sidekick
New member
- Joined
- Jan 20, 2025
- Messages
- 6
- Reason
- Lost a loved one
- Diagnosis
- 05/2021
- Country
- US
- State
- NY
- City
- Somers
My wife past away last March age 68 with Bulbar ALS. She was familia the gene which had been past by her mother. 2 months after the JJ covid shot is when she started showing symptoms slurred and weakness in her left hand. This was May of 2021.
Over the course of the next 2.5 years I learned a lot of lessons which I thought may be helpful to share.
In my experience few doctors or even professionals really don't educate the caregiver or family what the progression is and what to plan for. Planning and knowing what
to expect are very important to help you and ur loved one thru the difficult rode ahead.
Doctors and others will say everyone's journey is different. Which In my opinion is a cop out. Average lifespan for Bulbar I believe is 2-2.5 years. And the progression is basicaly the same.
Eventually you can't eat, speak and if your loved one is dropping weight get a feeding tube, Fast. I Thank God I had a wonderful person from CCALS who was on a zoom call with us and the care team, He not the doctor or other care team suggested the feeding tube. She was 80 lbs and couldnt get enough calories orally. He saved her life then.
Saliva and Anxiety.
Managing the saliva is one of the biggest challenges. Hope you have the respiratory equipment for cough assist and saliva suction. Doctors will recommend drugs but be careful of Thrush. Doctor said stopped the drugs and when we asked for alternative they didn't have one.
But we managed it with medical marijuana tincture administrated thru her feeding tube. Ratio was 8 to 1 THC to CBD. Every 2.5 hours. Also straight CBD for sleeping.
This really worked well. You could change the ratio higher or lower. Managed the Saliva and really help with the Anxiety. The use of marijuana was never suggested by the doctor or care team. I needed to do the research myself. If you are interested I'm in NY. There are many online places to go to get a medical marijuana card. I spoke to a doctor in Florida, licensed in NY and he filled out all the paperwork. The cost was $100 for the zoom visit and all the paperwork. Got the Card in 1 day.
Feeding Tube
If you are ready for a feeding tube make sure they also prescribe an anti reflux. In my case they didn't. Had to take care of it later and getting it in the beginning would have avoided additional suffering. Again you must be vigilant. My daughter who is going to school for speech pathology tells me that anyone with a feeding tube needs anti-reflux medicine. She learned this in one of her first year classes. Also after you get the feeding tube you need formula. Well you can't get it beforehand insurance won't approve it. You have to wait days until the vendor once approved ships it out. You can buy Boost at the supermarket. get the one with the most calories.
What is Going to Happen.
As the Bulbar disease progresses you loose the ability to speak, eat, diaphragm weakens and eventually u get pneumonia. Some get multiple cases. My wife only got it once and past away in her sleep. Get you loved one a letter pad so they can communicate by pointing and spelling words. Up until the last few weeks she was able to communicate with an I Phone app called speech assist. Once she was lost strength in her hands the letter board really helped.
Resources.
The person who help me and schooled me the most about this unforgiving disease was the respiratory therapist. They see it every day and are a wealth of knowledge.
Life extending Drugs.
Your choice but think of your loved one and their quality of life. Who would want to live this.
Ending.
Hopefully I helped some of you as you go thru this journey. I miss my wife of 45 years everyday but I know she is in a better place.
Stay Strong and Show Love and Care because that is what they will remember.
God Bless
Over the course of the next 2.5 years I learned a lot of lessons which I thought may be helpful to share.
In my experience few doctors or even professionals really don't educate the caregiver or family what the progression is and what to plan for. Planning and knowing what
to expect are very important to help you and ur loved one thru the difficult rode ahead.
Doctors and others will say everyone's journey is different. Which In my opinion is a cop out. Average lifespan for Bulbar I believe is 2-2.5 years. And the progression is basicaly the same.
Eventually you can't eat, speak and if your loved one is dropping weight get a feeding tube, Fast. I Thank God I had a wonderful person from CCALS who was on a zoom call with us and the care team, He not the doctor or other care team suggested the feeding tube. She was 80 lbs and couldnt get enough calories orally. He saved her life then.
Saliva and Anxiety.
Managing the saliva is one of the biggest challenges. Hope you have the respiratory equipment for cough assist and saliva suction. Doctors will recommend drugs but be careful of Thrush. Doctor said stopped the drugs and when we asked for alternative they didn't have one.
But we managed it with medical marijuana tincture administrated thru her feeding tube. Ratio was 8 to 1 THC to CBD. Every 2.5 hours. Also straight CBD for sleeping.
This really worked well. You could change the ratio higher or lower. Managed the Saliva and really help with the Anxiety. The use of marijuana was never suggested by the doctor or care team. I needed to do the research myself. If you are interested I'm in NY. There are many online places to go to get a medical marijuana card. I spoke to a doctor in Florida, licensed in NY and he filled out all the paperwork. The cost was $100 for the zoom visit and all the paperwork. Got the Card in 1 day.
Feeding Tube
If you are ready for a feeding tube make sure they also prescribe an anti reflux. In my case they didn't. Had to take care of it later and getting it in the beginning would have avoided additional suffering. Again you must be vigilant. My daughter who is going to school for speech pathology tells me that anyone with a feeding tube needs anti-reflux medicine. She learned this in one of her first year classes. Also after you get the feeding tube you need formula. Well you can't get it beforehand insurance won't approve it. You have to wait days until the vendor once approved ships it out. You can buy Boost at the supermarket. get the one with the most calories.
What is Going to Happen.
As the Bulbar disease progresses you loose the ability to speak, eat, diaphragm weakens and eventually u get pneumonia. Some get multiple cases. My wife only got it once and past away in her sleep. Get you loved one a letter pad so they can communicate by pointing and spelling words. Up until the last few weeks she was able to communicate with an I Phone app called speech assist. Once she was lost strength in her hands the letter board really helped.
Resources.
The person who help me and schooled me the most about this unforgiving disease was the respiratory therapist. They see it every day and are a wealth of knowledge.
Life extending Drugs.
Your choice but think of your loved one and their quality of life. Who would want to live this.
Ending.
Hopefully I helped some of you as you go thru this journey. I miss my wife of 45 years everyday but I know she is in a better place.
Stay Strong and Show Love and Care because that is what they will remember.
God Bless
CF sevou vjep nepz QEMT xomm piif/vumisevi; et zua quopv uav, DCF emupi ot ugvip atif gus tmiiq epf/qs qeop. Tu moli nepz uvjis DPT fsaht, og ov tiint moli vji citv eptxis, tvesv mux, hu tmux. 
