[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 my power wheelchair from my chapter.  So far I haven’t used it.

i have foot drop in both feet. Never used AFOs.

[marianne-opilla]

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.

[marianne-opilla]

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 have a tube.

You could also try prune juice in your tube.

[marianne-opilla]

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.

 

[marianne-opilla]

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.

[marianne-opilla]

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!

[marianne-opilla]

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 think exercises dont impact swallowing.  For me, I did exercises for speech and swallow but after 2 years the progression is steady.  Check Dagmar’s blogs, I think she has exercises.

I think the thing that stands out about this thread is that pALS are trying to figure it out for ourselves and there is no ‘standard of care’ between teams.  That is sad since this is the most devastating of chronic diseases.  NO consistancy in care, no recommendations that improve our outcome.  Hit or miss medical care.

Sorry, but after 2 years of ‘nothing we can do’ mentality I am pissed.

[marianne-opilla]

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 Virginia ALS chapter!!

[marianne-opilla]

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 contribute to research but it’s a lot of time commitment.   Living on ALS time, that is an important consideration.  I’m nearing the 2 year since diagnosis window, so will probably not qualify any longer.  It is so great for the future if you can participate!

 

[marianne-opilla]

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 fit correctly.  My dentist made me one and it is so nice not to have my mouth and lips chewed up.  And he didn’t charge me because i think he feels sorry for me and wanted to help.

I also agree that the Trilogy mask distorts natural mouth position.  Especially when tightened to prevent air leak at cheeks.  The mouth guard helps this tremendously.

I also do a “handout” for my appointment and he appreciates it! I cannot speak.

[marianne-opilla]

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 read, and get impatient with my typing.  We had 3 couples visit last weekend and I finally gave up trying to be in the conversation.  The frustration was exhausting.

My husband is getting used to it…finally…the learning curve has been long!  He patiently intreprets for me.

[marianne-opilla]

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 Colorado but it doesnt agree with me. My husband is a saint to have done this for me because I am literally useless.  We got home and sold the RV…LOL.

Then we had family and friends at our house on the lake for 3 weeks.  Lots of kids and chaos. Fireworks (my favorie thing) for 3 nights.  I got in the kayak once but couldn’t paddle it.  I tried a float, can’t support myself for very long.

That’s my summer so far with ALS. Can’t say I’m not trying!! Brave New World for sure.

[marianne-opilla]

All,

Thank you so much for sharing input on the AFOs.  After reading what some of you are doing, I realize that I probably have more gait issues than foot drop.  I will discuss with my MD and PT in more detail again.

[marianne-opilla]

My team likes to suggest research opportunites. I have participated and am currently enrollled in open lable platform.  As far as everyday life I am pretty much on my own to read and ask and figure it out.

[marianne-opilla]

I get tingling/burning across my upper back and scalp. I take Ibuprophen + extra strength Tylenol for that and other aches that i get.  I also just rest which I think is more helpful than anything.

[marianne-opilla]

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..

[marianne-opilla]

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.

 

[marianne-opilla]

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 nothing to offer. I had breathing issues that my neurologist wanted me to go to the ER for, but hospice is able to treat at home.

Hospice is a big decision. It is not about dying, it is care for diseases that have no cure. I had to stop Radicava and rilozole, which I had been on for over a year.  I dropped out of open label CMNAu8, which was making me sick anyway.  I have a RN visit twice a week, and an aide to help me shower.  They sit and talk about “hard stuff” and have been very supportive to my husband and me.  The hospice physician has been very helpful with symptom management, and they provide social worker and chaplain. I can go out of hospice at any time if a big cure comes along.  It is right for me, not everyone.

 

[marianne-opilla]

Janice,

Where do you get stem cell treatment in NC?

[marianne-opilla]

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.

[marianne-opilla]

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!!

 

[marianne-opilla]

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”

[marianne-opilla]

Fran,

Thank you for sharing your experience!  That is about what my PT said.  I am in the second catagory and have alot more than foot drop going on with my declining ability to walk.  But at the same time, i think he didnt want to deny me something I asked for!

[marianne-opilla]

My speech is totally not understood by anyone, and I cannot write anymore.  I also use Speech Assistant AAC.  I just looked in the APP store it is still available.  It is annoying to use, but as good as it gets, and other people appreciate it.  As long as I can type I will use this rather than eye movement device.  By the end of the day communication is exhausting.