[Marianne Opilla]

Thanks, I will check that one out.

[Marianne Opilla]

There is a good webinar which addresses coping and the brain-stress relationship and it’s affects on health and well being. It shares scientific research evidence of the benefits of positive thinking Dagmar refers to.  This webinar was helpful to me to climb out of my ALS “black hole”.

everything als.com

Click on videos from the menu.  Go to August 12,2020.  “Care for ALS: Mind Body and Spirit”.

[Marianne Opilla]

There are no guarantees in life. Anyone, whether ALS or not, could die today, tomorrow, next year. No matter what age.  The way I see it, I have a 50:50 choice every day that I wake up and still have ALS.  I can be positive or negative.  I eventually decided to always try to show up for life and be positive.  It helps me and those around me.  Enjoy simple things, a sunrise, music, birds in the yard. Read positive scripture or meditation.  Thank your legs for moving or your throat for swallowing for one more day.  No it isn’t easy, but my life was never guaranteed to be easy.

[Marianne Opilla]

Susana,

I too have had many wakeful nights since diagnosis Sept 2019.  I also have hip pain and my legs cramp and have fasciculations keeping me awake.  I take Melatonin and Magnesuim at bedtime, which seem to help.  I also take Ibuprofen sometimes for the hip. (of course check with MD first).  I also take a hot shower before bed and listen to music or stories on the “Calm app”.  I hate to deal with insomnia with so much to worry about making it worse.  Last resort, I just get up, go to the couch and watch Law and Order reruns. They put me to sleep!

 

[Marianne Opilla]

A life alert system works great. You wear it and push a button. Im not sure Alexa would understand me as Siri doesn’t.  My local ALS chapter and my ALS team have a technology people who come out for free to evaluate things like that and give suggestions.  I think since COVID they might do the home visit by zoom.

 

[Marianne Opilla]

Hello Lisa,

Dagmar’s blogs on exercise are great!  They were quite helpful to me.

We all seem to have a differing presentation of loss of function.  For me, atrophy and weakness seemed to occur together.  I too, was muscular and very active, so mentally, it is hard to give up some form of exercise. You will have to figure out how much and intensity works for you.  I definitely have increased cramps and fasciculations with any activity.

I was diagnosed Oct 2019.  I have tried all sorts of exercise, but have settled on a gentle yoga class 2 X weekly and have an electric tricycle. Occasionally go to gym and do some light eight machines. . I still take care of my self and do household chores, which I consider exercise.Don’t know if any of this has impacted my right hand, arm, and left leg atrophy progression.

Try to keep moving and get outside!

[Marianne Opilla]

I am starting platform.  At least I feel like I am doing something, even if I randomize to placebo.  I had my screening visit and am waiting for drug visit in January.

[Marianne Opilla]

I recommend “I remember running: The year I got everything I ever wanted–and ALS” by Darcy Wakefield.

I related because I was a marathon runner before ALS.

If you like ALS movies, “You’re Not You” with Hilary Swank.  I got this on AmazonPrime.

Of course, both of these have a sad ending.

[Marianne Opilla]

At first, I didn’t tell anyone.  Now a year later I usually tell people up front because of my speech.  My husband insisted that it was better to just tell people rather than have them guessing.  He was correct.  I usually also admit that “It SUCKS” getting that out on the table too.  I find most people are very understanding and caring once they know my situation.

[Marianne Opilla]

Something you could try are smoothies. Load them up with calories from milk, ice cream or yogurt, peanut butter, and add protein powder.  If you use a straw in the back of your mouth, it bypasses the messed up taste buds and may be better tolerated.  Many good recipes on the internet.

[Marianne Opilla]

I work with a Reiki Master, meditation and yoga.  My instructors know what I am dealing with and have been very personal with helping me maintain a more positive mindset.  It wasn’t easy…days and days of crying, anger, and hopelessness.  Now I have learned the best thing for me is to live one day at a time and be grateful for that day.  Try not to dwell on what my future might be.

[Marianne Opilla]

Thank you Amanda for these EXCELLENT resources!

[Marianne Opilla]

My taste buds are also changed.  I cannot eat many fruits or juices, and strangly, strong cheese like sharp cheddar.  It seems to be bitter and sour flavors.  The speech pathologist had not heard of this with ALS.  I think my tongue has gone thru so many changes that the taste buds have been negatively affected.

I have always been a chardonnay drinker for years….no more.  Too sour!

[Marianne Opilla]

My doctor wrote me a prescription, but Medicare told me they only cover 1 piece of DME (durable medical equipment) per 5 years.  I have straight Medicare Plan G.

I figure if I eventually need a power chair I would use the coverage for that.  Seems ridiculous for ALS only 1 equipment per 5 years.  So I ordered my rollator from Walmart.com.

[Marianne Opilla]

I ordered the Drive Nitro Euro Hemi (for short people.)  I am only 5 ft tall.  I’ll let you know!

[Marianne Opilla]

This is timely. I just got my Rx for a rollator. I read your articles and wonder about the seat. My legs need a rest break and I get up and down OK from a seat.   I too, am not happy with using one, but my Therapist took notice when I told him I look forward to a shopping cart!  I cannot walk very not far on my own and feel trapped when I cannot go where I want.  My doctor keeps telling me I am going to fall as I hobble around. I guess it is time…

I also got an adult tricycle – electric and pedal-so I can bike with friends and grandkids and spend time outdoors.  It is the BEST!

Marianne

[Marianne Opilla]

I was diagnosed 1 year ago.  Yes I went through denial, as did my family.  I still think it is just a bad dream.  I try to be positive, which allows my body to heal, but have periods of sorrow, defeat, and crying.  I imagine it doesn’t matter how long since diagnosis, we will never get used to the bad news we have ALS.

There is so much more promising research hopefully available in 2021.. even compared to 1 year ago.  We must take care of our general heath and be strong so that we can benefit from new treatments that are in the near future.

[Marianne Opilla]

Ilana,

Thank you for sharing your rituals for coping with a terrible disease.  Instead of being angry at my legs for not working, honor them for all they have done for me! Any situation can be flipped to another perspective.

[Marianne Opilla]

My husband and I are also enrolled.  He is a non-ALS “control” subject.  My speech is worse in the evening so I alternate each week recording AM and PM speech.  I agree, it is very easy and quick.

[Marianne Opilla]

Thank you Veronika for your outline. We can all take strategies from each other to deal with ALS.  Information and research is empowering, except when we cannot access it.  Family is our foundation in ways we never dreamed were possible. Friends also can be uplifting. Who ever expected we would be in this “ALS Club”?

[Marianne Opilla]

I am lucky so far. Left foot -right hand affected. So I can drive. My husband worries about fatigue and driving so I just drove local. My appointments are 2 hours way so he drives me. (Although I think I could take myself)!

[Marianne Opilla]

Nancy,

Love the Snarky Self!

[Marianne Opilla]

Susana,

I am SO GLAD the Melatonin helped! We need our nighttime sleep so we can “participate in life” during the day.

[Marianne Opilla]

David,

GET THE QUAD BIKE!! You will experience the freedom of being outside and independent. I feel SO great when I can ride my TRI-bike.  It is a moment of pure pleasure!