top of page

Newly Diagnosed Bulbar ALS - Advice for you

This is being shared with permission from the author, Ann Chastain. The original was in response to a FB post by a newly diagnosed bulbar-onset person, seeking support. Ann has worked tirelessly to help specifically bulbar-onset individuals and families. Due to the unique needs of their progression. Meg and I had the pleasure of meeting Ann on our travels . Thank you Ann!


A grief and overwhelm like none other. You are not alone and we are here for you.


1. Lingo: PALS is a person with ALS. CALS is a caregiver of a person with ALS. MND is motor neuron disease which is ALS.


2. Rungs on a ladder: it is natural to want to look down the road and want to know what is next. ALS is a disease where the rungs on the latter are experienced uniquely for each one. Progression is the word. While there are core issues and experiences, the changes can feel spontaneous.


3. Stress kills. For over 3 years of observing in multiple groups, knowing over 70 with bulbar and being an end stage caregiver, my greatest encouragement is to make decisions that reduce stress and creates environments of calm.


4. Nutrition is key. A body with ALS enters a hypermetabolic state. Burns more calories than you can imagine. Weight loss is not positive. Tense and deteriorating muscles burn many calories. The easiest way to get the nutrition, hydrations and meds is in a different way...feeding tube. If chosen, get it sooner than later. Why? Reduces stress. Body is stronger for procedure. Allows time to learn and transition while eating by mouth too. Choking. Aspiration pneumonia and dehydration are very real. A tube early and mic-key a month is later is a way to be comfortable. Glasses help us see. Feeding tube helps us eat and drink.


5. Mucus Management is critical. As secretions increase and swallowing changes, a flex tip suction and nasal attachment is essential. The long curved plastic suction is ok, but limits getting mucus out. Suction with nebulizer is a winning combination. A cough assist machine is helpful for some.


6. Falls. Prevent at all cost. Whether a fold, a slide, a drop or an injury fall, it is traumatic to the motor neurons. The healthy ones star failing. The weak ones stop. New ones stop growing. Body awareness is critical. Use the braces, cane, rollator, wheelchair and powerchair. You need to have these and other devices before you need them. Have the next one ready before needed. It reduces desperation and reduces poor decisions.


7. Check out Gleason Foundation. Join local ALS Association. Check out their loan closet. Check out info at I AM ALS. Good people there to help. Get connected.


8. Welcome Support. Sadly, some think independence is not receiving support. The reality is accepting comforting and credible care allows greater and safe life-giving experiences. More people will learn about ALS by the courageous souls out and about. Do all you can whe you can. Let others help.


9. Sadly, ALS is not mainstream in medical world. The white coats may not be as attentive, knowledgeable or educated for a PALS real world needs. While there are a variety of opinions and tips to help with symptons in these ALS group, there are years of information available in the search function is your best friend. Please use it.


10. Grit and grace are a daily need. After the shock of this diagnosis is processed. I hope you will get any personal affairs in order. Then, get living. Make memories. Choose life. There are inspiring people like Juan Reyes and Gary Godfrey among many others who show what living with ALS looks like.


Big hug. We are here as best we can to help you. ❤💙❤💙


Ann Chastain

63 views0 comments

Recent Posts

See All

Comments


Scroll down to read or add comments

bottom of page