HarlequinHeart
Active member
- Joined
- Jul 12, 2010
- Messages
- 42
- Reason
- Loved one DX
- Diagnosis
- 7/2010
- Country
- US
- State
- NE
- City
- Omaha
My mother has been diagnosed with ALS as of Friday, the 9th. She will be 63 this year, and all of her symptoms thus far match perfectly with the signs of ALS as far as I understand it.
Although she's been diagnosed by a specialist in our area, he is recommending her to a doctor at the Mayo Clinic as soon as possible. (Although we have yet to have a date on when she can be seen there.) We're obviously strongly hoping they are wrong, but my worst concern is that they aren't.
So far, her symptoms have commenced in this order..
First she started tripping over her own feet a lot, then the stumbling became full-on falling. I've seen her fall more times that I wish to count.. this has been over the past several months, although I can't recall when exactly she started this as we didn't think much of it at first.
Then we found out one of her legs had "foot-drop". We assumed at first that it was from a poor diet, and crossing her legs far too much over the previous year. (I'll explain why in a bit.)
Her legs now are very thin, as the muscle is barely there.. she can still walk, but just barely. She started using a cane finally last month, but when possible (such as at the store) she will use a motorized chair.
It does seem, to me, that she has occasionally stumbled over her own words, but she doesn't appear to be having a hard time speaking for the most part. This may be a sign of ALS, or possibly just her own characteristic as it happens fairly seldom, and has been on-going for some time with no signs of worsening.
The walking, however, is worsening at a rapid rate.
A huge part of me is truly hoping that this is caused by her poor diet. She almost never drinks water, and she will go sometimes longer than 24 hours before remembering to eat. (She's mostly on a diet of soda at this point, as a lot of things were going on before all this that caused her to take care of others before herself.)
Now, the rest of this will certainly appear as a pity party, and to be honest it somewhat is.. but it's also things I just need to get out. No one close enough to me seems to quite understand as I'm sure some of you will be able to.
My father passed away when I was eight years old due to problems with his heart. (I never received counseling for this, although I am planning to see a therapist regularly as of this month.) My mother remarried a year later, and he became my father now, for the most part. Although it isn't the same as having my biological father around, he's been my father for the majority of my life now.
Now, my step father had serious mental issues appear somewhat suddenly about two years, possibly a year and a half ago. He was in a mental hospital for about a year, and my mother and I were worried sick. She was at the hospital for the majority of each day, which caused her to forget about her own health. (No symptoms had appeared in her at this point.) Sitting at the hospital each day, she'd mostly just have soda, and sit with her legs crossed in the hospital chairs all day. I've heard this can cause "drop foot", so we passed off her poor posture and lack of protein and water as the issue. Now, we're not so sure, although I'm sure it all played some part in this.
She's had every test you can possibly imagine thus far, and they've ruled out everything imaginable. (The last test as of late being a spinal tap, which was inconclusive.)
I'm at my wits end. None of this is about me, it's about her.. and I know that. But a huge part of me just wants to scream "Seriously? I can't have one healthy parent in my entire life?" I'm only twenty-two years old, and I feel that this is becoming too much for me to bear. But I need to be there for her, as this is HER illness and her story.. I just need a little sympathy so I can show more strength in front of her to help her through this.
I'm sorry this is all a bit poorly worded and scattered, I'm honestly trying not to throw-up. My stomach is in such knots right now.. but I'm sure you all know how that feels.
Although she's been diagnosed by a specialist in our area, he is recommending her to a doctor at the Mayo Clinic as soon as possible. (Although we have yet to have a date on when she can be seen there.) We're obviously strongly hoping they are wrong, but my worst concern is that they aren't.
So far, her symptoms have commenced in this order..
First she started tripping over her own feet a lot, then the stumbling became full-on falling. I've seen her fall more times that I wish to count.. this has been over the past several months, although I can't recall when exactly she started this as we didn't think much of it at first.
Then we found out one of her legs had "foot-drop". We assumed at first that it was from a poor diet, and crossing her legs far too much over the previous year. (I'll explain why in a bit.)
Her legs now are very thin, as the muscle is barely there.. she can still walk, but just barely. She started using a cane finally last month, but when possible (such as at the store) she will use a motorized chair.
It does seem, to me, that she has occasionally stumbled over her own words, but she doesn't appear to be having a hard time speaking for the most part. This may be a sign of ALS, or possibly just her own characteristic as it happens fairly seldom, and has been on-going for some time with no signs of worsening.
The walking, however, is worsening at a rapid rate.
A huge part of me is truly hoping that this is caused by her poor diet. She almost never drinks water, and she will go sometimes longer than 24 hours before remembering to eat. (She's mostly on a diet of soda at this point, as a lot of things were going on before all this that caused her to take care of others before herself.)
Now, the rest of this will certainly appear as a pity party, and to be honest it somewhat is.. but it's also things I just need to get out. No one close enough to me seems to quite understand as I'm sure some of you will be able to.
My father passed away when I was eight years old due to problems with his heart. (I never received counseling for this, although I am planning to see a therapist regularly as of this month.) My mother remarried a year later, and he became my father now, for the most part. Although it isn't the same as having my biological father around, he's been my father for the majority of my life now.
Now, my step father had serious mental issues appear somewhat suddenly about two years, possibly a year and a half ago. He was in a mental hospital for about a year, and my mother and I were worried sick. She was at the hospital for the majority of each day, which caused her to forget about her own health. (No symptoms had appeared in her at this point.) Sitting at the hospital each day, she'd mostly just have soda, and sit with her legs crossed in the hospital chairs all day. I've heard this can cause "drop foot", so we passed off her poor posture and lack of protein and water as the issue. Now, we're not so sure, although I'm sure it all played some part in this.
She's had every test you can possibly imagine thus far, and they've ruled out everything imaginable. (The last test as of late being a spinal tap, which was inconclusive.)
I'm at my wits end. None of this is about me, it's about her.. and I know that. But a huge part of me just wants to scream "Seriously? I can't have one healthy parent in my entire life?" I'm only twenty-two years old, and I feel that this is becoming too much for me to bear. But I need to be there for her, as this is HER illness and her story.. I just need a little sympathy so I can show more strength in front of her to help her through this.
I'm sorry this is all a bit poorly worded and scattered, I'm honestly trying not to throw-up. My stomach is in such knots right now.. but I'm sure you all know how that feels.
