New here father of ALS patient

[Larry48]

Hello everyone, My name is Larry. My daughter Erica was diagnosed with ALS a month ago. Her symptoms started off with muscle twitching. For awhile she thought the twitching was happening due to her not sleeping enough at night. Back in December, she noticed she was slurring speech. She went to a doctor who referred her to neuro specialists who diagnosed her after a series of tests.

My family is devastated, my daughter will be 26 on March 15. She graduated from college back in 2007 and has been working in marketing since then. She is still working right now and will eventually stop when she becomes weaker or her speech gets worse. She has moved back in with my wife and I. I'm retired and my wife plans to retire in a couple of years. I will likely be my daughter's first caretaker and I'm wondering if there are any other men who care for their wives or daughters.

 

[Lavender Lady]

I am very sorry to hear of your daughters fate and so young. I am most impressed that you are already ready to step up and care for her in your home. My husband is my primary caretaker as are many others. He tells me it is an honor and I believe him. It is love that bears all things. It is very hard watching those you love go through this, so make sure you have lots of support and enjoy life to the fullest. She is lucky to have you for a dad. I will pray for her to have slow progression.

 

[Danijela]

Dear Larry,

so sorry to hear about Erica's diagnosis. With here being so young there is a chance of better prognosis, slower progression and many more years together. A friend of mind has been diagnosed at 28, and she has progressed very very slowly. All the best. Dani

 

[joni51]

Larry I am so sorry about your daughter. It breaks my heart that she is so young. Yes there are caregivers that take care of there kids, and husbands that take care of there wives. You will get lots of support here

 

[abbas child]

Hi Larry,

I'm so sorry your young daughter has this disease, but your willingness to be her first caregiver is wonderful.

My husband is my primary caregiver, although he is still working--but telecommutes part of that time. He doesn't get on any forums, but has read a lot on the internet, and looked at various threads when I urged him--usually dealing with equipment. We're at the point now that he does all cooking, helps me brush my teeth and wash face, and also hoists me with a sling from hospital bed and power chair as well as shower me...the last bit requires his getting in the shower with me, so someone else will have to "teach you" how to shower your daughter if you're caregiving at that stage. I hope your daughter's progression is very slow. There are many here (not I) who presented with bulbar symptoms, and who can give you pointers and encouragement.

Very best wishes, sympathy for you all, and prayers,
Ann

 

[SMillheiser]

Larry,

Please make sure you take some time for yourself to avoid burn out. When necessary, my foundation can help with some respite care that will allow you to decompress, relax, do things outside the house etc. Our website is at ALSGuardianAngels.com. You can ask around the forum to verify that we are for real.

Stu 949-233-3045

 

[Gusflower]

Hi Larry. I'm so sorry to hear that your daughter, and someone as young as 26 catch this. This is the best place to come for advice.

 

[LizT]

Truely heartbreaking. so very sorry! But i am glad you have found us and i hope that you decide to stick around.

 

[tdamess]

sorry also i know how you feel excatley , my son has it but , he has a wife who will do most of the caring so i can not help you there just want you to know i am sending you hugs and wishing you the best of what you need ... p.s. stu is a wonderful kind man and runs the alsguardianangels . call him if you need anything he will go to bat to see that your daughter gets what she needs as well as you

 

[Larry48]

Thank you all for the kinds words and welcomes. Sorry I didn't post here sooner. My family has been busy with other things. Erica is doing ok and her doctors are hoping she will progress slowly. Her speech is pretty much the same and we are researching speech devices for her.

 

[Chase_Corin]

Hi Larry,

I share your daughter's Birthday but I am 33. I have been a caregiver for my father since his diagnosis in November of 2010. Actually before that since his symptoms started over a year prior.

I can understand your daughter's drive to keep working. She is trying to keep things normal for the time being. Her being able to work gives her a sense of purpose and allows her to have pride in herself. My father is much the same, although he is retired he prides himself with his hobbies and being able to do things on his own.

The hardest thing for ALS patients is asking for help specially the ones that are so active in their lives. My father was a forrest fireman and an active member of the ministry of natural resources for his entire life. He is also a proud man, he was always strong and able to do things. Even able to figure out the most complicated things. It is hard for him to admit he needs help and I think it will also be difficult for your daughter.

Allow her to do as much as she can while she can do it. And when she can't she might not accept it and there might be tears and frustration. Being around her age I can only imagine how I would react to having ALS myself. I think being a caregiver gives me a little but of insight.

Your a good father, taking care of your daughter like this. I am sure you will be there when she needs you.

 

[jmontana]

My son was recently diagnosed with ALS in February 2011 he is only 22. His symptoms started over a year ago and he started seeing doctors last March. His symptoms started in his left hand. Hes had to give up his job. We live in different cities and I am working on trying to move closer to him but right now he is managing on his own. I'm not sure what to do.

 

[tdamess]

My son was recently diagnosed with ALS in February 2011 he is only 22. His symptoms started over a year ago and he started seeing doctors last March. His symptoms started in his left hand. Hes had to give up his job. We live in different cities and I am working on trying to move closer to him but right now he is managing on his own. I'm not sure what to do.

i cant imagine how hard this is on you , i learned when my mom got sick (and she had moved to another state 16 hour drive from us ) that i would never do this to my kids i would love to move to a cheaper state to live in so , i am glad i never moved my son was diagnosed in July 2009 and started the same way as your son he was 37 and i thought that was young , but your son is so young and i realized lately Lou Gehrig was only 37 himself ... so sad

 

[helpinghand13]

Larry,

I'm so sorry to hear about your daughter. I hope her progression is slow.