JamieL
Active member
- Joined
- Feb 19, 2013
- Messages
- 51
- Reason
- Loved one DX
- Diagnosis
- 02/2013
- Country
- US
- State
- Texas
- City
- Dallas
Hi all-
My name is Jamie, and I just joined this forum and will go through and read. I've just started this process of educating (un-educating/re-educating?) myself about ALS. My mother has been struggling with all those non-descript symptoms for about a year. I urged them (my parents) to get her in for a PET scan (I think that’s the name) about 5 months ago. Since then it’s been a litany of doctor’s visits, surgery (unrelated to ALS), more testing, detection of a heart issue, possible early dementia, etc. My cousin’s wife is a neurologist and she was very concerned she’d had a stroke. Stroke was ruled out by several doctors so I begged her to ask about seeing a neuromuscular type doctor. Please forgive my ignorance- I’m learning as fast as I can. Anyway, they did all the testing with the needling pokes, took more blood, etc. He didn’t seem optimistic. Of course I used my Google 101 medical degree and, as you all discuss here, freaked myself out about it being ALS. And you know, it wasn’t so much for the general symptoms that could be ANYTHING. It was that those “weird” symptoms she has that I can’t articulate were staring up from the screen, worded perfectly. And I just knew. Yesterday she went back to go over all the latest test results and they confirmed it. She and my dad are actually handling this better than we (the kids) are. They don’t even own a computer, but I want to find them some sort of support group. Unfortunately they live in a small town so I’m not sure what’s out there. They have put her on Rilutek (spelling?) and are encouraging her to get the feeding tube thing inserted. She started off by gaging when she’d take vitamins, which then led to choking when she’d eat, then to the point where sipping water can choke her. My wonderful dad makes her calorie packed milkshakes and gets on her nerves I think following her around trying to force feed her. :-? She is maintaining her weight for now, but she is very very thin and we are sure her lack of strength and energy could be helped if she was getting enough nutrients. But she’s resistant to that tube and I don’t blame her and we aren’t pushing it. Her fine motor skills are starting to be impacted. She sort of drags her right leg a little when she walks. Her energy and overall strength are clearly lessened. I took it as a good sign last night when she told me to “call her back when I can stop crying, because she needs to go soak her whites.”
I’m not sure if that’s a brave face for me, or her true demeanor. But my dad did say they agreed that they are not going to let this dictate their life. They will live their life day to day and do whatever they can to slow the progression. I understand that ALS impacts everyone differently and it moves more quickly in some than others. Her doctor said she could stay just like this for 10 years. Or, tomorrow she could start a rapid decline. And that there is just no way to predict that for any one person. The uncertainty and knowledge of how bad it CAN be in the late stages I think is what is killing me the most. Anyway, sorry for the lengthy introduction. Any words of wisdom are greatly appreciated. But I think I mostly just need to not feel so alone in this right now.
My name is Jamie, and I just joined this forum and will go through and read. I've just started this process of educating (un-educating/re-educating?) myself about ALS. My mother has been struggling with all those non-descript symptoms for about a year. I urged them (my parents) to get her in for a PET scan (I think that’s the name) about 5 months ago. Since then it’s been a litany of doctor’s visits, surgery (unrelated to ALS), more testing, detection of a heart issue, possible early dementia, etc. My cousin’s wife is a neurologist and she was very concerned she’d had a stroke. Stroke was ruled out by several doctors so I begged her to ask about seeing a neuromuscular type doctor. Please forgive my ignorance- I’m learning as fast as I can. Anyway, they did all the testing with the needling pokes, took more blood, etc. He didn’t seem optimistic. Of course I used my Google 101 medical degree and, as you all discuss here, freaked myself out about it being ALS. And you know, it wasn’t so much for the general symptoms that could be ANYTHING. It was that those “weird” symptoms she has that I can’t articulate were staring up from the screen, worded perfectly. And I just knew. Yesterday she went back to go over all the latest test results and they confirmed it. She and my dad are actually handling this better than we (the kids) are. They don’t even own a computer, but I want to find them some sort of support group. Unfortunately they live in a small town so I’m not sure what’s out there. They have put her on Rilutek (spelling?) and are encouraging her to get the feeding tube thing inserted. She started off by gaging when she’d take vitamins, which then led to choking when she’d eat, then to the point where sipping water can choke her. My wonderful dad makes her calorie packed milkshakes and gets on her nerves I think following her around trying to force feed her. :-? She is maintaining her weight for now, but she is very very thin and we are sure her lack of strength and energy could be helped if she was getting enough nutrients. But she’s resistant to that tube and I don’t blame her and we aren’t pushing it. Her fine motor skills are starting to be impacted. She sort of drags her right leg a little when she walks. Her energy and overall strength are clearly lessened. I took it as a good sign last night when she told me to “call her back when I can stop crying, because she needs to go soak her whites.”
I’m not sure if that’s a brave face for me, or her true demeanor. But my dad did say they agreed that they are not going to let this dictate their life. They will live their life day to day and do whatever they can to slow the progression. I understand that ALS impacts everyone differently and it moves more quickly in some than others. Her doctor said she could stay just like this for 10 years. Or, tomorrow she could start a rapid decline. And that there is just no way to predict that for any one person. The uncertainty and knowledge of how bad it CAN be in the late stages I think is what is killing me the most. Anyway, sorry for the lengthy introduction. Any words of wisdom are greatly appreciated. But I think I mostly just need to not feel so alone in this right now.
