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Twitcherama

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PALS
Diagnosis
12/2015
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US
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New Jersey
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West Orange
About a month and a half ago or so, my energy level just plummeted off a cliff. It's a struggle to do anything. I get really tired going up stairs. I get tired walking. I get tired feeding. I usually don't really get out of bed until noon. I manage to get a couple feedings in before that, but I collapse back in bed after I come upstairs.

I know my breathing is getting worse. I use a ventilator. I try to use it for a few hours during the day. I'm unable to sleep with it yet. It produces a lot of saliva and I end up gagging and that just throws the machine off. I'm supposed to get botox soon for the saliva, so maybe that will make a real difference. I really hate the machine, though.

I'm also incredibly depressed, so I know that contributes to the lethargy. I'm on a variety of medications and have weekly therapy sessions, so I'm not neglecting that aspect.

What do others do? Are you dealing with this as well? Have you managed to gain some energy? To an extent, I feel I'm just waiting to die now. And I know that isn't happening, but it's just so frustrating to feel this way.

Thanks.
 

ShiftKicker

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Is it possible you may have a low level infection of some sort? Thyroid issues?

I know that fatigue is a major component with a lot of people with ALS/MND (this is my primary complaint), but the sudden drop in energy makes me wonder if there's possibly something else going on too. I don't know how often you visit with a family doctor, but it might be something to think about.

I wish you well. I am sorry you are experiencing such a struggle with finding energy.
 

Vincent

Senior member
Joined
Dec 30, 2013
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958
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PALS
Diagnosis
08/2014
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CA
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ON
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Barrie
I was talking to a lady in the support group I attend and she uses the coffee spoon analogy. When you get up you have a certain number of spoons, these represent how much energy you have for the day. Everything you do that takes energy costs one spoon. when you have run out of spoons you are done for the day. Some days you wake up and you have 10 spoons. Other days you have 2 or 3. This is where equipment comes in. If you walk 2 blocks it may cost you 2 or 4 spoons. But if you use a scooter or power chair it costs nothing. The trick is learning to save as many spoons as you can so you can spend them on something else. Using too many spoons in a day can cost you more spoons tomorrow. Always remember that you have finite number of spoons, spend them wisely.
Vincent
 

Twitcherama

Active member
Joined
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Messages
64
Reason
PALS
Diagnosis
12/2015
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US
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I don't know how often you visit with a family doctor,
I am seeing my primary care doc in a couple weeks. It's been a couple years so I'm sure he'll do lots of bloodwork. Yay.

It was just so odd. I've been lethargic for months, but it wasn't preventing me from running to the pharmacy or anything. Even back in August I was taking my son to and picking him up from camp regularly. I think I really felt it mid-September. I went to a concert and had to walk a few blocks to the parking garage. I was in bed for the next two days. I had never felt like that before. I have no obvious reason why it hit me then, but it did and I don't think I've recovered.
 

affected

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12,061
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You may need to think of it like having passed the point of 'I can breathe well enough on my own'.

With the concert - it may have been a coincidence that you were approaching that point and then that extra effort of walking took you over that tipping point.

Sadly, as a progressive disease what you are reporting is just how it goes - you are managing something with weakness for a while, then it seems suddenly there is a change. But the change was happening gradually, it was the tipping point that made it seem a little sudden.

If you can find the way to tolerate the bipap it should improve your quality again. I wish there were better answers to this :(

Vince's spoon description is pretty perfect too - not all days see you starting with an equal amount of spoons. Using up spoons walking stairs and even just walking about may indicate you are using up spoons doing lots of things that you could maybe look at better strategies for.

I remember for example when Chris would take at least 20 minutes to dress himself of a morning. He would often fall over, and he would finally emerge half exhausted. When he finally allowed me to help him dress he was honestly stunned that it took less than 2 minutes and he actually had all that energy saved to enjoy his breakfast and start his day. He had actually forgotten that getting dressed of a morning was not a marathon because it had gradually become one.
 

Twitcherama

Active member
Joined
Jan 20, 2016
Messages
64
Reason
PALS
Diagnosis
12/2015
Country
US
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New Jersey
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West Orange
I guess you're right. It was gradual and then suddenly I noticed it more. My FVC has been dropping. I'm now mid 40s (it was mid 50s 3 months ago). I'm past the BiPap; I'm using an LTV Ventilator. I never used a bipap. I guess if I can finally get comfortable with it overnight, I should have some more energy in the morning. My doc suggested I start having a home aide come in the morning to help me with feedings and medication. I'm a solitary and private person by nature, but I'm starting to see that I can't do it all by myself anymore. It sucks.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
I view it as taking a shovel full of dirt and placing it in a moving creek. The water then just erodes the grains of dirt away slowly but constantly until all gone. For me I see this nightmare as never stopping so I must be changing my attitude every day.
I can relate to low energy, I am right at the point of starting to use ceiling lift to get out of bed and I don't want to cause I know once I go to a place of major change I can never go back. It's totally NUTS the way our bodies just wear down.
Started bulleting food so to save energies chewing swallowing and digesting all places that take energy even though it's small energy to conserve it for something later is good. Good luck love ya
Chally
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
I can relate to low energy, I am right at the point of starting to use ceiling lift to get out of bed and I don't want to cause I know once I go to a place of major change I can never go back.
In my mind there are two points here.

First "Quality of Life". I fight every "new" tool and change because like Chally says "you can never go back". It is hard to be on a machine almost 24 hours a day and to be stuck in a chair constantly (thankfully I can still transfer but also like Chally I see that coming to an end). That's where the whole quality of life thing comes into play. For me I resist the breathing machine as long as possible each day so that I can talk and try and eat with my wife (don't get me started on eating). I don't do meds because of how they effect my brain. So these are my quality of life choices. I prepare for change but only accept it when I have no other option.

The second thing is that we know we are becoming extremely physically (and in some cases mentally) challenged. So we have to ask ourselves, with what ever amount of days that we have left, what is important for us. For me loving my wife and family is the answer. I define love as serving their needs, wants and desires before my own. To that end, I try and use my energy (both physical and mental) to give to them. This is my choice! The beast can take everything away from me but I can and must not let it take way how I choose to spend the rest of my time. I fail all the time, but I will not let this disease take away who I am.

In conclusion; Decide what is the most "important" thing to you, and use all of your "spoons" or "shovels" to full fill it.
 

Twitcherama

Active member
Joined
Jan 20, 2016
Messages
64
Reason
PALS
Diagnosis
12/2015
Country
US
State
New Jersey
City
West Orange
I fight every "new" tool and change because like Chally says "you can never go back".
That is what I'm fighting as well. I know once I start using the vent overnight, that's a permanent part of my routine, and that scares me. I will not go the trach route, though. Once I'm there, I'm done. But I feel a wheelchair is coming soon, not so much because I can't walk, because I can, but so walking doesn't suck energy out of me so I can do other things. I guess it's balance. I rented a scooter last year at Universal Studios and it was the best decision ever. I felt very uncomfortable using it, because I'd park it and get up and walk. Like, should I be using this since I'm not paralyzed? But I wouldn't have gotten through a birthday trip for my son without it.
 
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