[Marianne Opilla]

I am so grateful for the scientists, researcher, financial supporters for this treatment.  WE NEED IT NOW!

[Marianne Opilla]

I infuse Radicava 10 days per month.  It has made me feel better and reduced fatigue.

[Marianne Opilla]

Hello Dan,

We all feel the sadness, hopelessness, horror, and the dark cloud that you describe.  And true, it seems that no matter how much we learn, and seek out, the end is the same: nothing. There is really no help for us.  We grieve all that we have lost and it seems endless. You are not alone. I was a runner, biker, skier, hiker, and worked full time as an RN. I worked out several times per week in the gym. All of these things are gone from my life.

But, to exist in a constant state of sorrow is not good for your body.  The negative energy is draining mentally and physically. My son suggested reiki, and I was doubtful, but it has helped me immensely.  I have learned to live for the moment, and be calm and peaceful. Gentle yoga has benefitted me.  I have given up so much, but try to find new pastimes that I never tried before.  I also take Neudexta, which has been helpful in reducing crying and despair.

I find that short rest periods are helpful for re-energizing.  I recently had to accept a wheelchair in the airport, but otherwise, I wouldn’t have made my connection.  Held back the tears and humiliation and just accepted it as a means to an end. I have discovered that I can ride an Adult  tricycle with ease. Cant walk very far, but on that easy to ride trike,  I can keep up with the grandchildren.  I try to do things with friends and family so maybe for a moment I can feel “normal”.

Remember, “It doesn’t matter what we do, it matters why we do it.”

Take Care and I hope you find your way to some degree of acceptance.   You are not alone.

Marianne

[Marianne Opilla]

Johnathan,

Great article! Thanks for sharing.  I sent the petition via my social media and Emails and my family did also.  Many people are signing the petition, but Im not confident it is enough to influence the FDA and manufacturer.  We shall hope, and see what happens.

[Marianne Opilla]

I am followed by a ALS team at a large University Hospital.  My neurologist calls me about research opportunities, video evaluation, even during COVID.  I feel I am informed and up to date. I am also a “pest” and read everything, so take questions and potential opportunities to my team.  Dr. is very approachable and realistic.

[Marianne Opilla]

Hello Robert,

I plan to enroll in platform soon. My team will start recruiting soon.  Have to try what is offered!

Marianne

[Marianne Opilla]

I am in week 3 enrolled in the inhaled Cromolyn trial.  Cromolyn is a med from the 1970’s that was used for Asthma. It has been shown to reduce inflammation in motor neurons.  It is a Phase IIa trial randomized to 2 doses. My neurologist offered me this trial because it is short (12 weeks), proven well tolerated, and no placebo.

Once that is completed, I will decide about enrolling in the platform trial.

I feel that if there is something tooter that can possibly slow progression, I will try it.

[Marianne Opilla]

I was diagnosed 1 year ago.  Taking Riluzole without issue.  I started IV  Radicava 10 days per month in July. The Radicava makes me feel better with less afternoon fatigue.  Even when I am off of it.  It is hard to figure out what is ALS and what is drug side effect at first, but I just think most everything that I feel is related mostly to ALS.

[Marianne Opilla]

I just got the Flu shot, and will get shingles net month.  Have had the pneumonia one.

[Marianne Opilla]

I am so saddened by this news. A life taken too soon by this horrific disease. She is now healthy and at peace.

Hiking and playing music in the beyond.

Marianne Opilla

[Marianne Opilla]

Google the TUDCA and ALS and the AMX0035 studies.  The dosages and results are in several articles. My neurologist says the data is great on this drug. It is held up somewhere for now.

 

[Marianne Opilla]

Hello Ann,

I’m sorry to hear of your husband’s diagnosis but glad he is walking.

I traveled to Switzerland in Feb (diagnosis Sept 2019).  I could still walk well and actually skied.  RV trip to the beach in Oct 2019, along with several long weekend trips that involved hiking/biking.  Glad we did this because now I cannot.

Our children live on the west coast and we are on the east coast, so we usually (pre ALS) travel there by RV for a few months Sept-Nov.  I have gotten weaker since Feb and not sure how much help I will be setting up RV. Also trying to arrange my IV Radicava to be shipped to Arizona, has been a challenge.  But my husband, me, and 2 retrievers plan to make the trip next month one more time before I can’t.

TRAVEL WHILE YOU CAN! Use your COVID precautions and go!  My son + family traveled by air to visit us in July and said he felt very safe on Southwest airlines.  Wear your masks and bring LOTS of lysol wipes for bathrooms, food places, or airline seats.

Godspeed!

Marianne

[Marianne Opilla]

I have been taking Rilozole since December 2019.  Stopped it for 2 weeks in Jan because of reports of side effect of fatigue.  But I think that is the nature of ALS, so restarted it.   I will take anything even if it helps only marginally. My Rx says to take on empty stomach: 2 hours after eating and 1 hour before.  I naturally wake up between 3-5 every morning, so I take it then.  My next dose is 4 PM with not eating between 2-5 PM.  That works for me.

I have no side effects that I am aware of.

[Marianne Opilla]

Maybe consider a consult with a different neurologist.

[Marianne Opilla]

Has anyone experienced taste changes?  Sour and bitter are VERY exaggerated. It is so strong that I cannot eat fruit, yogurt, or juices.

[Marianne Opilla]

Hello Martin,

I believe in exercise for ALS. As Dagmar says, we have unaffected muscles that need to stay strong, plus the mental benefits of exercise.

I do yoga 2X weekly and, now that my gym is open again, will do free and machine weights. I also am still able to do a SPNN (cycle) class once weekly.  The trick is to figure out how much exercise is beneficial and not to over do and become too fatigued.

[Marianne Opilla]

I have had a positive experience at my clinic.  The team is helpful and open. My PT is very supportive of my need to exercise while helping me find the right balance between rest and activity.  My neurologist discusses, at length, any research or strategies to help me adjust and cope. The others, speech, OT, SocWrk are always available as needed.  Most importantly I don’t feel rushed.

I am on a 3 month and whenever needed schedule. Video appts during COVID. They also respond by phone or email.

[Marianne Opilla]

These are really great. Thankyou Dagmar for researching this for me.

Marianne

 

[Marianne Opilla]

My sleep is very poor, mainly because of thoughts and fears running through my mind.  Also my mouth opens when I sleep and the dryness wakes me up.  Obviously, this has a negative affect on how I feel during the day and zaps my energy.  I get up and read, watch re runs of Criminal Minds and Law and Order.  I tried melatonin but no luck.

My doctor put me on low dose Amitryptiline which helps me sleep, but I feel somewhat zombie-ish and feel my speech is more slurred since taking for one month.  It is a trade off: sleep vs. side effects.  I am weaning off and see how I feel, but fear the return of endless nights awake worrying.

Anyone have any suggestions?  Thank you.

Marianne

[Marianne Opilla]

I am always juggling activity vs. rest asking myself what is the right level of exercise? How much rest? How often? I can’t seem to figure it out.

My kids thought I was always drunk when I first had symptoms. I do like chardonnay and it makes me slur even more.  I just warn  my friends and go for it. They all understand.

I too have bulbar symptoms with atrophy of right hand and weakening left leg.  I find that when I plan to be social, I can speak better if I voice rest earlier in the day. Be careful what you order at restaurants and as Dagmar said, nibble.  No one notices. I never get salad because I cant get it on the utensils and it chokes me. (I love salad)

It is a terrible disease robbing us of the things we like to do. But don’t stop trying.

[Marianne Opilla]

Igor,

I too am reading. What is Power Plate.?

[Marianne Opilla]

My team is very excited about that drug. Glad you are able to participate and hope it proves to be something new to help us! Keep us posted! I hope to resume June 1.

[Marianne Opilla]

Hello John,

Thank you so much for sharing your story.  I keep looking at  your picture on the tricycle. What a great idea that I didn’t realize.  My friends plan a bike weekend in DC every spring. They are talking about it again, but I am no longer feeling very stable on my traditional bike.  I considered an electric bike, but very expensive. BUT a bike like you ride maybe the answer to participate on this trip with friends!!!

Also appreciate your comment regarding exercise, and “do all that your body will allow.” This is what I am trying to do, although sometimes fatigue makes me question whether exercise is helping or hurting.

Take care and again, THANK YOU!    Marianne

[Marianne Opilla]

Peter,

ALS are the most devastating, horrific letters of the alphabet. My diagnosis was made in Oct 2019.  I, too, had right hand weakness/atrophy leading  to carpel/medial tunnel surgery. But I also had intense muscle cramping, and twitching (fasciculations) and hyper reactive reflexes which were findings that contributed to diagnosis.  My neurologist ruled out many other diseases through blood work and MRIs,  EMGs and physical exam.  Have not had spinal tap or hospitalization for diagnosis.  His approach is that he is 98% sure it is ALS but will not stop looking for other causes.  To my knowledge, ALS has no predicted course of right to left or slow/fast progression.  It is so varied per individual, making research challenging.

I take Riluzole.  I was to start oral Radicava trial end  of March but delayed due to Covid-19 and  clinics being closed.  I exercise to keep the strong muscles I have remaining. I eat healthy.  I take CoQ10, Turmeric, magnesium.  My tongue has gotten “wonky” and my left leg is slightly uncoordinated over the last year, but I was able to ski in February.

I have read everything on the Internet…proceed with caution.  I hope you do not have ALS but if you do, remember to ‘just do you”…what works and feels good.  We are in this somewhat alone and each journey is different person to person.  Please stay in touch with us!