Old 03-16-2017, 11:42 PM #1 (permalink)
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Default Recently Diagnosed

Just wanted to say "hi" and to thank you for all the valuable information you provide about ALS. I have been visiting this site since the summer gathering information and hoping that all the symptoms my dad had would not be ALS. My dad just got diagnosed 2 weeks ago. Although the doctors have not told us the type of ALS, I'm confident that it's progressive Bulbar as he can no longer speak. He has lost a lot of weight and we are on a wait list for feeding tube. I'm hoping it happens soon as I fear that he will be to weak to get one. I'm worried about my dad as he does not want to talk about it, sleeps a lot and I know is depressed. He just lost his speech which has been a real set back. I feel so helpless and I can't imagine what my dad is going through but want to help him the best I can. Any advice? Does the feeding tube help get the weight back on?
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Old 03-17-2017, 12:36 AM #2 (permalink)
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Default Re: Recently Diagnosed

Hi, Rebecca. Welcome.

A little advice, as requested, and a question. Does he have a full-time caregiver?

The feeding tube is good for meds, too. There is a lot of discussion about it. Search. It's got pros and cons.
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Old 03-17-2017, 08:52 AM #3 (permalink)
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Default Re: Recently Diagnosed

Hi Mike,
My mom is the primary caregiver for my dad but she was also diagnosed with a neurological disorder 4 years ago. I'm 2.5 hours away but come up every 2nd weekend to help out and try to keep things upbeat. My family does have a good sense of humor which has definitely helped us all get through this. We will be meeting with our caseworker next week so hoping to get some help there. It's taken some time to get answers but I'm worried that there's more we should be doing and the weight loss has me concerned. We did talk to the ALS nurse about the feeding tube which they recommended. My dad is not so keen on it but is on a waiting list. It will be his decision but hoping that he will go for it. I'll look more into the pros and cons of the feeding tube. So many decisions. Thanks so much for responding to my email , it's really appreciated!
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Old 03-17-2017, 09:32 AM #4 (permalink)
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Default Re: Recently Diagnosed

So sorry to hear about your dad's dx.

My PALS had lost about 20 lbs in 10 weeks before he got the feeding tube. He gained 4-5 lbs after he got it and has maintained close to that. I think it is possible to gain some weight back. I hope he can get it soon. I do understand his resistance.

The shock of being dx'd takes time. I am sorry your family is going through all this. HUGS!
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