Bulbar ALS Question

[Loves]

Good Morning, and thank you for your forum. I have a relative who just recently found out they have Bulbar ALS, though they have been showing symptoms for over 2 years. Currently speech is almost gone and choking is frequent. As you can imagine right now is a very emotional time for them, I'm trying to help them understand that the progression rate is different for everyone, and as this person is elderly it may very well be they will never get to the point of incapacity. They would like to know of any sufferers of Bulbar ALS that have gone a long time before it progressed to their limbs. Could any on you share a story with an example of that? Many thanks!

 

[lizzie11957]

I was ALS diagnosis in October of 2010. I can still swallow soft food and my breathing is still in the normal range. My left hand has been getting weaker, but my right hand and my legs are still strong. I have been in a clinical drug study (Ceftriaxone ), I do gentle yoga, stretching and wide range motion exercises and walk every day. I also got the PEG, cough assist and suctioning machine right away and use them daily. My advice, keep moving as much as possible, deep breathing and go to your ALS Clinic as often as possible. Do everything they tell you to do. They know what they're doing. There are many treatments being tested and showing some positive results. Hang in there and keep moving. (((((hugs)))))

 

[CGAR]

Good advice, love your slogan!

 

[notme]

Look for Barry. He's the resident bulbar expert here I think.

 

[Jellycat]

Hi there Loves, firstly I'm sorry to hear that you have a relative with ALS - it is as you say an emotional diagnosis to deal with. My mother had bulbar onset ALS. She's not an example of very long intervals between progression, but as a contrast maybe it could help as I notice your relative has had a two year progression to loss of voice. As one of the regulars on here says, start slow, progress slow. Start fast, progress fast. My mother lost total use of voice within 7 months from the time when she first had an occasional slur in her voice and that's about the length of time it took any of her muscle areas to go from first sign of weakness to total paralysis.

The fear of what could happen looms large with this disease I think, especially just after diagnosis. I remember my mother insistently asking the diagnosing doctor if her legs would be affected. This at the time was what seemed the very worst prospect to her. Looking back over it all before she died she was able to communicate that the abilities she had most feared losing were not the ones she had actually most missed.

As others have said, look out for Barry who is a great guy, and also a bubarian.

 

[druithleigh]

My mother presented with Bulbar onset in July of this year (slight difficulty swallowing and minor speech issues) and by December 1st she was completely incapacitated and needed full time around the clock care (she died on Tuesday the 13th) so I suppose that my mother's case is one of "worst case scenario" so I don't think it would help to share that part with your relative. I can help you with some suggestions for speech and choking. Firstly, while a speech therapist may not be able to help with your relative's speech problems at this stage they can help with alternatives such as speech aids and instruction on how to communicate by means other than vocal speech. Secondly, choking: there are four things that can help with choking issues. The first is a portable suction machine. A portable suction machine works like the ones that dentists use but much, much smaller and they can be used to help control saliva and phlegm that can cause choking due to the inability to swallow. The second is secretion control through medications such as glycopyrrolate which inhibits the production of saliva. lizzie11957 suggested a cough assist and while they do help with the cough reflex that aids in removing obstruction forom the throat, they sometyimes require a second party to operate and can be very uncomfortable to use as they operate by aggressively pulling the air from the lungs. The third is to alter your relative's diet. This is a trial and error method since different people have problems swallowing foods depending on its texture. One of the things that helps is when drinking liquids try juices that are of nectar (thicker) consistency as thicker liquids tend to be easier to swallow than thinner ones. This can be done by adding rice cereal (found in the baby section of any market) to beverages in order to thicken them. For eating, preparing food in small, easy to swallow peices can help and failing that you can give soup and if its too thin it can be thickened using instant potato flakes. The fourth option, which I suggest only if other eating options aren't working, is undergoing a PEG procedure which is having a feeding tube placed. Essentially, a feeding tube is surgically inserted through the abdominal wall and into the stomach allowing food, fluids and medications to be administered directly through the tube to the stomach. As you relative is elderly, Medicare covers nearly everything a patient would need for the treatment of ALS including home healthcare and hospice (when its time) and the MDA/ALS Association also helps to cover costs, they did in my mother's case.


You must have Hope,
For without hope you cannot move forward.
You must have love,
For without love you cannot persevere.
You must have Laughter,
For every journey undertaken with a light heart is made easier to bear.
You must have Patience,
For patience will allow you to continue in the face of adversity.
You must have Faith,
For with faith you can know that something better waits at the end of the journey.

I wish you hope, love, laughter, patience, and faith knowing that your journey, though painful, will be a fulfilling one ending with stronger bonds than when it started.

 

[Loves]

Thank you everyone for all your repsponses, and I'm sorry that we are all going through this. My mother seems to be an anomoly, she started slurring her words at least 4 years ago, and it only progressed to great difficulty with her speech around May of this year. She can still speak, just very slurred, and she can still eat, just has to be very careful and does choke sometimes, but not always. She is showing some problems with her breathing. She has not problems at all in her limbs yet. I just have to hope that it continues to progress this slowly. I will keep you all in my prayers.

 

[John1]

Hi Loves,

I think you can be confident that she will continue to have slow progression. It is a very good sign that it has not moved to her limbs despite 4 years from bulbar onset.

 

[tammyg]

My dad had Bulbar Palsy. He showed signs in 06 with a slight slerr in speech. After being mis diagnosed for 2 years. Dad passed June 15,1009. His voice just got worse and aorse, we got a PEG in Dec08. Don't wait to long to get the PEG, because the breathing tube down the throat being compromised it had to be done quick or else they will be stuck with the breathing tube forever. Read Kev post about his mom. But I also read another post where they did not use a breathing tube. Tell them they should get the peg before they need it. You can always have it put in and not use it til needed.Simple 20 minute surgery, my dad did not have much discomfort. Made eating alot easier and quicker. When they get the surgery you cannot let anyone know they can still eat at all, or most insurance companies won't pay for it(HOW CRUEL)My dad could still eat apple sauce and ice cream. Good Luck with your family. We are here for you

 

[kiwisally]

Thanks for your reply druithleigh. I found it very helpful and I am sure your mother would be proud.