Marianne Opilla

In early stages of losing balance i used a pretty carved walking stick from Amazon.  In the yard i used my ski poles so i could dig in the grass. That lasted maybe 2 months, and i needed rollator i ordered from walmart.   Drive/nitro brand.  Ive been using that for about 8 month only around house.  I have a push wheelchair for going out.   I got…[Read more]

Thank you Dagmar,

guard is very helpful for sleep.  I cannot use a straw anymore. My lips won’t seal and I don’t have suck anymore..

I currently have COVID, so does my husband.  We are both vaccinated + booster. We go nowhere but he goes to grocery store.  My helper tested negative. So, it’s still out there.  Wear masks, Wash hands.

ALS and covid is no fun.  So much mucus and air hunger.   Thank goodness for my cough assist and suction.

Take care.

Jan,

That sounds good in blender, then over mashed potatoes.  I’ll try that.  I have diffculty swallowing too.  But I think I can do pumpkin pie.

I have constipation because of weak abdominal muscles, lack of activity, low water intake due to choking. (no PEG tube).  I’ve tried a lot of remedies.  I like senokot natural with stool softener taken at night.  Not sure if it comes in liquid but I’m sure the tablets could be dissolved for tube.  Miralax is very good too, especially if you hav…[Read more]

Hello Kathy,

We travelled 2 hours for 4 hour clinic.  They really had nothing new to offer me.  I get more solutions on this forum and from my ALS chapter.  I declined rapidly since January, and decided the clinic was not benefiting me any longer. When I mentioned hospice my neurologist was more than happy to refer me.  So I felt he had not…[Read more]

Janice,

Where do you get stem cell treatment in NC?

Mark S,

My neurologist prescribed Nuedexta for the pseudobulbar effects.  It helped me with the inappropriate crying.  It is hard to swallow, but does come in liquid.

After 2 years, I have come to the conclusion it is a complete waste of time.  I was followed by a reputable ALS Clinic at a large medical center.  I transferred into hospice instead.  My local ALS chapter is more helpful than clinic.

Pepper, I am sorry this happened to you.  It must have been scary.

I don’t have the strength to push the iPhone buttons.  we have purchased some alert gadgets from Amazon but returned them.  Unfortunately I don’t go anywhere alone, since I am helpless.   There are medical alert systems you can purchase, but not sure how far they extend.

Glad you are starting platform.  I live 2 hours from my research clinic so that makes it a time commitment for me.  Then when I get there it is 1-2 hour visit.  I hope you get drug instead of placebo! Good luck!!

Everyone has a totally different presentation of ALS, so it is hard to define symptoms and predict concrete outcomes.  Often with slow progression and few involved muscles, as with your wife, it is a wait and see situation.  I hope she continues to do well and enjoy life and stay very positive.

Take care!

I too, have excessive drooling.  The Glycophyrate works, but it gives me insomnia, so I only take it when I am around other people.  I order tissue and napkins in bulk from Walmart, and sit around the house with a “tissue plug ‘ in my mouth.

I never had a speech study because my team said “what is the point” since obviously, I choke. They also t…[Read more]

I am not personally involved because of inability to do much of anything.  I would like to if Icould.

My daughter has sponsored 2 virtual ALS running races to raise money and awareness, and my SkiClub is sponsoring a Walk-A-THON in October.  I hope maybe I can participate in my fancy motorized wheelchair donated to me through my AWESOME V…[Read more]

I just completed Healy Platform for CMN Au8.  Now I am taking open label for 1 year.   I think I was receiving placebo for 6 months because my ALS declined rapidly.  Either placebo, or the drug didn’t work for me.

I slao did the Cromylyn trial, but quit early because it is an inhaled powder and i experienced severe choking.

I wanted to con…[Read more]

I believe dental care is a must.  My dentist is very caring and patient to be sure I am comfortable.  I started grinding with ALS.  Not sure if it is a bulbar symptom?  Also as my mouth and tongue changed I was biting my lower lip and inside of my mouth.  I didn’t realize how sharp teeth are!!  I tried over the counter mouth guards, but they didnt…[Read more]

My grandchildren understand Speech Assistant better than anyone. I guess they are used to electronic voices and have good hearing.  They enjoy the voices and laugh at it, making me say funny things, which is nice for me to get that attention from them!

My friends are another story.  They don’t understand the voice, don’t have their glasses to r…[Read more]

My husband and 2 Golden Retrievers took an RV trip from Virginia to Colorado and met up with my son and his family.  We took a helicopter tour in Durango and a Hummer tour in Moab.  I choked at the western dinner/show and needed Heimlich, but the music was good.  My DIL took me to the spa for massage.. It made me hurt.  We bought marijuana in Col…[Read more]

I have read your AFO blogs!  They are informative.  My ankles wont circle and heels wont raise anymore despite diligent exercise to keep limber and mobile.  My ALS seems to have a mind of it’s own….no matter what I do.  “Invasion of the Body Snatchers”