New member saying hello

[TypingTerror]

Hi, I just found this forum and joined. My father-in-law was just diagnosed with bulbar onset ALS. He is 64 and has lived with my husband and myself for the past 11 years. In July of this year, he had sudden onset of inability to swallow. His left vocal cord is paralyzed with aspiration of any liquids/solids, so he had a feeding tube placed at that time. He cannot have MRIs done because his neck has been broken in the past and he has metal pins in it now, but the nerve conduction test that was done on Wednesday confirmed ALS according to his neurologist. We were told to expect a significant decline in his condition in the next 6-12 months, but for now, he is doing okay. He is getting disability, and we are in the process of getting him on Medicaid as his FMLA runs out in 10 days and his insurance will be lost. He's already had to have his feeding tube replaced once because it was accidentally pulled out, so we are trying to get things done as quickly as possible for insurance coverage until he is eligible for Medicare in May. His biggest issue besides the swallowing is that he has always been a hard worker, and it is hard for him not working. My husband and I had to convince him to be seen in the emergency room when this first started because he didn't want to call in sick.

As for myself, I am a medical transcriptionist, fortunate to be able to work from home. My husband is looking for work at this time. We have 2 children, a daughter almost 10 and a son who is 6 (and just broke his arm a week ago trying to be a stuntman). The information on talking to kids about ALS has been very helpful. Since FIL has lived with us for so long, he has been a constant presence in their lives, making this even more difficult for them. I look forward to getting to know you here and hope to learn as much as I can about this illness.

Marisa

 

[Al]

Hi Marisa. Welcome. Glad you found us. Hope we can offer some help and support.
AL.

 

[brooksea]

Hi Marisa!

Sorry about your FIL. He is lucky to have you and your family.

I hope you will find the information and support your need here at this forum. We try hard to help each other.

Let us know how you/family and your FIL are doing.

Welcome.

 

[CindyM]

Hello Marisa and welcome to the forum. How is the rest of the family doing now that your FIL has been diagnosed? Write and tell us more when you feel like it. Cindy

 

[TypingTerror]

Thank you all for the welcome I have found out something helpful since I posted. As FIL is approved for disability through social security, he will automatically be eligible for Medicare instead of waiting until May for his birthday, and Medicare will pay for his enteral feedings. That will be a big help for our expenses.

As far as how we are doing, it's hard juggling work, home, and coordination of all FIL's medical appointments and other issues. I ended up breaking out in shingles a month ago from stress, thankfully all gone now. FIL is still able to do everything for himself at this point, so most of my assistance is with doctor appointments. With being a medical transcriptionist, my family has kind of depended on me to know what the doctors are talking about. It helps, but it is different typing about things and knowing what it actually means.

My husband is an only child, so it is hard for him with only myself for support. His parents divorced about 11 years ago (right before FIL moved in with us), and while his mom is very supportive, it's not the same as it would be if they were still married. FIL has 2 brothers and a sister, two of whom live close to us, but they do not have a close relationship and he has not let them know any of what is going on yet.

For happier news, my daughter's birthday is at the end of the month, followed in 2 days by my own. She will be in double digits finally and is the epitome of a tween My son lost his 5th tooth last night and then goes back to the orthopedist on Wednesday to possibly get his cast off if his arm is healing well. Now if I could just keep him from trying to fly again, maybe I won't get any more grey hairs (yeah right LOL).

Thanks again, and will update as we find out more.

Marisa