ALS News Today Forums » All Posts https://alsnewstoday.com/forums/forums/forum/patients-with-als/feed/ Fri, 24 May 2024 04:25:22 -0500 http://bbpress.org/?v=2.5.14-6684 en-US https://alsnewstoday.com/forums/forums/topic/dry-mouth/#post-25542 <![CDATA[Dry mouth]]> https://alsnewstoday.com/forums/forums/topic/dry-mouth/#post-25542 Thu, 23 May 2024 22:02:59 +0000 luna My husband was diagnosed with Bulbar ALS seven months ago. He struggles with dry mouth and tongue at night when trying to sleep (but has excess saliva in the daytime). He has tried various sprays and gels at night but has very little relief. Do other folks with ALS have this dry mouth/tongue issue at night? Thanks.

]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25539 <![CDATA[Reply To: Fatigue Post Physical Activity]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25539 Thu, 23 May 2024 17:11:09 +0000 Dagmar Sounds like you’ve found a good strategy to follow and it is working for you. 🙂

]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25533 <![CDATA[Reply To: Fatigue Post Physical Activity]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25533 Wed, 22 May 2024 17:10:49 +0000 Lee I have the same problem. Too much exertion of any type can wipe me out for a couple of days (or more). Unfortunately, I can’t trust my body to tell me when I am overdoing it and so can easily do too much. I can still walk (short distances) and love to do so, but always carry a step counter to make sure I don’t walk too much. I work out regularly but am careful to limit how much I do. I try to have days “off” to rest. It is a constant effort to try to make sure I don’t do too much.

]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25532 <![CDATA[Reply To: Fatigue Post Physical Activity]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25532 Wed, 22 May 2024 04:54:34 +0000 Trien Hello Nomad,

I’m sure it’s not a miracle solution, but I’ve recently found that drinking more water (than I used to) works very well for me to combat fatigue. Now that I make sure to drink at least 1,5 liter of water (not counting coffee and other drinks) per day, I feel remarkably less tired, I can walk longer and I no longer suffer from (nighttime) muscle cramps. (Yay!)

It’s a continious search for balance, and although in my experience exercising less leads to less fatigue and less physical discomfort, for me, that does not outweigh the mental benefits and a better night’s sleep. Also I feel that exercising helps me to maintain muscle and posture, and thereby my ability to walk. (I stopped doing it for a while, because of the tiredness, but it quickly showed and I still felt tired nonetheless).

I don’t exercise when feeling more tired than usual and I limit myself to a short session of 10-15 minutes a day (apart from my daily walks). I mostly focus on core stability.

In addition, it seems that mainly exercises (or daily household chores for that matter) where my heart rate exceeds 130 provoke the most fatigue. So I try to stay below that.

Good luck in finding your exercise balance!

]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25527 <![CDATA[Reply To: Fatigue Post Physical Activity]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25527 Tue, 21 May 2024 16:28:35 +0000 Dagmar I’ve also found that pacing is a factor – – as in, normal workouts (sessions) on day 1 and day 2, day 3 is rest/mild exercises. On day 3 I feel like someone switched all the plugs – – lots of uncoordinated moment… but then the next day everything feels stronger and movements have improved mightily, so it’s a day 1 all over again.

Bottom line, allow time for your body-brain to relearn and integrate what you are asking it to do. Don’t push day after day. Plan a light day often.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25487 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25487 Sun, 05 May 2024 00:38:38 +0000 Patricia Koopmans Hello all! I’m asking a question in this thread. Do any of you experience incontinence or have scalp issues? I developed early on and have recurrent bouts of psoriasis on my head. I treat it topically but when I checked google it seems to be yet another issue for us. On the incontinence issue, I think my nerves are failing me there as well. Just wondering if anyone else has these issues. I’m about 18 months since diagnosis.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25486 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25486 Sat, 04 May 2024 17:18:58 +0000 Beth Gabel Having ALS is so hard on us in every aspect of our lives but it doesn’t stop other health conditions which are complicated by ALS. Recently my appendix ruptured and was septic then developed an abscess. I’m able to transfer independently and use the bathroom independently normally. In the hospital I had to be lifted and couldn’t use the bathroom by myself. Couldn’t reposition myself in bed. Pain and weakness was unbearable. It made recovery much longer and more difficult. I was in the hospital twice for a total of 10 days. We weren’t prepared for my husband to have to lift me or shower me or help on the toilet. I had to use the bedside commode because it was easier than getting to the toilet where I have a bidet. I honestly thought I was going to die. Then I felt I would never regain my strength. Then we all had to deal with the emotional aspect of the added stress. Unfortunately we get no reprieve from the “normal ” life of illnesses. As if having ALS isn’t bad enough.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25482 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25482 Wed, 01 May 2024 22:03:45 +0000 Dagmar Debby, I feel for you. But my situation is a little different… I can’t deal with thin liquids. So, I miss drinking normal (unthickened) drinks – – coffee, ice tea, beer. Even ice cream has been off my list for the past 6 years. Oh boy, I sure do miss the ice cream!

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25480 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25480 Wed, 01 May 2024 20:02:58 +0000 Debby I have been blessed to hold off on that but cant do anything except creamy soups and smoothies very well blended. I , too, miss “real food”. Last month was honored by the local Masonic Lodge and had to sit there and watch as others ate shrimp, chicken french, and pizza – so hard! and when my husband has a burger – ohhhh

]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25468 <![CDATA[Reply To: Fatigue Post Physical Activity]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25468 Fri, 26 Apr 2024 14:01:20 +0000 Nomad The days of feeling good after any slightly strenuous physical workout are over. Dwindling away at best without calling on the muscle to grow.

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