[Marianne Opilla]

I too have very unintelligble speech 18 months from diagnosis.  I just spent a week with my young grandchildren.  They politely looked at me and nodded when i said something, clearly not understanding a word.  I have a Speech APP that is very helpful and reduces alot of tension on both sides.  (Check with your speech pathologist for recommendations.). Living in a tech world, the kids responded and were relieved when I used the APP.

I do not make any phone calls anymore.  There is always someone around who will call for me.

Pepper I like your shower routine of creating a positive mindset!  I find that people want to be around me more than I think.  But I have to give to get, and try to keep somewhat of a sense of humor when with others.

[Marianne Opilla]

I have traditional Medicare with AARP United Healthcare PartG plus a SuperSaver pharmacy plan.  Searchlight does not provide assistance if you have Medicare.  I have been on home Radicava for a year.  I infuse myself with help from my husband.  Nurse comes to access my port.  My home care pharmacy does a “hard ship writeoff” and I pay a reasonable co-pay until I reach my Medicare catastrophic max.  Medicare is paying about 12,000$ per month.  I believe you can infuse at home if you or family member administers it, and there’s an MD order for it.

I used to be in the home infusion pharmacy business and some pharmacies are better than others with Medicare billing, and it never hurts to negotiate cost with them, or shop around.

[Marianne Opilla]

I have been on Riluzole 18 months and never any nausea.  I also take several supplements, although not Vitamin C, and find that several cause nausea.  Try eliminating one supplement at a time for a few days and see how he feels? “loads of supplements” could be too much and may be taking away his appetite for healthy foods.  Fatigue is part of ALS and probably not Riluzole. I hope you find what is causing the nausea.

[Marianne Opilla]

I asked for my bipap after hearing a webinar.  Now I have asked for the cough assist.  Unfortunately I feel like I have to do my research and then ask for everything.  I do feel better after using the bipod at night.  I don’t know yet if my numbers are better.  I agree totally that the respiratory assistance should be ordered as soon as diagnosis is made, especially with bulbar symptoms.

[Marianne Opilla]

THANK YOU James, Richard, Amanda and Dagmar for having the energy and motivation to promote awareness and raise funds.  After my 4 hour clinic visit yesterday measuring all of my losses and declines in the last 3 months, I do not have the mental or physical energy for anything ALS.  I am going on a month long RV trip Sunday (my 66 Bday) to meditate, soak in healing hot springs, and look at this beautiful country and love my family.

[Marianne Opilla]

Im sorry your family has this burden and you have lost many loved ones to ALS.  But you are charting a course for your family’s future generations to overcome and reverse the “curse”.  Stay positive during the challenging research demands!  You got this!!!

 

[Marianne Opilla]

I just got a new piece of advice from a college friend of my husband’s.  He is offering me LSD to treat ALS.  He will “sit” with me and monitor my “trip.”  I wonder what that would do to my already messed up nervous system?

[Marianne Opilla]

Thanks Amanda for sharing. I can’t imagine wondering for years if/when ALS will be officially diagnosed.  Please try to put speculation in the far back of your brain and live in the moment.  Stay strong and positive!

[Marianne Opilla]

Thank You Kathy for your story.  We are all in this same boat together and your feelings are appreciated.  Like the floating raft picture. Looks like a good day.

[Marianne Opilla]

I have a “friend” who tries to phone me frequently.  I got tired of her incessant comparisons of her health with mine, non-stop chatter, and never giving me a chance to speak.  Lots of advice about diet, and what I “should” be doing.  I don’t answer her calls any more.  One person told me I should learn sign language.  (My hands don’t work).  Another friend told me I should get a job.  Another friend invited me to pickle ball and gave me a marimba to play….I could go on and on!  My list of friend contacts has shrunk quite a bit since diagnoses.

[Marianne Opilla]

I have been on home edaravone infusions since July, 2020.  10 days per month.  I do my own infusions.  I have steadily progressed since then,  but can’t say whether I would be worse if I wasn’t on it.  So, I continue to infuse. I believe something is better than nothing.  No side effects. I do notice maybe some less fatigue with the cycle.

I am also in the platform trial but it is blinded to actual drug or placebo.

[Marianne Opilla]

I wish I lived in a Death with Dignity/Right to Die state, and have a lot of anxiety about ending my life on my terms instead of waiting to choke or stop breathing.  My MD assures me that hospice will take care of me, but I am not sure what that means.  I am thinking about consulting with a local hospice team, otherwise I will have to move to California where I can decide for myself when my time is up.

That is my difficult topic.

[Marianne Opilla]

Richard,

I was a marathon runner, skier, hiker, etc. Never watched TV.  Had a professional career.

Yes I miss it, I grieve about what I have lost. But what choice do I have? Wallow in the tragedy of it, or move on with the hand I have been dealt??

[Marianne Opilla]

Knowledge is power!  I made a video on my phone of my wishes.  I did this before losing my clear speech. Make sure you include full name and date of birth. Send copies to family.  Of course also have POAs set up.

[Marianne Opilla]

I believe in vaccines. Maybe because I am a nurse and one of my friends worked developing vaccines for 30 years.   My husband and I completed Moderna in March.  He was very fatigued for about 4 days.  I had no reaction except arm soreness.  I call it the “get out of jail free” card.  Now my son is comfortable visiting from AZ next week!

[Marianne Opilla]

I only skim on this website. I find it depressing and negative to read about all the research that isn’t a reality for PALs.  I am waiting to hear/read something about FDA approval of Amylyx and NeurOwn, otherwise I don’t read it.

[Marianne Opilla]

I have the same issue with my left foot drop. I also spend most of my day barefooted because I feel more stable in bare feet.  But it is winter, so my feet get very icy.  My golden retriever is a great foot warmer and i wrap blankets, heat pad, socks when I rest.  You could get heated socks or foot warmer pads.

My doctor said it is because the atrophied muscles cannot circulate the blood.

[Marianne Opilla]

Dagmar, Thank you for doing the interview! It is very interesting reading it. We recently got Xfinity TV and it understands me, but how come my husband never understands me? He isn’t intuitive about what Im trying to say either. My daughter can always figure my speech attempts.  Anyway Siri is 50:50.

I keep telling myself talking is overrated.

 

[Marianne Opilla]

I was diagnosed about 18 months ago.  At first, I devoured everything I could find, and tried many things.

Now, I rarely read about research, watch webinars, or visit ALS websites anymore.  It is depressing to learn of so many efforts only to realize they are not available.  I only want to know about FDA approved treatments that I can access.

But, alas, I continue to progress and lose function.  Nothing seems to be helpful.  I just try to focus on one day at a time and forget about ALS.  I enjoy family, friends and my dogs and try to stay positive.

 

[Marianne Opilla]

Tom,

Thanks for your positivity!  Your breathing numbers are great.  I have bipod/trilogy machine and just started cough assist today.  My numbers are in the 70’s.

Yes there are many things we can do with ALS.  My family is amazed at my adaptation skills. Where there is a will, there is a way!

[Marianne Opilla]

I have foot drop too.  I have athetic/running/hiking socks from my “former life” that are tight and dont move on my foot. They are stretchy fabric, no cotton. Nike, Adidas, Darn Tough socks are a few brands.

[Marianne Opilla]

Richard I feel your loss of the skating. You will treasure those memories.  For me it was skiing.  I would put my ski boots on from time to time and wonder if I could ski one more run.  My last ski was epic in March 2020. I went to Switzerland and skied at the base of the Matterhorn.  I re create that in my mind often.  I grieved giving up my Subaru Outback with the ski racks.  Anyway, I guess I have moved into the acceptance phase for now.  At times drifting back into the depression.   I haven’t been able to find any meaning to this horrible fate.

Take care and look at those medals and remember…

[Marianne Opilla]

Well said Tom!  My Reiki Master recommends accessing all the medical and environmental tools I feel will help me, identify supportive positive friends and family and focus on those relationships.  Staying calm and positive will allow my inner body to be open to healing.

[Marianne Opilla]

Aloha Frank,

I, too, live on the water. We live on Smith Mountain Lake in Virginia.  We have lots of porch space so I can see the water.   It is the  #1 thing that seems to sooth my soul.

Take care and enjoy the outside time once your elevator is available.

Marianne