why does he sleep so much..

[NotMyDad]

Hi Everybody,
I only posted a few times in the Newly Diagnosed section. And I find it very difficult to post anything... My dad has been diagnosed in November. He's in Europe, I'm in the US.
Where he is, healthcare really sucks, and I find myself asking questions on different forums, or taking to ALS worldwide...

He has a bulbar onset, almost can't talk anymore, and troubles swallowing. but can walk and use his arms. Just weak and tired all the time.

Anyway, since Sunday he sleeps most of the days almost all day. And doesn't want to eat. Doesn't seem to have any breathing problems, and blood pressure is fine.

Is the constant sleeping something to worry about? There isn't even a doctor that my sister could call....

I wonder if anybody would have any advice for me?
Thank you in advance...

 

[KimT]

He might be starving himself, nutrition and calorie-wise. Does he have a feeding tube? If he wants to live, he will need a feeding tube and need to make sure he consumes plenty of calories. I have some bulbar onset friends who have feeding tubes but still eat the things they like slowly or just drink thick shakes and get the rest of their nutrition through their tubes.

ALS does make one tired. Everything feels like it is an effort. However, not getting good nutrition can really make a difference.

 

[NotMyDad]

Thank you so much, Kim, I appreciate your reply! That's what I worry is happening :-(. He doesn't want a feeding tube, and he even resists the nutritional drinks, because he says they may be bothering his stomach (he has a history of stomach ulcers, too...)....

 

[soonerwife]

My PALS has Bulbar Onset ALS as well.

He does have the feeding tube. Before he started using it for nutrition, he had very little energy.

ALS does cause fatigue as does poor nutrition.

The higher calorie shakes sometimes cause some nausea in my PALS. We had to try a few different kinds before we found the ones that work the best but are still high calorie enough that he doesn't have to eat constantly.

 

[NotMyDad]

Thank you for your reply, Soonerwife.
My mom made my dad check his weight - he lost 5 kgs in one month.
Not sure what to do convince him to get the feeding tube.
And I was only able to find one kind of nutrition drinks where he is - I buy it online, and they only have one kind, with different flavors...

 

[Firefighter58]

Hi there, I totally agree with all the comments to you so far. I find in my case I make it a priority to live as much of a normal life as possible. I wake about seven and retire about midnight, that is the way I have always been and that is the way I intend to stay. I will not let this disease dictate how I live. I have a tube and take all my meds with it, so far I can still eat regular meals although smaller then they used to be but still gained ten pounds. My nerolagist told me four years ago that many PALS live for decades and I intend to be one of them, convince your dad he also can be one and get back to enjoying life.

This disease picked us, we did not pick it so we get up in the morning with a smile on our face and it's there all day. I say life is what you make it.ALS is just an inconvenience not a controller.

Al

 

[Cattaztrophy]

My PALS also has bulbar onset. He's had a feeding tube for 3 months and has only gained back 2 lbs. He eats very little by mouth. Says it's too much work.

He does sleep most of the day. We had his CO2 check and that was only slightly elevated. We've been told it's how the disease progresses.

It makes it very hard to maintain a quality of life. Our time together is so precious and yet I feel so distant from him. He's on a noninvasive ventilator consistently and then sleep so much. Doesn't really want to talk.

I always feel like I should be doing something else to help him.

So sad,
Louise

 

[NotMyDad]

Thank you for your reply, Louise.
I am so sad to hear you're going through a very similar experience. I find it hard to participate on the forum, because I really can find no words to react to all this...

That's my impression and experience as well - that distance, that's growing so fast... I went to visit my father last month, but even there I had the impression that he was far away...
Right now, it seems to me that he's disappearing in many different senses of the word.

I also wish I could do more to help, and feel sad. I write him emails. He rarely replies. I am afraid my emails just make him even more tired, so don't want to torture him even more...

 

[NotMyDad]

Al - you are amazing! Where do you find all that strength.... This is really wonderful! I have the feeling that my dad gave up and doesn't want to fight anymore...

 

[affected]

Every PALS is so very different in so many ways. This disease attacks different areas of the brain and the motor neurons at different rates and in different orders and so makes the disease work in many different ways.

Attitude is important, but disease progression is what it is. You father could have a degree of FTD as many bulbar PALS do, I have no way of knowing from the distance I am from you and you are from him.

However, please do remember it is his body and his disease. You can help all you want and can, and this is really important. But be careful that you don't find yourself deciding what he needs and trying to convince him to take your path. Instead try to find out what he wants, both now and as things progress. Does he have a living will do you know?

It may really help you to deal with it all if you can find this out and work to support what he wants.

This is not a disease that can be fought, so be careful labelling him as 'not wanting to fight' or 'giving up'. This gives the impression he could have beat this disease if only he had done something or other. I know you don't mean that, but it's important to remember that he has a terminal disease that is progressively eating at him and it can't be stopped.

No wonder we all hate this disease xxx

 

[Cattaztrophy]

We used to live in Dale City. Small world isn't it.

 

[lgelb]

Many products can be shipped from the States to Europe. If he doesn't like the nutrition drinks you are sending, there are other options. Does your mom try smoothies and soups for him with high-cal ingredients like nuts, butters, eggs, avocado, etc? Maybe also consider something fun from your shared past -- video, music, posters, toys...have your mom Skype you when it arrives and he is awake and watch the unboxing...

 

[Buckhorn]

My husband sleeps a lot too. His ALS is defined as limb onset, and it has been fairly progressive. He has minimal to no bulbar issues presently. His voice is weakening, but he can speak, chew and swallow "normally". His appetitie is good & he has regained about 15#! (although all belly fat, as most of us know). He is able to walk short distances and has just recently agreed to using a rollator style walker (instead of a single straight cane). He sleeps 9-10 hours overnight, has breakfast and watches some morning news or sports shows, reads a bit on his laptop, then heads back to bed. He is becoming more and more dependent upon his Trilogy ventilator because he says he finds it comforting. Right now he is napping again. He basically gets up for meals, we talk, we watch movies together, etc. and then in between he naps. I think Tilly is correct in stating that the reasons for the sleep hunger vary amongst those with ALS. In my husband's case I think it is a combination of depression/boredom & fatigue from what must be tremendous energy consumption during activities that most of us CALS take for granted & don't even think about.

 

[Duker52]

I have bulbar onset and a tube. All my feedings and medications are by tube. I find I am sleeping more now. Could just be the short days and gloomy weather, but I suspect it is the ALS. If you dad is in Northern Europe it could be weather-related. Just a thought. Bill

 

[scaredwifetx]

Wow Buckhorn...sounds like you were writing about my Steve.