Let’s start with the ugly.
For those who may not know, I was diagnosed with als (aka. Lou Gehrig’s Disease) in June 2008. Previous to that I was a healthy and physically active individual.
Amyotrophic lateral sclerosis (ALS is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. The motor neurons control voluntary muscles like the diaphragm, chewing, swallowing, speaking, arm and leg movement etc. Associated with the loss functioning motor neurons in ALS, is that various muscles cells waste away (atrophy), resulting in increased muscle weakness and eventual paralysis.
Upper body: Very weak. I have not washed my own hair in over a year. I now have 12 inch dreadlocks which aren’t so bad. Just kidding (only about the dreadlocks part). There are friends that come over and wash it in the kitchen sink for me. I cannot change my shirt or put on a coat by myself. I have not been able to drive a car since early January 2011.
Hands: Fingers are starting to curl. I try to straighten them out as much as possible on my own. At one point I had some custom braces made which I planned on wearing at night. They were uncomfortable and I felt like my hands were flippers. While wearing them it was impossible to brush hair out of my face or pull up my covers.
Breathing: My respiratory function is at 94. This is great and better than some ‘healthy’ people. But a nasty cold virus did result in me not being able to breath and I did have an ER visit.
Eating: I can feed myself and chew and swallow. The difficulty lies in lifting the food to my mouth; it is an awkward and tiring process. For that reason Dr. Bromberg wants me to get a food tube. He refers to it as a ‘tool.’ I could still continue to eat normally but if I was too tired to eat I could pour in a can of calories and nutrients to sustain me. Appetizing! Not really!! I’m not ready for that yet. But I would like to gain weight.
Speaking: Due to atrophy in my tongue my speech is slow, some words are difficult to enunciate and my voice is starting to sound different.
Lower body: I can walk, but in the house I use a walker for stability. In the neighborhood you will see me pushing around that stupid stroller. There has been enough tripping and falling that it is much safer this way. We went on a few longer outings this summer as a family where I knew that if I was going to be involved I would need to be in a wheelchair. So I rode.
Consider this as just an update. I'm not looking for pity, or the sad smiles, or multi-level-marketing berry juices.
No thanks.
What I do look for is how a person handles the bad, ugly, or the challenging circumstances in their own life. Everyone has something. Everyone. I look around and am inspired by the strength, drive, ability to adapt, faith and peace of others.
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For those who may not know, I was diagnosed with als (aka. Lou Gehrig’s Disease) in June 2008. Previous to that I was a healthy and physically active individual.
Amyotrophic lateral sclerosis (ALS is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. The motor neurons control voluntary muscles like the diaphragm, chewing, swallowing, speaking, arm and leg movement etc. Associated with the loss functioning motor neurons in ALS, is that various muscles cells waste away (atrophy), resulting in increased muscle weakness and eventual paralysis.
Upper body: Very weak. I have not washed my own hair in over a year. I now have 12 inch dreadlocks which aren’t so bad. Just kidding (only about the dreadlocks part). There are friends that come over and wash it in the kitchen sink for me. I cannot change my shirt or put on a coat by myself. I have not been able to drive a car since early January 2011.
Hands: Fingers are starting to curl. I try to straighten them out as much as possible on my own. At one point I had some custom braces made which I planned on wearing at night. They were uncomfortable and I felt like my hands were flippers. While wearing them it was impossible to brush hair out of my face or pull up my covers.
Breathing: My respiratory function is at 94. This is great and better than some ‘healthy’ people. But a nasty cold virus did result in me not being able to breath and I did have an ER visit.
Eating: I can feed myself and chew and swallow. The difficulty lies in lifting the food to my mouth; it is an awkward and tiring process. For that reason Dr. Bromberg wants me to get a food tube. He refers to it as a ‘tool.’ I could still continue to eat normally but if I was too tired to eat I could pour in a can of calories and nutrients to sustain me. Appetizing! Not really!! I’m not ready for that yet. But I would like to gain weight.
Speaking: Due to atrophy in my tongue my speech is slow, some words are difficult to enunciate and my voice is starting to sound different.
Lower body: I can walk, but in the house I use a walker for stability. In the neighborhood you will see me pushing around that stupid stroller. There has been enough tripping and falling that it is much safer this way. We went on a few longer outings this summer as a family where I knew that if I was going to be involved I would need to be in a wheelchair. So I rode.
Consider this as just an update. I'm not looking for pity, or the sad smiles, or multi-level-marketing berry juices.
No thanks.
What I do look for is how a person handles the bad, ugly, or the challenging circumstances in their own life. Everyone has something. Everyone. I look around and am inspired by the strength, drive, ability to adapt, faith and peace of others.
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The good. @ the park (dreadlocks free) with Claire-bear.There is so much that is good and beautiful mixed in with the bad. It is a package deal.
My goal is to try to pause and and be present in the moment. There is the potential for a million little moments that make each day worth it.
Now that I have said it, the trick is to live it ;-)
