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Tlo57

Active member
Joined
Sep 16, 2017
Messages
46
Reason
Lost a loved one
Diagnosis
09/2017
Country
US
State
FL
City
Winter haven
Hope I'm posting in appropriate forum. As previously posted, my twin brother was diagnosed w/ >90% certainty at Duke w/ ALS. He's had drop foot, weakness, leg, abdominal, throat, neck cramps and significant atrophy.

He had a full MRI ordered by another specialist on the 9/18. Follow up on 10/3 for results.

I detected during our conversation that his words were slightly slurred which he attributed to fatigue.

I asked if he was familiar w/ ALS symptoms, progression, treatment etc. & his response was "NO and I don't want to know."
I didn't want to scare him, so I just said that we need stay informed so we can prepare for what lies ahead.

I forwarded VA/ALS information for compensation that Mr. Atsugi had prepared and posted in the military forum for him to review.

He thanked me for everything and said he loved me. I think he prefers that I handle everything because he's not quite ready to face this just yet.

I guess I'll just keep quiet and wait for him to talk to me about everything when he's ready. I don't know what else I can do.

I'm editing because after submitting this post, I thought how stupid, of course he's familiar w/ symptoms because he's experiencing them. I wanted to know if he's aware of what to expect and what the final outcome will inevitably be.
 
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Tlo, I think it is awesome your concern for your brother. I don't think it necessary to go into the whole "denial" story. I am sure that at some point your brother will accept the possibility of what he is experiencing and seek proper treatment. In the meantime I would suggest you try to get him to join you in a workout program, specifically weight training, maintaining muscle mass will go a long way in his remaining ambulatory Longer. I'm sure you're familiar with the phrase "use it or lose it" with ALS, you lose it much faster if you don't use it. So I believe that you are in the right place For seeking support, certainly your heart is. I pray strength and courage for both you and your brother.

Good luck and God bless,

Tom
 
TLo, your bother is fortunate to have you. I did most of the research and looking ahead for my husband. I did it so that we could be prepared, but I understood his preference to live today and not immerse himself in what he's going to face eventually anyway.

Exercise is good, but the cardinal rule (from D r. Bedlack's crew at Duke) is that anything that takes over 45 minutes to recover from is too much and can hasten progression.

The Duke ALS Clinic is awesome. Keep taking your brother there. I'm assuming from your post that he is a vet, and Duke works very closely with the Durham VA hospital. Have him file his claim and start working on accessible housing asap. Get equipment early and encourage him to use it. Falls are very dangerous for PALS--they often kill or at least advance the disease even faster.

Are you identical twins?

Becky
 
Thanks Tom! My concern was that he gets started w/ treatment. Hopefully when he goes for his follow up on the 3rd he gets started. Due to proximity, we wouldn't be able to work out together, but you make a good point in moderate exercise being important. I don't want to push him too hard, so I'll address it during my visit after the 3rd.

I'm prepared to do whatever is necessary when the time comes, even if it involves relocating temporarily.
 
Exercise is a thorny issue. PALS react very differently so you need to let him set limits. What Nuts said is what my clinic says ( though they give an hour recovery time)

You can't rebuild dying muscle and overstressing the body is bad. Resistance work for unaffected muscles is maybe ok, moderate aerobic work is good if you can do it and recover but I do advice caution. I pushed it ever so slightly ( did an extra 5 minutes of cardio at the gym) and lost a couple of functions forever- could do them when I walked in but never again

I have a personal theory uMND PALS tolerate exercise a little better than LMND ones. Yes stay as active as you can but listen to your body and above all avoid falls and other injuries
 
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Thank you Becky for your help! You've given me a better perspective on living for today and not immersing myself, or worse yet, bringing him down w/ my thoughts of doom and the looming black cloud that awaits us.

I've spent hours researching everything on the internet pertaining to ALS. I'm learning the important basics through this forum, i.e., how dangerous the falls can be and how something as simple as moderate exercise could improve his overall muscle mass. I didn't want to approach the equipment and housing issues in my Mack Truck kind of style, so I lightly touched on how the VA covers the cost of most equipment in the event that it becomes necsessary.

He's hoping his wife doesn't bail when he loses the ability to care for himself, however, if she did, he knows that I would do whatever's necessary, even temporary relocation.

I've scheduled a trip to him on the 10/13. I should be able to get a better idea of where he's at physically, spirituality and emotionally during our visit.
 
The hair on the back of my neck stood up as soon as I read, "Exercise..Use it or lose it." I'm firmly in the opposite camp.

What we think of as normal "muscles" is a system of command--execution--damage--rebuilding. For every muscle movement, there is plenty of activity in the nervous system--including the brain. "Building" muscle usually involves minor damage--micro fissures in the long fibers--and then the body repairs or replaces that muscle tissue. It is during rest periods, overnight usually, that your body attends to the muscle. That's why you get Delayed Onset Muscle Soreness. That's when you're getting stronger, assuming you're eating the right stuff.

But ALS doesn't attack muscles, it attacks nerves that command the muscles. Those nerves are motor neurons, upper--in the brain--and lower, in the brain stem. Of course, traditional exercise doesn't help that. In fact, now that your muscle fibers have been torn down, they might not rebuild in ALS. You might get weaker.

The kind of exercise that I believe is best for PALS is Range of Motion exercises. A physical therapist--IF they're knowledgeable about ALS--can show you how go do ROM.

We did ROM exercises, and it helped my PALS relieve the pain of immobility and joint pain from long periods (hours) of inactivity.
 
The remaining active muscle fibers are already doing their own job plus the job of muscle fibers that have lost connection. And the remaining motor neurons have grown extra connections so they are catering for an increased number of muscle cells. Taken that lactic acid is a stressor and exaggerated stress response is what ALS is all about, I would be very careful with exercising.
 
I'm gonna be honest and admit that I'm confused. I need to read the above posts several x's to fully understand the medical jargon and pros and cons involved w/ exercise.

My brother has a been a car guy for years. He's never been physically active, he's worked long hours, relying on coffee, cigarettes and fast food to get him through the 12 hour days.

He did most of the cooking at home, but because he's no longer capable of lifting pots and pans, his wife has had to take over in the kitchen. Fortunately, she's lived a healthier lifestyle so he'll be forced to change his diet.

He's always been the bread winner so not being able to provide had him concerned. The VA compensation will be a tremendous help.

Again, I've scheduled a trip to see him on 10/13, so I'll be able to get a better idea of where he's at. His follow up appt for his 2nd opinion test results is on 10/3, so at that point, we should have a plan.

On a positive note, his wife's daughter who calls him dad is getting married today in Alabama, so he and his wife made the trip there a few days ago. This is a very joyful time for him!
 
I've found what works best for me is walking on the treadmill (only 1/2 mile while holding on to prevent falls) and moving my arms and legs in the warm swimming pool. Early on I did lift weights and it made everything worse. I do believe in moving, stretching, yoga and any activity that reduces stress.
 
I can see how the pool would be beneficial. I hope you're doing well Kim. Thanks for your feedback. How are you doing?
 
Hi Nikki! It seems that the majority of Pals and Cals are suggesting extreme caution while exercising. If you don't mind me asking, which functions were lost? I'm not being morbid, I'm just trying to understand what he stands to gain as well as lose. My brother was in extreme pain after his fall, he complained that his ribs were very tender. I know I'm a worrier, but at this point, he's not aware of how falls could affect his future progression. I'll feel much better after he gets his test results from the 2nd opinion doctor. I want him to be aware of the do's and don't's. 1st hand information from other Pals and Cals is more valuable than text book info. How are you doing Nikki?
 
Try searching here on exercise, we have discussed many times and you will get opinions and experiences from people over the past years who are not here now to continue the discussion.

The functions that are lost are the functions of the muscles being exercised - the ability for the muscle to receive signals from the neurone. So if you had arm progression and decided to start a regime of arm work then you could hasten progression in your arms with faster loss of function.

Remember ALS is not a muscle disease, it is a disease of a specific neurological system. Trying to force build muscles when the neurone is dying will not work.

Maybe your brother could join the forum and talk with other PALS directly too?
 
I've read quite a bit of literature on the exercise issue since posting this thread.
I Just found out that he fell face down onto tile at work and split his eye open requiring 11 stitches. That had me a wreck!
I haven't been on the forum for a few days because I've been assisting him w/ VA compensation and writing letters on his behalf.
2 more weeks untill I see him & getting pretty excited.
I think this forum would be very helpful for him Tillie, specifically for peer support and hearing other ALS experiences. He's not very computer literate, my goal is to register him and help him navigate his way around. He appreciates my interest in this forum, as well as my deep desire to learn about ALS.
I'll definitely have him introduce himself to everyone.
Thanks to all,
Tina
 
Sadly when a PALS falls, they tend to just go over without any ability to save the fall or even soften it.

That's a great idea to help him join here and show him how to use the site. Lots of people with low IT skills have joined and learned it easily :)
 
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