New and a little scared. Can u help?

Hi there,

My father who is 69 is in the process of being diagnosed with ALS. I say this because he has seen a Neurologist who says that his symptoms - Muscle atrophy, fasiculations, weakness, tremendous weight loss along with dropfoot and a few others, combined with positive looking nerve conduction and EMG. There are still a few tests outstanding (MRI and some bloodwork). He has been prescribed Lithium and eventually will get a scrip for Rilutek, though not sure it is affordable for us.

All that said, I have been on the forum looking for info, but just thought I would start a thread that I could refer to, if any of you amazing/brave people would be kind enough to offer some insight and advice to a newbie member of a caretaking team, it'd be much appreciated.

My main concerns now are his breathing. He can not lie flat on his back even with 1-2 pillows. The Neuro has talked about breathing assistance (yesterday was the most recent follow up with the pre-diagnosis) and I am sure he needs a bipap. If his breathing is difficult when he walks and is even relaxing, does this mean that he is further along with the progression than I presume? I know that is difficult to speak to, but I get the feeling that my father doesn't have very long, and since this is all new to him, he feels that way as well. Though I have never expressed my feelings regarding this to him. I try to stay positive with him. I guess I am looking for some insight as to what the bipap can do and if his breathing will eventually plateau or if it will progressively worsen. Not asking for exact science of course, just some general insight.

Sorry for rambling, this is all so new to me that my mind just goes in 100 directions. Any information is good information. I hope to hear from you soon.

Thanks

Raul

Raul,
Welcome. Although I am sorry that you have to be here. Have you and your dad ever talked about a ventilator? My Mom has had one for over a year now and she is doing great. There has to be someone who can care for him 24/7 but Mom says that she is so happy she did it. You will find a warm loving family here and a lot of insight and advise.

I am confused about the lithium though. i thought that those trials proved that it was not helpful in treating ALS. mom takes Rilutek although I don't really think that it does anything. her insurance pays for it.

LauraW said:

Raul,
Welcome. Although I am sorry that you have to be here. Have you and your dad ever talked about a ventilator? My Mom has had one for over a year now and she is doing great. There has to be someone who can care for him 24/7 but Mom says that she is so happy she did it. You will find a warm loving family here and a lot of insight and advise.

I am confused about the lithium though. i thought that those trials proved that it was not helpful in treating ALS. mom takes Rilutek although I don't really think that it does anything. her insurance pays for it.

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Thank you Laura. I have heard the same about the lithium, however his neurologist recommended it, so we are going to give it a shot. We have talked about bipap, and are waiting for the results of a sleep study he had on Wednesday to determine the direction, I just want to help NOW, though I have to respect the protocol. The ventilator your mom uses, is it a tube (invasive) or just a mask?. I guess I need to brush up on my lingo a little.

Raul, welcome, and I'm also sorry you're needing to be in this situation. I think getting the ALSA and the MDA/ALS association contacted would be very helpful. Their loan closets may be where your father gets a loaned power wheel chair, a hospital bed, shower seat or bench, etc. If he's already weak with dropfoot, it's very helpful to get these things in place early, even before he realizes he needs it. Look the organizations up online and call/email for your local chapter. They, depending on the chapter, may even deliver everything to you and set it up. In what I've learned personally as well as through others, the ALS society will probably take your word for it that the diagnosis is in, and begin sending you information you can read now. The MDA required a letter from my doctor stating that I had an ALS diagnosis and even then were slow to send their good guides to me. But you do want both associations involved as they do different helpful things.
Blessings,
Ann

Raul,

I totally agree with Ann. If you can see changes or difficulties in your father's everyday routines, start looking for the items/equipment you think he may need early on. For example, there are several different braces available for foot drop and getting one early may help alleviate some hip or back pain felt while trying to overcompensate lifting that leg higher, as not to drag. My Mom had a better sense of balance with hers early on during the early months of her diagnosis as well. Regarding the bipap, Mom wears hers the entire time she is asleep at night (it took a couple of weeks to get adjusted to it) but we can all see a big difference in her energy level in the morning verses later in the day. It's becoming more often that she'll put in on for a couple of hours in the afternoon while she takes a nap...even that small amount of time makes a difference. We are probably a month or so from "upgrading" to a ventilator.

Ann also mentioned the ALSA and MDA/ALS association. They, along with our local chapter have been an amazing resource. They supplied us with a hospital bed, portable toilet, and power wheel chair until the one we ordered came in. All of those, along with several "tech" items as well. My biggest advice is to take advantage of anyone offering assistance. Hope this helps!

Hi Raul. Sorry about your dad. I've been using a bipap for almost 5 years when laying down or sleeping. It gives your lungs a chance to rest.
We found our groups progression sped up using Lithium. I'd be asking the neuro to check the latest data. The Mfgr of Rilutek will help with paying if you cant afford it.

AL.

Ann, Chris & Al,
Thank you all SO much for the insight. I am feeling smarter/stronger already. My sister and I are looking into a lot of resources and will certainly add these to the list as ell as discussing the Lithium with the Neuro.

Yesterday was a tough day, dad was very depressed and did not eat much, a feeding tube is something we are going to have to strongly consider. He stated that his stomach felt full and forcing food down was a chore. His outlook (for the moment) is very bleak, I am hoping that this is just a phase and when I show him examples of all of the courageous folk in this forum, that his outlook will change.

So, next contact with neuro (Monday for bloodtest results) I will be pushing for the bipap, discussing lithium and a feeding tube.

Again, thanks to you all and keep em coming

Raul

Raul,

You have got excellent help from others on this thread. One of the first things the ALS Neuro doc told us when the diagnosis was confirmed is that there is no cure but we have got much better at managing the symptoms. He recommended staying ahead of what is needed if at all possible. Sounds like that is exactly what you are doing.

I am sorry you have to be here but welcome to the forum.
Dana

Raul, I am so sorry you had to find us. If it as me, I just would not take the lithium. It really has no benefit. I don't know about your dad, but I think most pals want to feel as normal as possible. I prefer people to treat me no different than before the disease. I think sleeping on my side is the most comfortable way to sleep with the bipap, but due to saliva. I can't do it with out it pooling up in my mask, so I have to sleep elevated on my back. Try to be positive.

Phil M said:

Raul, I am so sorry you had to find us. If it as me, I just would not take the lithium. It really has no benefit. I don't know about your dad, but I think most pals want to feel as normal as possible. I prefer people to treat me no different than before the disease. I think sleeping on my side is the most comfortable way to sleep with the bipap, but due to saliva. I can't do it with out it pooling up in my mask, so I have to sleep elevated on my back. Try to be positive.

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Thanks. Yeah we are starting to re-consider the Lithium. I had read mixed reviews (especially recently) but we decided to give it a try. He says it makes him feel weird, I just don't want it to have adverse affects.

just know my thoughts are with you so sorry this has happened