Survived my first ALS clinic!

[slopokahontas]

I survived my first ALS clinic. It was so intimidating and surreal have specialist after specialist enter the room having me do all sorts of crazy things. I'm grateful they have a specialized once, but I think I might still be in a little denial still because I slowly realized this clinic was only going to track my progression and guide me through it. They won't make me better. I expected samples of hair etc to be taken, scientists trying to sign me up for trials. I'm sure everyone here has gone through the "what can I do to fix this" stage. Is hard to accept that this is it! This will be the best I will be! I feel like running in a science lab and throwing myself on a table and saying "try anything, just at least try"! I plan to donate my body to science, but doesn't help me now!

 

[nebrhahe53]

yes it is very sad each day is the best one you have left physically. I have tried to sign up for clinical trials and have not yet been able to get in.

 

[MaxEidswick]

>I think I might still be in a little denial still because I slowly realized this clinic was only going to track my progression and guide me through it. They won't make me better

yup, I call it my death watch, but I have found some value: I am now doing what I can to hold as steady as possible -- breath stacking, neck support, bike, etc.

IIWII ("It Is What It Is!") ...

 

[cheerleader]

Dear Stopokahontas, your great sense of humor will be such an asset to you! Think it's called "Laughing so you don't cry!" We all get how overwhelming clinic is, especially the first time. You will find certain people are more valuable then others- for us, the social worker and the psychologist were our biggest allies, as you are so right! No one will make you better! But they will help guide you, and take much of the burden off you, by following up on things. The psychologists even talked to our adult children to support them! One thing that helps is taking another person with you to clinic. In my role as CALs, I have become a great secretary, taking notes during these clinic days. Too hard to remember all that was said if you don't have a note taker! Good luck in processing everything. We are here to help you, as we know the overwhelmed feeling you must be having right now! Donna

 

[slopokahontas]

What is breath stacking? I didn't have a counselor there. A speech therapist and nutritionist said if I want a feeding tube, do it soon. Not sure when soon is. Told me I have a lazy tongue and swallow with my head turned. Also, to stop clearing my throat and swallow....easier said than done. Also want me to seriously consider a cane and wide handled utenciles.

 

[MaxEidswick]

they give you your fvc? I'll dig up a note on breath stacking after I restart a server test ...

 

[MaxEidswick]

"Stacked breathing, also known as breath stacking, is a specialized type of exercise that typically caters to people who have respiratory difficulties, but also benefits athletes and virtually anyone looking to improve their lung capacity and breath control during exercise. Practiced regularly, breath stacking produces numerous benefits for athletes.

Technique

To perform stacked breathing exercises, simply sit on the edge of a chair or bed, keeping your back straight and shoulders relaxed. Take a small breath, focusing on filling the base of your lungs, and hold for a second. Without exhaling, take in a larger breath and hold for one more second. Finally, take a big breath that fills your lungs as much as possible and hold for three to 10 seconds. Purse your lips and exhale slowly.

In Your Regimen

For improved breathing during your workout, perform stacked breathing techniques up to four times daily. Ben Peterson, author of "Triphasic Training: A Systematic Approach to Elite Speed and Explosive Strength Performance," recommends following your regular workout with five to 10 minutes of breathing exercises such as stacked breathing and deep belly breathing to improve exercise recovery.

Core Benefits

The process of stacked breathing exercises the muscles of the chest and stretches out the lungs, which helps improve lung capacity and increase oxygen intake. Breath stacking also results in improved airway clearance."

 

[slopokahontas]

Ok, thanks for the info. Going to start doing that.

 

[MaxEidswick]

>Ok, thanks for the info. Going to start doing that.

I have an Outlook reminder that goes off every 2 hours and I do it twice while running the dogs twice a day if I can (damned pneumonia!)