My Sister Has ALS

[Casey]

Thank you again Igelb! Im flying to Tacoma tomorrow for a month to be with my sister. Its going to be great to be back in the Northwest. Im still trying to get my sister to join some ALS meetups but its taking some time to get her to open up to it. She is slowly coming around. Maybe Ill see you around. We are going to be dancing a pas de deux together for memories as we danced together in ballet school many times before we both became professionals. We might use the film we are making to raise awareness of ALS. Its going to be a fun project. Thanks again!

 

[Casey]

Hi everyone

I have a question about breathing. Im with my sister now in Tacoma and she is wondering about her breathing and what to look out for as far as ALS starting to creep into her lungs.

When she is lying down on her back or sides she is having a hard time getting a full breath. She feels extremely tired and she drifts off to sleep but then stops breathing and wakes up gasping for air. She has been experiencing periodic anxiety attacks as this situation has been understandably difficult to navigate. She is having a hard time understanding if this is anxiety or if ALS has started attacking her lungs.

Does anyone have any information about the process of how ALS begins affecting the respiratory system and what signs to watch out for?

 

[Nikki J]

ALS breathing is usually worse lying down. She should try to get her breathing tested by her clinic. They should do it sitting and lying. Lying is normally 5% lower a bigger difference indicates an issue. I hope they already have a baseline as she probably started high being an athlete. Morning headache can be a red flag. Also weight loss greater than expected for intake

She might be able to do overnight oximetry with her watch or a recording oximeter right away but seeing her doctor should be the plan

 

[Mana]

sorry if this is repetition, but has she talked about Bipap with her care team? My husband has had his Trilogy for about a month and it's the only thing that helps him finally get a good rest at night. He thinks it really helps breathing (although he's still mighty tired)

Glad you can be there with her for a while. That will also probably help!

 

[lgelb]

If she has a smart/fitness watch, looking at changes in % of time in the various stages of sleep given the same amount of total sleep time can also be indicative of an issue, and she can compare the peaks and valleys of her heart rate and O2 variability by hour against the stages of sleep and awakenings. And of course, video to show/hear breathing changes.

Average resting and sleep heart rates are also helpful to track.

Mana, PFTs as Nikki suggested are necessary to get insurance to pay for BiPAP. So that would be the next step.

 

[dbel]

I am sorry to read about your sister's diagnosis. I was diagnosed on 11/2021 at the age of 52. My kids were 15 and 17 at the time so as a Mom I feel for your sister. I live in Lake Tapps-right outside of Tacoma. I just started a drug trial at Swedish in Seattle which helps give me some hope. Here is a link to the webinar regarding the trial in case your sister is interested. It is one of the regimens from the Healy Platform Trials.

 

[Casey]

Thank you so much Nikki, Mana, and Igelb.

Hi debel. Im so sorry that you have been diagnosed with ALS. Thank you so much for the info on the trials. I really hope it helps! We are trying to get my sister into some trials now Ill check out the video for sure.

 

[Casey]

Hi everyone

Does anybody have any remedies or suggestions for muscle fasciculations? My sister is in a lot of pain, particularly in her forearms and quadriceps, with aching and sharp twitches all over. Her doctor hasn't suggested anything and the only thing that she has now is a cream with CBD and a small amount of THC. Any suggestions or ideas would be great to try.

Thanks again!

 

[Nikki J]

You are sure fasciculations and not cramps? Magnesium can help with both. Oral and or spray or cream Warmth may help as well and gentle stretching assisted if needed

If they are actually cramps she could ask about mexilitine. It is a heart medicine. There was a trial about ten years ago to see if it slowed progression. It did not but it was found to help cramps. Cramps may also respond to mustard, pickle juice or quinine

 

[Casey]

Thank you so much to everyone in the ALS Forum for all your love and support. I wish you all the very best for 2024!