kylisa
Distinguished member
- Joined
- Feb 11, 2008
- Messages
- 195
- Reason
- Lost a loved one
- Country
- US
- State
- KY
- City
- Stanford
It is really hard to describe a person on paper. Words cannot fully convey the essence of a human being. The degree of warmth, concern, fierceness, and any other quality will either be too understated or overstated in a readers mind. My mother was a paradox. She was a bundle of warmth and or coolness as situations warranted. She was genuinely friendly but, could turn into a spitfire if need be. She was competitive when playing games but did not envy others. She was a wife, mother, and friend. If you were up she was up with you. If you were down, she was too. However, if she thought you were a bit too full of yourself, she wouldn’t hesitate to bring you back down to earth. She sacrificed for others. She was not a high maintenance woman. She just was…the most important woman in our lives.
ALS robbed my mother of her health. ALS robbed us of my mother.
ALS is a MONSTER!
The monster reared its ugly head in late May of 2007. That was when we first noticed Mom dragging her left foot. My father was sure she had had a light stroke. My mother figured nothing major was wrong because there was no pain. I researched the foot issue and found that peronial nerve palsy was likely to be the problem. I wanted her to go to the doctor. She said it would resolve on its own. Finally, in June, after my father and I dogged her enough, she relented and let me take her to the doctor.
During that first visit, her blood pressure was out the roof. That, in its self, tipped me off to real problems. My mother’s blood pressure had always been on the very low side of normal. She had always been a petite woman. She had never been overweight. You could count on one hand how many times she had been to the doctor over the years, with the exception of her two pregnancies. She didn’t even take aspirin as a rule. She had a very high tolerance to pain. That day, the doctor ordered x-rays of her spine and hips, blood work, and had her walk back and forth while he observed her.
When the test results came back, he told us that her blood work was fine, the x-rays showed only arthritis normal for her age, and that he wanted to refer her to a neurologist for the dropfoot.
My mother argued that, if it was peronial nerve palsy, it would resolve on its own. The doctor flatly told her that, while that might be the case, she needed to see a neurologist just in case it was something else.
On July 23, 2007, my mother had a MRI of her head and spine.
The results were normal. The neurologist then decided to test her for autoimmune issues. Those tests came back negative. He could not diagnose her. He wanted to refer her to a neurosurgeon. She refused to go. Her reasoning was that she had peronial nerve palsy and she didn’t need to see a surgeon.
Her foot got weaker; she got an AFO for her shoe. She continued to live day in and day out waiting for her foot to get well. It didn’t, and there were other things beginning to show up and the neurologist still couldn’t give us a diagnosis. She quit seeing the neurologist in September 2007.
By early November, her voice began sounding almost monotone and hoarse. I finally talked her into going back to the neurologist. I asked him if she could be suffering from NPH. He told me that I spent too much time on the internet. I told him that I was searching for answers because he wasn’t coming up with any. That visit escalated into a sparring match. I realized that day that he was at a loss at what was going on with my mother and was frustrated as a result. I asked for a referral to UK Medical Center and he flat out refused. That was the day I decided to take matters into my own hands. I made an appointment with my own doctor with the intent to get her referred to the medical center. I also continued searching the medical books and internet. I suspected she had ALS. I hoped to God I was wrong.
My doctor talked to us. He agreed she needed to see a specialist. He referred her to one of the top neurosurgeons at the medical center. Her appointment had been scheduled for early in February 2008. By the time she saw the surgeon, she was using a cane and needed a wheelchair for long distances. On that first visit, the doctor talked to her and us. She had my mother walk, do resistance tests, and looked at the copies of the MRI’s that were done back in July 2007. I discussed my disgust with the neurologist with her and voiced my fear of ALS. The neurosurgeon did not scoff at my research. She stated that she was leaning toward the same conclusion. She told my mother that she was going to order some tests for her. Those tests were an EMG and nerve conduction test. These were performed about a week later. I was with her through the whole thing. She was stuck all over with the EMG probes. When the doctor that performed the tests was finished, I asked him if there were any sensory abnormalities. He waved me off saying that he would have to examine the results before he could give a definite opinion. He left the room and we got her dressed. We waited for someone to tell us we could leave. About 20 minutes later, the doctor came back in and told her that she definitely had something going on. She wanted to know what specifically was wrong and he told her that the final results would be back in a couple of weeks. As my father was taking her out, the doctor turned to me and said “No sensory issues.” I looked him straight in the face and asked, “So, is it ALS?” His reply was “Most likely”. With that, we both sighed. We left the room, him going back to his duties and me catching up with my family.
The neurosurgeon called and told my mother that she wanted to see her a couple of weeks later. We drove the hour drive to UK Medical Center. We met with the neurosurgeon. She told us that we did not need to see her anymore. She told us that her specialty was surgery and that Mom didn’t need any surgery. She told my mother that she was diagnosing her with ALS. She referred us to her colleague that specialized in ALS. His name was Dr Kasarkis. His assistant was a nurse named Kathy Vanderpoole. They became instrumental in getting us through the horrible journey we were already traveling.
The days following the official diagnosis were a blur. The more I researched ALS, the sadder I became. I cried, prayed, begged, and finally, I resolved to get myself and her through it. My father was wonderful. He was more attentive than he had ever been to her. The man who hated to travel offered to take her anywhere she wanted to go. She refused. As each loss of ability came, we adapted. She took it all in stride. She only cried when the frustration got too much. When she could no longer talk, she wrote on a dry erase board. When she could no longer eat, she had Ensure through her peg tube. When her right leg became affected, she took to her bed. She used a bicycle horn to summon us.
She was a real trooper through it all. Until the last few weeks, you could not have asked for a better patient. The last few weeks were hell. She was in tremendous pain. She became incontinent. She was rapidly declining. Death came on June 23, 2009. She passed peacefully. This paradox, known as my mother is no longer a prisoner of the ALS MONSTER!
ALS robbed my mother of her health. ALS robbed us of my mother.
ALS is a MONSTER!
The monster reared its ugly head in late May of 2007. That was when we first noticed Mom dragging her left foot. My father was sure she had had a light stroke. My mother figured nothing major was wrong because there was no pain. I researched the foot issue and found that peronial nerve palsy was likely to be the problem. I wanted her to go to the doctor. She said it would resolve on its own. Finally, in June, after my father and I dogged her enough, she relented and let me take her to the doctor.
During that first visit, her blood pressure was out the roof. That, in its self, tipped me off to real problems. My mother’s blood pressure had always been on the very low side of normal. She had always been a petite woman. She had never been overweight. You could count on one hand how many times she had been to the doctor over the years, with the exception of her two pregnancies. She didn’t even take aspirin as a rule. She had a very high tolerance to pain. That day, the doctor ordered x-rays of her spine and hips, blood work, and had her walk back and forth while he observed her.
When the test results came back, he told us that her blood work was fine, the x-rays showed only arthritis normal for her age, and that he wanted to refer her to a neurologist for the dropfoot.
My mother argued that, if it was peronial nerve palsy, it would resolve on its own. The doctor flatly told her that, while that might be the case, she needed to see a neurologist just in case it was something else.
On July 23, 2007, my mother had a MRI of her head and spine.
The results were normal. The neurologist then decided to test her for autoimmune issues. Those tests came back negative. He could not diagnose her. He wanted to refer her to a neurosurgeon. She refused to go. Her reasoning was that she had peronial nerve palsy and she didn’t need to see a surgeon.
Her foot got weaker; she got an AFO for her shoe. She continued to live day in and day out waiting for her foot to get well. It didn’t, and there were other things beginning to show up and the neurologist still couldn’t give us a diagnosis. She quit seeing the neurologist in September 2007.
By early November, her voice began sounding almost monotone and hoarse. I finally talked her into going back to the neurologist. I asked him if she could be suffering from NPH. He told me that I spent too much time on the internet. I told him that I was searching for answers because he wasn’t coming up with any. That visit escalated into a sparring match. I realized that day that he was at a loss at what was going on with my mother and was frustrated as a result. I asked for a referral to UK Medical Center and he flat out refused. That was the day I decided to take matters into my own hands. I made an appointment with my own doctor with the intent to get her referred to the medical center. I also continued searching the medical books and internet. I suspected she had ALS. I hoped to God I was wrong.
My doctor talked to us. He agreed she needed to see a specialist. He referred her to one of the top neurosurgeons at the medical center. Her appointment had been scheduled for early in February 2008. By the time she saw the surgeon, she was using a cane and needed a wheelchair for long distances. On that first visit, the doctor talked to her and us. She had my mother walk, do resistance tests, and looked at the copies of the MRI’s that were done back in July 2007. I discussed my disgust with the neurologist with her and voiced my fear of ALS. The neurosurgeon did not scoff at my research. She stated that she was leaning toward the same conclusion. She told my mother that she was going to order some tests for her. Those tests were an EMG and nerve conduction test. These were performed about a week later. I was with her through the whole thing. She was stuck all over with the EMG probes. When the doctor that performed the tests was finished, I asked him if there were any sensory abnormalities. He waved me off saying that he would have to examine the results before he could give a definite opinion. He left the room and we got her dressed. We waited for someone to tell us we could leave. About 20 minutes later, the doctor came back in and told her that she definitely had something going on. She wanted to know what specifically was wrong and he told her that the final results would be back in a couple of weeks. As my father was taking her out, the doctor turned to me and said “No sensory issues.” I looked him straight in the face and asked, “So, is it ALS?” His reply was “Most likely”. With that, we both sighed. We left the room, him going back to his duties and me catching up with my family.
The neurosurgeon called and told my mother that she wanted to see her a couple of weeks later. We drove the hour drive to UK Medical Center. We met with the neurosurgeon. She told us that we did not need to see her anymore. She told us that her specialty was surgery and that Mom didn’t need any surgery. She told my mother that she was diagnosing her with ALS. She referred us to her colleague that specialized in ALS. His name was Dr Kasarkis. His assistant was a nurse named Kathy Vanderpoole. They became instrumental in getting us through the horrible journey we were already traveling.
The days following the official diagnosis were a blur. The more I researched ALS, the sadder I became. I cried, prayed, begged, and finally, I resolved to get myself and her through it. My father was wonderful. He was more attentive than he had ever been to her. The man who hated to travel offered to take her anywhere she wanted to go. She refused. As each loss of ability came, we adapted. She took it all in stride. She only cried when the frustration got too much. When she could no longer talk, she wrote on a dry erase board. When she could no longer eat, she had Ensure through her peg tube. When her right leg became affected, she took to her bed. She used a bicycle horn to summon us.
She was a real trooper through it all. Until the last few weeks, you could not have asked for a better patient. The last few weeks were hell. She was in tremendous pain. She became incontinent. She was rapidly declining. Death came on June 23, 2009. She passed peacefully. This paradox, known as my mother is no longer a prisoner of the ALS MONSTER!
