Erika
Distinguished member
- Joined
- Sep 21, 2016
- Messages
- 175
- Reason
- CALS
- Diagnosis
- 06/2016
- Country
- US
- State
- Arizona
- City
- Mesa
Hello,
..... I'm not sure where to begin. I've never written or have been part of a support group, but I know I need advice and maybe vent a little. My name is Erika and my mom was diagnosed with ALS last June. Her symptoms began with her foot dropping about 2 1/2 years. Her symptoms "stayed" on her right leg for almost two years. It wasn't until last January the it went to her right hand and the her arm. I kept hoping it was just a pinched verve, or even a stroke we were unaware of. I kept telling her (and my self) that with some effort and therapy she'd be back to normal in no time, but by early march and after many tests and a really bad neurologist, I was sure it was bad. Her speech had changed. Two neurologists and more test later in june, she was using a walker and a wheelchair for far walks. Her memory seemed off too. My siblings already knew and a sister flew down to be with us the day it became official. I'll never forget their face. Pure devastation. Devastation and fear. We cried and hugged, but my sister and I remained strong for them and told them we'd be there for them. And we have, in our own ways. I'm the only one of 4 sibling living close by. My dad and her live on their own (for now) so he is the primary care taker, but I've taken them to every appointment, medical test, therapy. My sister is able to fly down every now and then for a few months at a time. It still overwhelming. My other two siblings aren't able to be here as often or as long due to work and illness for one of them. We've stuck together and are making the best out of it. We want to take care of her, take trips, make memories and take advantage of the time we still have. Still, I can't help getting upset. We're trying so hard to help her be comfortable and make the best out of this situation but nothing seems to work. She isn't at a stage where she has accepted this yet I think. She has breathing difficulties and is on her wheelchair mostly now. Yet, she won't do her breathing therapy because she doesn't like the way it feels or use her bipap at night because she can't sleep, eventhough her insomnia has her awake most night anyway. She has a harder time eating now too but eats poorly even if she is hungry. Has she given up? Is this a phase? How do we help her out of it??? My dad is tired, and has some hear issues. He was given a mood stabilizer for anxiety. He is not much of a talker either so although we talk, he doesn't say much. He worries me, but my mom refuses to move in with me and my family and my dad want to do what will make her happy. She doesn't want to be a burden even though we've told her over and over she won't be. I want to take care of her and it would actually make it a little easier since we live about half an hour away from each other. We're considering helping them move back to Mexico. Friends,two of my siblings live there and 95% of our family who live close by or at least in the same state. Her doctor said it would be a good idea if we did, since family and the emotional support is something that'll really lift her spirits. It also makes more sense financially, but my sister can't travel for too long due to her illness. So that would mean she'd probably. never see her again. If she stays, my sister and family would move here at least temporarily and all my siblings would get a chance to say goodbye. But....I don't know. I'm sorry. This went on for too long and it's all over the place. So much more has come from this good and bad, but I'll save it for another time.
Any advice, experiences, thoughts are greatly appreciated in advance!!
..... I'm not sure where to begin. I've never written or have been part of a support group, but I know I need advice and maybe vent a little. My name is Erika and my mom was diagnosed with ALS last June. Her symptoms began with her foot dropping about 2 1/2 years. Her symptoms "stayed" on her right leg for almost two years. It wasn't until last January the it went to her right hand and the her arm. I kept hoping it was just a pinched verve, or even a stroke we were unaware of. I kept telling her (and my self) that with some effort and therapy she'd be back to normal in no time, but by early march and after many tests and a really bad neurologist, I was sure it was bad. Her speech had changed. Two neurologists and more test later in june, she was using a walker and a wheelchair for far walks. Her memory seemed off too. My siblings already knew and a sister flew down to be with us the day it became official. I'll never forget their face. Pure devastation. Devastation and fear. We cried and hugged, but my sister and I remained strong for them and told them we'd be there for them. And we have, in our own ways. I'm the only one of 4 sibling living close by. My dad and her live on their own (for now) so he is the primary care taker, but I've taken them to every appointment, medical test, therapy. My sister is able to fly down every now and then for a few months at a time. It still overwhelming. My other two siblings aren't able to be here as often or as long due to work and illness for one of them. We've stuck together and are making the best out of it. We want to take care of her, take trips, make memories and take advantage of the time we still have. Still, I can't help getting upset. We're trying so hard to help her be comfortable and make the best out of this situation but nothing seems to work. She isn't at a stage where she has accepted this yet I think. She has breathing difficulties and is on her wheelchair mostly now. Yet, she won't do her breathing therapy because she doesn't like the way it feels or use her bipap at night because she can't sleep, eventhough her insomnia has her awake most night anyway. She has a harder time eating now too but eats poorly even if she is hungry. Has she given up? Is this a phase? How do we help her out of it??? My dad is tired, and has some hear issues. He was given a mood stabilizer for anxiety. He is not much of a talker either so although we talk, he doesn't say much. He worries me, but my mom refuses to move in with me and my family and my dad want to do what will make her happy. She doesn't want to be a burden even though we've told her over and over she won't be. I want to take care of her and it would actually make it a little easier since we live about half an hour away from each other. We're considering helping them move back to Mexico. Friends,two of my siblings live there and 95% of our family who live close by or at least in the same state. Her doctor said it would be a good idea if we did, since family and the emotional support is something that'll really lift her spirits. It also makes more sense financially, but my sister can't travel for too long due to her illness. So that would mean she'd probably. never see her again. If she stays, my sister and family would move here at least temporarily and all my siblings would get a chance to say goodbye. But....I don't know. I'm sorry. This went on for too long and it's all over the place. So much more has come from this good and bad, but I'll save it for another time.
Any advice, experiences, thoughts are greatly appreciated in advance!!
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