What Does ALS Look Like to You?

One of the first questions I asked Marilyn Evans of ALS TDI was if ALS only strikes white people. We need all colors represented, as well. ❤️

The women in the picture looks like a part of "stage" photo, it is not about "certain ALS look.
Living with ALS, terminal illness, you can not be as you stated "Why can’t I be happy and healthy despite living with ALS". Healthy and ALS exclude each other.

My own positive role model is someone who avidly researches laboratory/clinical developments in the search for a cure for ALS, and who eagerly anticipates the next drug/infusion approval.

My sister got ALS for year now and she is completely dependant from us for everything cannot move hers arms, cannot eat alone etc... The picture do not reflect the real ALS effects on a patient with this illness .
We want her to be happy and gets the best of life but how
Even with our (family ) great care , sue is suffering every moment .

I find this article and author to be offensive and out of touch with reality. Clearly she has no personal experience with ALS. In my 20 years living with ALS, I have never seen these kinds of images. Rarely do we have the luxury of looking put together dressed in clothes that don't factor in how we are going to get on and off the toilet as well as accounting for equipment that often accompanies pALS, such as feeding tubes, bi-paps, vents, catheters, etc, not to mention the hair and make-up. Most of struggle to eat and sleep, can't exercise; what balanced-life pep talk bs. That being said one can still choose to be happy and not apathetic. I am living proof as are many others.

The first thing everyone says to me is, "Your husband looks so good" .
My husband was a healthy 59 year old man with outdoor hobbies and no history of any illnesses. ALS starts to look like what people expect when the limbs atrophy and mechanical assistance is needed, the power wheelchair, the BiPap machine, the specialized vehicle and adapted home. It is difficult to be out in public after a certain point so many people have never met a person with ALS. People have expressed to me that my husband should be out more "like (famous football player)" or "maybe he will survive for years like Stephen Hawking". They have no idea what this disease is like to live with everyday. We need awareness!

Unlike both women in the photo, my daughter-in-law is paralyzed from the neck down and cannot hold a coffee cup, gesture, hold her head up etc; she is in her 40's, diagnosed just over a year ago, and has not looked like those women in quite a while. In this sense that photo looks TOO happy-happy stock photo. My daughter-in-law smiles a lot as well as cries a lot but doesn't resemble this photo at all.

This article about what ALS looks like brings up my situation with ALS. I was diagnosed by two Neurologists and the VA in 2012. In April of 2017 I had a four minute examination at the VA which included removing my clothes. After the exam I was told he didn't think I have ALS. This was the first time for this Neurologist to examine me. Keep in mind I attended an ALS clinic for nearly five years at the VA then they decided to dump me. I am a complex case and now I fell into a state of depression and embarrassment that I found very difficult to cope with this change. I fell recently and my non VA Neurologist sent me for a MRI and I was told I have a very serious spinal compression and severe spinal stenosis at my C2-C3 level and I would be at high risk for Quadriplegia if I didn't have surgery. I went to see a Neurosurgeon at UTSW about the spinal issues and was told I have a MND and to see my Neurologist. Additionally with my current Shortness of Breath issues a surgery would be very dangerous for me with MND and restrictive lung disease. I saw a non VA pulmonary doctor and he advised me to not to have a surgery because it would be most likely lead to total ventilator care. Presently I have been on non invasive bipap with use while lying down because without it I stop breathing while sleeping. The point is even doctor's are not sure and noncommittal about ALS if you don't die within the 3-5 yr death sentence ALS generally hands out. Now since I have this spinal cord injury issue even my regular doctor thinks I don't have ALS now. I couldn't even get an appointment with VA for nine months. I emailed them to explain what is happening to me if not ALS and receive no responses back. I told my PCP at the VA but no answers from him. I am left with UTSW telling me I have MND but asking me to see my Neurologists that have now abandoned me to be in limbo about my diagnosis and what to do next. Are there other MND patients out there that are being abandoned by the VA etc non VA doctors after all this time. Keep in mind when I started this journey I weighed 205 lbs and I have managed to keep my weight between 167-172 lbs this past year. I have muscle atrophy, abnormal EMG studies and severe muscle weakness/atrophy in my arms and legs. The EMG findings have not worsened over time and because I have diabetes they say it probably is peripheral neuropathy. I use a cane, walker,and wheel chair for long distances of mobility. Just sharing the invisibility of MND can also be with doctors once you pass the death time frame of 2-5 yrs. Don't get me wrong I was really glad to hear the VA saying I don't have ALS but that only lasted a couple months until UTSW said I do have MND. My health is poor but feeling like no death yet has already transcended into guilt feelings of not dying and frustrations of unknowns without support for medical help. Do you think this happens often to ALS patients living longer than 3-5 yrs? I asked my doctor what he thought about Stephen Hawking and he said, "He doesn't have ALS" it is probably MS"? ALS can be invisible in many ways. I wish they would come up with some kind of positive test to determine diagnosis. sorry for such a long comment but I truly feel abandoned and I still don't know anymore about my health now. I pray this waffling doesn't happen often with MND disease. Thanks for listening.

You are absolutely correct when stating “looks too healthy to have ALS. Let me tell y’all that a positive outlook is so very much the most beneficial part of dealing with any disease and so very important with ALS. My wife is dealing with ALS and has been for 3 years now and I am her 24/7 caregiver husband. While we have our pity-party’s from time to time, we maintain a positive attitude which is so important for both the ALS person as well as the caregiver!

Dagmar - I am sorry you are receiving such negativity about a simple photo. I am much more interested in the content of your column than the illustration. As a caregiver for a PALS I completely appreciate the uplifting message and dose of humor you continually share. Please don't let a few negative people bring you down. Seeing your personality through your column, I have no doubt you will keep up the great work and possibly be inspired to do more!

I accept that dressing in your best clothes is difficult with ALS or MND as we call it in the UK. If I am casual with friends like that in the photo then I wear comfortable clothing but if I go out to a social event then I want to dress for the occasion. Just because we have a disability it doesn’t define how we appear. I believe I appear as a healthy person or so people tell me until I start talking or moving.

My husband died of ALS and I am offended by the photo. I cannot figure
out what physical limitations she has, as I have never heard of ALS affecting
people only from the waist down while maintaining the ability to balance a coffee cup, speak, smile and have excellent trunk and upper body control.

When we see our beloved husband, wife, fiancé, father, mother, sister, brother, daughter, son or friend battling this disease let's not be bitter towards attempts to gain support and awareness towards understanding and a cure. Not everyone can or should have to face this harsh story. Be kind to others and see the good work amidst our sadness.

I was scheduled for my first ALS clinic just weeks after I was told I have MND. I was terrified of going to the clinic, afraid of seeing the stereotypical ALS patients knowing that was my fate, I even considered canceling the appointment. The first person I saw was a lovely lady, very put together with hair and make-up done, walking in with the aid of a rollator. She approached me and we started talking, BTW she told me I didn't look like I have ALS and I returned it to her. I learned she has been living with ALS for over 8 years! Meeting her gave me a entirely different outlook on what living with ALS looks like. I left encouraged rather than depressed. When I saw the above picture I didn't think a thing of it........ALS does not have just one face!

To me happy and healthy has nothing to do with ALS. Rather it is hard to be happy while you lose everything in your life. I lost my job, financial independence, my friends, my family, cannot leave the house now. How sad. I keep asking is there a cure on the horizon or are we all doomed to die? This is sad. And the incidence of ALS is climbing. Why?

http://alsworldwide.org/assets/misc/ALS_treatment_-_Nature.pdf

Hello Roger, I'm from Portugal, and my husband has ALS for 3 years..and things are getting bad each day, Today we saw that was the last day that I can put him inside the car. his lack of strength..and mine as well. How you can support your wife without working? here in Portugal I need to work and pay to someone to care of him :-(...it's so sad...we are 50years old and so many things to do yet :-(

Dagmar Munn, The photo is fine. Everyone has their on opinion. My opinion on the Photo is, it doesn't matter what the two young ladies look like. Everyone with ALS looked healthy at the time of diagnosis. It's the non body movements that shows ALS not looks. People don't look healthy when their body is starting to die. I looked healthy when I was diagnosed having ALS. I read your column and didn't even pay attention to the photo.

It is silly to crticize the photograph or the author. Instead have compassion for the affected person having a moment of happiness.

My wife had already lost the ability to hold a cup when diagnksed six weeks ago. But she still has moments of happiness. I cherish them.

It is silly to crticize the photograph or the author. Instead have compassion for the affected person having a moment of happiness.

My wife had already lost the ability to hold a cup when diagnosed six weeks ago. But she still has moments of happiness. I cherish them.

Hy everyone, 8 years ago I noticed that I couldn't jump with two legs equally, then couldn't run, then walking became worse, after 1 year first foot drop, then 8 month later second foot drop,in2015 October vere given als diagnosis, then 2018 March pma diagnosis, and 2015 October flail legs sindrom, walking with walker, now they said we don't know what is it, they doing genetic tests to find out what is it, my simptoms begins very simmetricali, and proximali in two legs, difficulty go up stairs, low chair,, not jump. Somebody familiar this simptoms

I want to talk somebody, about my simptoms , after 8 years I still walk with walker,, have onli legs weaknese, tigh atrophy , and foot drop in two legs, no twitching, no crump, first they said als, then pma, then flail legs sindrom, now doing genetic test to find out what is it

Thank you Dagmar for answering , l like very much your optimizm, yor smile, I have very much depressin since 2015 when they diagnosed als, now in usc research center doctor Bedyin doing genetic testes to find out what diseases I have Dagmar . After 11years do you walking with walker, I have simptoms onli in legs, I am doing all works in home, sweping floor,,making dishes, loking after granddaughters, l am having some hard times, but doing my best

Dagmar I have questions after 11 years how ir your hands, or you have only legs simptoms like me, and do you have atrophy in your tigh muscles, I have tigh muscles atrophy that begins very simmetricali in two legs and I think weakneses and atrophy begins together

Dagmar you very positive person. I was wondering mayomo for legs , do you hear about that, my legs not have uper motor neuron sign, onli lower motor neuron sign, l have partial foot drop in two legs and little tighcmuscles atrophy, never us any braces, I read that hands ortosis for stroke, ms and other neuromuscular diseases,