back also. She again did not see a doctor. She started having uncontrollable leg spasms, sudden uncontrollable shaking, was unable to balance herself very well, the slightest unleveled ground would throw her off and she would fall. She fell often and hard. Her X-ray showed that she had a fracture on her neck. She started using a cane.

She finally went to a chiropractor because she thought her spine was rubbing a nerve wrong. The doctor had her do a few tests such as standing on her heals. She physically could not do that. After a few months of not getting better, the chiropractor sent her to a neurologist. The neurologist ran some tests and said, "I don't know what's wrong. Go to this specialist." So she went to another neurologist who looked at the notes from the first neurologist and said, "I don't know what's wrong. You need to get better insurance to cover the tests we need to do. We can easily run up a bill of $10,000 in an hour worth of tests" then billed her $400. My mom left the office in tears. The despair of not knowing what was wrong and not getting anywhere was overwhelming.

May 2010

January 2010 she went to another neurologist who tested her for ALS and it was confirmed, according to the nerve tests that were done. Upon hearing this, I cried for a day. I couldn't stop it. All I could think about was that I was going to lose my mom--my best friend. My sister had a hard time at work. She cried, too. It's hard to fight back tears when you're grieving. For those of you who don't know what ALS is, it's a monster of a disease that kills the neurons, which causes the muscles to die. Without muscles, it's impossible to move. The person with ALS eventually is paralyzed. Then it becomes difficult to eat so a feeding tube is used. Eventually the person afflicted dies because the lungs stop. There is no cure. The hardest part of this disease is that the mind is still alert and aware. The person literally watches the body die and watches family members try to help. Someone else has to take them to the bathroom or change their diaper. Someone else has to feed them. They can't move. Their family is stressed out to the point of depression, suicide, or abuse. Men are seven times more likely to leave their wives during sickness—when the wife needs her husband most.

May 2011

This can be a short process with as little as a couple months to live, or a long process with over 10 years. My mom's is in between. She was diagnosed around January of 2010, but started having the symptoms about a year prior. She started using a cane, then had to use a walker. Her balance was just too bad. Then she went to a natural doctor who said she should be fine in about a year if she sticks with his program. He said he had patients before who had full-blown MS and he was able to cure them.  In April 2011 she was diagnosed with mercury and lead poisoning due to her teeth fillings and root canals. She was also diagnosed with arsenic poisoning from her well water. They bought a filter for their sink that is supposed to remove 99% of the arsenic. The “safe” number range for arsenic in drinking water is something like 7. Hers was in the 20’s. Several miles down the road where a reservoir is, the water was tested in the 400’s. Anyway, she had her fillings taken out and was expected to be healed soon. The doctor had also found fungus infections and parasites in her blood.

July 2011 my dad was to the point that he desperately needed help. Taking care of someone 24/7 is difficult. I take care of four kids, so I know what it’s like. But it’s different when it’s an adult and it’s your wife. I came to the rescue and stayed with them over the weekend while my dad went camping by himself. When he came back, he was in a much better mood, but only one weekend was not enough. I started coming over about every other day to help out. I cleaned for them, I gave mom her pills when she needed them, I cooked, and I helped them go through some things to get rid of. My dad was so appreciative. He kept saying, “don’t leave! Move in with us!” I came home to dirty dishes still needing washed, loads and loads of laundry that needed done, and I was exhausted. And my gas tank was empty and I didn’t have money to fill it. I had to stop going over there for a while. But while I was over there, I had a vision of a quilt that said the words, “With God, all things are possible.”  I am not a quilter. I’ve never made a quilt before, but when I saw this, I knew I needed to make it for mom. I felt like it was God’s promise that she would be healed and the quilt was a reminder of it. So I started diligently on this quilt, pulling bible verses that I knew would impact mom. When I was finished with it, I took it to church to have everyone pray over it. I gave it to her for her birthday.
October 2011 

She has since then gone to so many doctors, I have lost count and is now going to a specialist who believes she has Lyme Disease. He found a scar on her lower back that looked like it may have been a tick bite. She did go to the mountains prior to the beginning of this illness, so it is possible. The Lyme Disease has been attacking her nerves, which, probably along with all the other toxins, caused ALS. I encourage everyone to look up Lyme Disease, the symptoms, and testimonies from others on youtube. Lyme Disease mimics the same symptoms as ALS and MS.

August 2011

As of September 2011 she could not walk without a walker, but it would take 20 minutes just to walk from the living room to the bathroom—15 feet away. She would use the wheel chair if going places because it was just easier that way. She could not get up on her own unless the chair was high enough, she couldn’t dress herself, but she could do other things like put on her makeup and write. Her hands are getting weaker, though. She has lost so much weight, she doesn’t even look like the same person anymore. She’s had to have her hair cut because it kept getting in the way when she would eat and she couldn’t put it back. My dad doesn’t know how to fix hair, so you know how that goes. She has uncontrollable crying. Normally when a person is really sad, it’s pretty easy to hold back the tears and control ourselves. But if she gets sad, she lets it out full force but has no control.

November 2011

It is now March 2012 and my mom’s hands look like skeletons. She can no longer walk at all. She is in a wheel chair. My mom is a strong woman. She likes to get things done, fix up the house, have a flower garden. This disease has prevented her from doing what she loves. It has also taken a toll on my dad. It breaks my heart to see my parents going through this. I go to their house once in a while to help clean and just to be there for them, which helps tremendously, but it’s still not enough. And I have my own house and kids to take care of, so it really spreads me thin. But no matter what, my mom will never be a burden to me. Taking care of her is giving back what she has given me for so many years. I’ve always believed that children should take care of their parents when need be, instead of putting them in a nursing home to die. Parents give so much to their children and the least we can do to give back to them is to help them any way that we can.

December 2011
The bible says:
“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” Matthew 7:7

“Daughter, your faith has made you well. Go in peace, and be healed of your affliction.” Mark 5:33-34

“But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.”
Isaiah 53:5

“O Lord my God, I cried out to You,
And You healed me.” Psalm 30:2

“And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. “ James 5:15
So I expect God to heal my mom. This last Sunday at church, we all prayed for her to be healed. I was ready for a miracle. But it didn’t happen. I was crushed. I felt like God has forsaken us. He says to trust Him, yet when we do, nothing happens. I have heard many times that faith in God is compared to trusting that the light will turn on when we hit the switch. Well, when we hit the switch, we know it will turn on because it has done it before. The times that it does not turn on is when the light  bulb is burned out, there’s a bad connection, or no electricity. So if we hit the switch of healing and nothing happens time and time again, then we begin to trust that nothing will happen when we hit the switch. Eventually, we turn away and find another light. When a man promises to do something, then he does not, then he is deemed unreliable and people lose trust in him. Why is it supposed to be any different with God? If anything, God should be the most reliable being, never failing us, never making us doubt Him. A lot more people would trust Him if he actually healed them when they asked.

So I’ve come to terms that my mom is going to die probably within a year unless God decides to heal her like He’s promised. I’ve done a lot of crying and a lot of soul-searching. There’s things I’ve said to her that I wish I hadn’t. Annoyances are better left unsaid. If someone annoys you, get over it. It’s not their job to make sure you are not annoyed. Part of me wonders if there’s something I have done to cause her illness. Part of me wonders if there’s something someone else has done. It breaks my heart that she might not even get to see her grandchildren grow up. I know she has a lot of things she would love to do. Unfinished projects that sit in the closet where she left them before she got sick. Plants that have died from neglect. I asked her one day, “When God heals you, what’s the first thing you are going to do?” She said simply, “Run.” Something so little that we take for granted every day. How many of us can run but don’t because we are too lazy or don’t have time?

I’m so glad I named my daughter after my mom. At least there’s one thing I don’t regret. I have written my mom and dad notes that tell them how much I love and appreciate them. They are wonderful parents and they shouldn’t have anything to regret. They did a good job raising me and my sisters. They weren’t perfect, but no parent is. I feel like I owe them so much, and I do. It would take a lifetime repaying them. So I’m going to start with what I can do to help. Last night as I was falling asleep, I was thinking about what I would want if I was in my mom’s situation. Other than love and affection, I would want a chance to get the unfinished projects done. I know she has a blanket for my son that she was going to start, so I thought about helping her with that. We can do it together. I just want to give her the best year of the rest of her life. She deserves it. She doesn’t deserve this illness. She’s the sweetest woman I know—she wouldn’t purposely hurt anyone. She loves God and she has been faithful to Him. I’m still trying to figure out why God hasn’t healed her yet. All things are done for His glory, but I see no glory in this horrendous disease, or anything that has come from it.

I have created a separate blog, just for my journey with my mom's struggle with ALS here.