Conserving energy for ALS patients is one of the key factors to being able to maintain a somewhat active life and to continue to be engaged with family and friends. You see the body is constantly on overdrive because the nerve ganglion are firing constantly in the hopes of getting signals to the muscles. However the nerves are damaged and simply can’t get the message to the muscles. So metabolically the body is on Overdrive and consuming calories and burning muscle tissue. This is why it’s imperative to drink plenty of fluids to flush the waste out of the body and to maintain hydration.
Here’s the rub though PBA is known to also cause urinary urgency and many ALS patients don’t want to drink fluids because they’re constantly going to the bathroom. So this is a double-edged sword, many ALS patients end up dehydrated and malnourished. Added to this is the fact that swallowing and eating become increasingly more difficult as the condition Progresses.
This is why a feeding tube is necessary, and it is often highly recommended that the feeding tube be placed while one is still healthy and able to tolerate the procedure. Maintaining a healthy BMI has been tied to having a longer lifespan for ALS patients. So you can see my surprise and joy at being told by my first neurologist “dont lose any weight”. I have tried my hardest to comply with this medical order, LOL.
Back to maintaining rest, it’s imperative that if the patient wants to be active and stay connected with the family that they conserve energy throughout the day. There are many ALS patients who are still very active, I’ve known some that still run and apparently it helps their condition. Not to mention that it helps your mental health also. Exercise is recommended for ALS patients but in moderation so as not to burn out the muscles. The recovery phase after exertion is exponentially increased. Just to give you an idea if I have a very active day where I’m up and down out and about it may take me 2 days to recover. We’re talking about multiple naps laying down and just taking it easy.
There are ways ALS patients can conserve energy while they are still able to move around. This is by using power wheelchairs and of course walkers in the home to prevent Falls. I tend to spend quite a bit of time in my recliner and in the bedroom throughout the day because I know when the family gets home from work and school I want to engage and be a part of it. Of course there are some days where I’m simply too tired and I relegating myself to the bedroom to rest. Now recently I’ve noticed that if I spend a good portion of the day in my wheelchair my lower legs will become swollen. Having a medical background I knew exactly what I needed to do, so I got some compression socks and voila no more swollen legs.
Last night when Meg with filming the post that included our kids we had a friend asked if I was tired or if my voice is being affected. This was a very good question and one that I would like to address. The answer is both by the end of the day my voice can become weak to where I’m only able to whisper and if I exert myself to speak loud it can sound like I’m intoxicated as I try to get the words out. This is also compromised due to the fact that ALS can affect the central nervous system, thus PBA. However this also affects swallowing, breathing and speech. As I have mentioned previously ALS is unique to each patient, in the past I have encountered several individuals whose initial or only symptom was losing their ability to speak. So what I need to do is a limit my live post to the morning so in my voice is normal, LOL.
Have a super fantastic day one and all!
The Juan and Only