Hello All, I’ve been lurking on these pages for some time now and feel I should post. My mom was diagnosed with ALS in January of this year. For her, it started out a few years ago as a normal jog one morning. By the middle of her run something was wrong with her left leg, she couldn’t lift it properly and fell way behind her running partner. After a few days she went to a doctor and was told she had a severely pinched nerve on one side and the other side didn’t look much better. Strange since she says she had no pain. They tried physical therapy, which didn’t work and several weeks later had surgery. Her doctor told her the surgery likely wouldn’t fix the problem, but keep it from getting worse. After the surgery things didn’t get better, and one of her muscles later completely atrophied. After tons of tests and doctor’s visits she has now been diagnosed. A second opinion at a different hospital agreed with the initial diagnosis. So it hit our family hard. I found so much research that indicates pinched nerves can cause these types of problems. I really never considered it could be ALS. I know everyone here has been through this, but what a whirlwind. She was lucky to have a lot of sick leave and has gone out on medical leave for now. She turns 61 soon. My father recently retired and will be her caregiver. He just retired in February. Definitely not how their retirement was supposed to go. For now, she can walk with a cane, but it’s becoming increasingly difficult. She also has a walker that she can sit in and be pushed. They also just bought a scooter, which seems to be working well. I am really worried about the whole situation; I unfortunately live in another state with my family and feel so unhelpful to them. I want to be around to help in any way I can, but it will be very hard to transfer down to where they are with my employment. I also have 2 children and my wife and have moved them around the country multiple times over the last 15+ yrs. So for now I’ve got several short trips planned to go see her starting soon and throughout the summer. I think I’m over the initial shook, she has been nothing but positive. As you guys know, it’s just so hard to think about this. Anyways, I feel like I’ve ranted and thank you for listening. I wanted to say, I’ve read through so many of the posts on this board and some of them have really helped. So thank you, this is an amazing group of people here.
Mom diagnosed recently
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Atsugi
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Welcome, Will.
She's lucky to have your dad care for her while he's still young enough to help physically. Your visits will be valuable. Don't worry about being unhelpful--parents don't expect their children to drop their own lives to nurse them. They know you've got your own life to live. If you have questions for us, feel free to post. And you might tell your mom and dad about this website, too, so they might benefit from it.
She's lucky to have your dad care for her while he's still young enough to help physically. Your visits will be valuable. Don't worry about being unhelpful--parents don't expect their children to drop their own lives to nurse them. They know you've got your own life to live. If you have questions for us, feel free to post. And you might tell your mom and dad about this website, too, so they might benefit from it.
anderkling
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Will, thank you for posting, and for sharing about your mom. I'm sure your parents understand that you cannot be there with them all the time. Your mom's positive attitude will help her immensely on this journey. And your phone calls and visits will be valuable and all the more precious. Reassure your parents that you will be there for them as best you can be. It's sad that your parents' retirement plans won't be what they hoped for, but there still will be time to do things and enjoy life, time to go places create lasting memories. I too was diagnosed in January, so know all too well what your mom is going through right now. The very best to your family in this trying time.
- Charlene
- Charlene
Thanks for the kind words guys. I am gonna let my mom know about this site and get her onboard if she wants to. And Charlene, so sorry you and my mom are starting this journey at the same time. Best to your family also.
MaxEidswick
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Welcome Will ...
like all the others, sorry to meet you here but welcome!
The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.
before trying miracle cures, etc., ask here, go to alsuntangled dot com.
Lastly, anxiety can be debilitating so beware.
Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.
Kind regards and warm welcome,
------
> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done
)
like all the others, sorry to meet you here but welcome!
The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.
before trying miracle cures, etc., ask here, go to alsuntangled dot com.
Lastly, anxiety can be debilitating so beware.
Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.
Kind regards and warm welcome,
------
> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done
)
gooseberry
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Welcome Will to you and your family. Our group has a wealth of knowledge and experience and will prove invaluable to you and your family. Any questions you have please ask. The doctors don't necessarily have all the answers though they try. People on this site have practical hands on knowledge for which there isnt a substitute
sisterpain
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Hi Will, Welcome to the group which nobody wishes to be part of but everyone feels lucky to have found. I have been reading these posts every day for the last 3 years and have helped me tremendeously. I just started to post only a couple of weeks ago..
Based on my experience with my sister, the first thing you have to do, is advise/help your parents to prepare the house. You want to be ahead of the game. While the scooter can help for a little bit it maybe that she will not be able to get herself in and out of it. Getting the equipments you need, ramps at the doors, wheel chair accessable bathroom and shower are the main things that you need to take care of as soon as possible. We found that the commode chair has been an indispensable thing to have, we consider it a blessing in our house.
Emotionally, you take one day at a time... There is life with ALS and there will be so many events that you will celebrate with your mom, although sometimes hounted by the feeling that this might be the last you should try to enjoy everyone of them to the fullest. I am sure she will look at life and relationships differently after the diagnosis, bring the grandkids more often to her and make memories so they will never forget their grandma. Also do not ignore her signs of depression (crying every day for example), of course if she has any.. and address them with her doctor. there are medications for that which help a lot.
The other suggestion i have is evaluate your resourses and see what help you can provide to them It could be helping with a caregiver, or setting a time aside every couple of weeks or however often you can to spend time with her to give your father a break. Any practical hands on assistance is helpful. Even ordering food and having it delivered to their door is helpful..
Based on my experience with my sister, the first thing you have to do, is advise/help your parents to prepare the house. You want to be ahead of the game. While the scooter can help for a little bit it maybe that she will not be able to get herself in and out of it. Getting the equipments you need, ramps at the doors, wheel chair accessable bathroom and shower are the main things that you need to take care of as soon as possible. We found that the commode chair has been an indispensable thing to have, we consider it a blessing in our house.
Emotionally, you take one day at a time... There is life with ALS and there will be so many events that you will celebrate with your mom, although sometimes hounted by the feeling that this might be the last you should try to enjoy everyone of them to the fullest. I am sure she will look at life and relationships differently after the diagnosis, bring the grandkids more often to her and make memories so they will never forget their grandma. Also do not ignore her signs of depression (crying every day for example), of course if she has any.. and address them with her doctor. there are medications for that which help a lot.
The other suggestion i have is evaluate your resourses and see what help you can provide to them It could be helping with a caregiver, or setting a time aside every couple of weeks or however often you can to spend time with her to give your father a break. Any practical hands on assistance is helpful. Even ordering food and having it delivered to their door is helpful..
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