Living Longer with ALS

[Kathy stitz]

Thanks for your post Amanda.  I was just diagnosed with ALS in June 2020.  However, I would be really interested in hearing from other ALS patients in regards to this question.   I have read that the average life expectancy after diagnosis is 2 to 5 years.  This has made me feel very depressed and hopeless.  Also not knowing how fast the condition will progress  causes a lot of anxiety and fear about the future.  It’s difficult to predict for individual patients how fast it will progress and how long they will live.

[Ginger]

Hi Kathy,

I know it’s had but you have to stay positive. I don’t think about it. I was diagnosed with Progressive Bulbar Palsy/ALS. in October 2020 but hard started loosing my speech a year before my diagnosed. I continue to live one day at a time. each day is different, but I make sure I have fun. I golf, walk my dogs, ride my bicycle and exercise everyday. My doctor requested that I have a peg tube put in my stomach while I was healthy so I did and it’s great. Try to stay active, let your friends help you and let them know how your feeling. Friends can be a big help.  I can say this because I have a great community of family and friends that look out after me. I can say I’m blessed.

Ginger, Loving life.

[Kathy stitz]

Thanks for your response Amanda.  I have read some of the articles that Dagmar has written. I am sorry that you have had family members with ALS. I go to a therapist once a week and my mother has talked to our local ALS association.  I am glad to have found support and encouragement from the participants on this forum.  This is really important for all of us who are struggling so much with this horrible condition.  I am also praying for a cure for all of us.  I believe I have a lot of courage and strength and these are things that have helped me to cope and to not give up.

[Anthony Serda]

I was diagnosed 08/2020, so fairly recent. I’m less concerned with living longer and more concerned with living better. I’ve been doing lots of research and trying to find stem cell studies and trials, but there doesn’t seem to be many out there. My doctor asked me to join a trial, but 1/3 of participants will get a placebo and I don’t think I have a year to waste while trying to fight this disease. Has anyone done commercial Stem Cell?

[Susan guarcello]

Anthony, Mayo Clinic has a stem cell study. No placebo

[Danielle Uskovic]

The median survival time from onset to death ranges from 20 to 48 months, but 10–20% of ALS patients have a survival longer than 10 years. Older age and bulbar onset are consistently reported to have a worse outcome.

 

From this study published https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3515205/

My number one advice is to forget about the disease. Keep on living. Acceptance is the key to happiness.

I have spoken to many pALS that have lived for more than 10 years. What I’ve found from my research is that they have a positive mindset, they eat fresh, organic foods, they do moderate exercise, they give back to our community by helping others and are spiritual.

[Kim]

I was diagnosed in June 2020 and started stem cell therapy in July 2020. I started with a 3 week treatment (1/week for stem cell injections over the three weeks), totally 120M cells. I am now receiving the ‘booster’ treatment of 40M cells. My plan is to get them 3/year. 20% are delivered IV and 80% IT, and is accompanied with vitamin and O2 therapy. I have no idea if it is working as I don’t know what my progression would be. At the moment, I started 1 1/2 years ago with left forefinger weakenss which has progressed to quite weak and the middle finger and thumb is also starting.

I am going to continue b/c at the very least it is amazing for my overall health. My father has been getting regular stems for 6 years. He’s 84 and operates like he’s 65. Does this reflect how it will affect ALS? Who knows, but I’m willing to try!

[Duane]

Unfortunately I have had ALS for about 14 years since the first major symptoms.  Danielle is correct, forget about it.  Put your mind on better things.  For me, I learn computer programming, but anything to focus on something else is good.  I do moderate stretching every morning in bed.  Eat well and keep your weight or increase it a bit.  Sleep well, and in case you have apnea, use a VPAP , or what they prescribe.  I am spiritual and that helps me put my life into a better perspective.  I eat well but not always organic.  I eat high protein food.  I use a few supplements, and drink 2 glucerna’s daily, I am not diabetic.  Don’t listen to the 2 to 5 years stuff, stay positive and as happy and healthy as you can.  My daily life has more than it’s share of difficulties but still I laugh a lot and don’t take anything too seriously.  Be calm.

[Dagmar]

I agree with Danielle and Duane. As someone who is marking her 10th year with ALS – – I look back and can offer this advice to those newly diagnosed:

– The internet is your friend and foe. Reading all the “ALS fact sheets” will make you think symptoms progress fast, we have no control and, life suddenly ends in 2-5 years. This is what fundraisers (and yes, the ALS Assoc.) uses to motivate people to dig deep and contribute $$$. Worst-case scenarios and shocking photos of end-stage pALS have become the public image of ALS. We new patients read that and gasp.

– Many other diseases (Parkinson’s, MS, cancer, etc.) have well-established “patient wellness” campaigns offering counseling, exercise, self-care, motivation, and more… ALS doesn’t. At least not 10 years ago when I was diagnosed. That was the reason I began my ALS Wellness Blog – – it was a no-brainer: ALS needed a cheerleader. Sooo, please turn your eyes away from all those fact sheets… they won’t “help” you. We help each other by sharing our stories, our tips, and supporting each other (like in this forum 🙂 ).

– Anxiety, worry, and stressing out (I know, easy for me to say) don’t help your body at all. Research on ALS patients has shown that symptoms slow down from: exercise, mindfulness, meditation, medication and, a positive mindset. If we can’t yet get rid of our symptoms, at least be proactive in slowing them down.

– Have a friend or family member help you process through the stages of grief and loss. Continue to find ways you can contribute to projects and give your life meaning. Accept suggestions to use assistive devices – – the devices will help you live longer (preventing falls, choking, etc).

I’ll admit that in my first year, I had all those awful images in my head. But, I, like Duane, am eating well, getting good sleep, exercising and, hugely busy with projects – – all 10 years later. 🙂

[Mike Leist]

Like many PALS, I was very physically active when I was diagnosed. I continued to be as long as I could, and kept workout journals.  I noticed the more active I was consistently, the slower the disease progression.  When I took time off for whatever reason, I lost strength more quickly than when I was healthy and took breaks from my routine. I don’t believe pushing yourself to failure, like most healthy athletes do, is good for those with ALS.  But doing whatever you want, with moderation and consistency, can help lessen the speed of decline.

[Dagmar]

I agree with you Mike – – my symptoms vary in intensity in response to my consistency in doing daily exercise.

Whenever I miss a session or skip due to a full day, I feel more stiff. Several days of no exercise, I seem to regress and have to re-learn certain movements. It feels like pre-ALS when I’d go a few days with no exercise – – only now, the bad effects of skipping are on overdrive.

This has proved to motivate me to always put my body’s needs first: never skip sessions, ever. I’ve even experienced improvements in strength, breathing, and mobility – – which motivates me even more!

[Duane]

While their appears to be small, incremental progress on the ALS research front, I am convinced there is little understanding of the basis for this disease.  I am also convinced that ALS with many people starts in their teens and progresses from there over decades.  That is why people in their 60’s experience it just when their muscle mass diminishes with age.  And, it may at least partially be initiated by a virus.

[Dagmar]

That is an interesting theory, Duane.

[Bill]

My symptoms started in excess of 5 years ago and I was formally diagnosed Jan 2018. My progression is very slow. I too have met quite a few pALS on line living well past the 2-5 year thing. Advice,  follow your doctor’s advice, eat well to maintain your weight, hydrate well and be sure to get adequate sleep. I believe a positive attitude is crucial. Despair likely will only accelerate things. Stay active but don’t push affected muscles too hard. Go to a good clinic. Educate yourself about ALS and ask questions. As a new pALS you will be bombarded by possibilities of supplements, exotic diet regimens and of course whether to take Riluzole and Radicava. Take your Doctor’s advice but educate yourself. Above all else, keep living your life and adapt as you go.

 

[Dagmar]

Wise words Bill. I agree with everything you said. 🙂

[Clementine]

Good evening to everybody from the Cotswolds in the UK.

I am a brand new member and unfortunately qualify as diagnosed with MND officially three weeks ago. I however had noticed ‘signs’ approximately 12 months ago which very slowly progressed to January this year, whereupon I had a flu virus, not sure if Covid or not However, after this time I noticed a somewhat more rapid increase in symptoms starting from my hand changing slight shape to Midsummer needing a stick to walk as my leg felt ‘heavy’. I won’t bore you with the details of the inadequacy of our NHS system in diagnosing this heinous disease But I am now At a point where I have left side paralysis, weakness and a pretty useless spastic left hand. My right side is currently functional and I feel grateful that my lungs and my speech have not yet been affected.

I have enjoyed And found comfort in reading everybody’s personal experiences on living with ALS and I concur that a positive outlook is imperative for a longer existence. I am now and always have been a believer that “you are what you think you are” and even though I feel out of control because we all know the out come for this disease is bleak whether it’s two years or 10 years, I personally feel that a positive mindset is imperative for longer life.

I do my best to be as healthy as possible as I always have enjoyed eating good food, always organic and try to focus on more fish than meat quite happily. I train a minimum of four times a week, specifically Pilates, Reforma tables which give me immediate relief, giving me immediate relief from aches and pains and flexibility. Trying to be positive and forget I am ill is a struggle As meeting with professors recently where I was told that 50% of patients die within the first two years, fact, is a concern but I will continue to fight to try and defy or at least not be one of those percentage.

It does fill me with great hope however when I read everyone’s account on here by saying they are 10 years down the line but may I ask what quality of life you have? are you are wheelchair-bound? still walking? As you see I am not as brave, as whilst I could cope with being wheelchair-bound I cannot cope with the idea of losing my liberty to care for myself, not being able to look after my personal needs. I am not that brave. This is what terrifies me the most losing the use of both hands will be my deciding factor. How people cope with this is beyond me, I admire so much….

 

 

 

[Dagmar]

Clementine, I am happy to share that my quality of life remains high.

I continue to walk (with the help of a rollator), talk (with a slightly lower and slower voice), eat all foods (but add a little thickening powder to my beverages) and, limit my activities to only the important, meaningful ones (ALS has helped me eliminate all the time-wasters I used to do).

So, even though I’ve obviously made concessions to my various symptoms… I’m holding the line and remaining at my plateau. Hopefully, you can find your way to do the same 🙂

I have photos of my current status at: https://alsandwellness.blogspot.com/2015/01/welcome.html

[Paul Tavano]

It has been over 11 years since my diagnosis. Hearing the words you have ALS and a 2-5 year prognosis with no real treatment was a shock to say the least. At first I shied away from letting people know I had ALS because as long as I could hide it I would. I also didn’t want to participate in ALS groups because I didn’t want to see what was in store for me in the future. When I did tell friends and family there reaction was how can we help. From their desire to help and our desire to fight this disease we created a nonprofit “We Will CURE ALS”. The purpose is to raise funds for ALS research. Our primary fundraiser is a charity golf tournament and we have donated over $800,000 towards ALS research.

The nonprofit has allowed us to feel like we fighting the disease and gave a way for those that wanted to help to help. We have met so many ALS families who have lost loved ones and who are still committed to find a way to help others. Our event has gone beyond just raising funds it has also raised spirits.

I agree that staying positive, staying active, eating right, laughing often and not dwelling on the future are all very important. I would add that fighting by getting involved with support groups, fundraisers, webinars, research studies is so important. It’s easy to feel sorry for our predicament but you can feel so much better by doing something, anything to help make a difference.

[Duane]

Clementine, it’s very difficult to diagnose ALS, and some people like the NHS a lot.

I am doing ok living with this disease in a chronic fashion for 14 years.  Sure I have my weaknesses and other issues, but I have from the start decided it would not let me stop living life.  I have made the necessary adjustments to be as safe as I can and I am continuously involved with projects in computer programming, which interests me and most importantly gives more purpose to my life;  keeps me thinking about other things, not just my weaknesses.  Hopefully, you will find your own ‘comfort zone’, as I have.

[Kathy stitz]

I think it is just difficult to have hope with this diagnosis.   10 to 20% of people with this live longer than 10 years but that is not a very high percentage.  Most people with this will not live for that long.  I know there are people who have and I am happy for them but this is not the reality for most people who are diagnosed with ALS.

[Duane]

Know one knows how long you will live, no doctors or scientists know.  So, why not give yourself the best chance possible even if you don’t succeed.  I am very well aware of the numbers and percentages.  There are various ‘forms’ of this disease  some which allow you to live longer.  Paul Tavano sums up in his last paragraph the best approach to this disease.  At least you tried hard to live.

[Kathy stitz]

Thanks everyone for your support and advice.  I was just diagnosed a few months ago and I admit I have not had a positive mindset about this so far.  I hope to be able to get to a point where I am not as depressed and stressed out about it so I can try to have a better quality of life.  I really enjoy helping other people and that is something that gives me a purpose in life.  Thanks again and best wishes.

[Bob Ives]

As an 80 year old pALS with symptoms starting 10 years ago and a definitive diagnosis 7 years ago, I agree with the comments made above.  Disciplined eating and exercising in moderation is invaluable to maintain weight, strength and balance.  I also ‘vest’ and nebulize to optimize pulmonary function.  I’ve always been a “glass half full” guy so maintaining a positive state of mind is easier for me than it is for some.  I’m still ambulatory with a rollator and my speech is starting to become a problem.  I’m very  careful not to fall down (again!) since balance is a key issue and the consequences of a fall can be catastrophic.  I’m fully retired, but engaged with family, friends and businesses so my days are full.  If you’re a veteran, make sure you check with the VA who have wonderful programs & support since ALS is a service related disease.  If not, there are support groups in many of the larger cities (Les Turner ALS Foundation in Chicago) that can really help since they can direct you to the best resources.  We all know the end-game of ALS, so our focus needs to be on delaying it as long as possible and on quality of life.  I’ll readily admit the early going was rough emotionally, but with faith and the support of family and friends I’m in a really good place!

[Ken Erickson]

My name is Ken Erickson and when I was 50 years old I was diagnosed with ALS February 27, 2017. My symptoms started late 2016 and a friend from my Job offered me a supplement he felt would help me. I started taking it before I got diagnosed and by 3 months after taking this supplement my symptoms slowed. At month 5 I started the second phase of the supplement. Now I was taking 2 tablets from Life Vantage call Protandium NRF1 and NRF2. The combination of these 2 supplements remove 75% of Free Radicals, Oxidative Stress and Inflammation in my body. By no means am I saying it will help everyone but I feel it has a great benefit of slowing progression. In 2019 the FDA approved a drug from Japan called Radicava which gets Free Radicals, Oxidative Stress and Inflammation out of the body.

[Dagmar]

Ken – – your supplements are interesting (although at a hefty price and no published research yet, as to it’s effect on ALS). You are correct that current medical thought connects ALS to the build-up of toxins (glutamate) in the body from oxidative stress and inflammation. Radicava and Riluzole are both prescribed to help remove these toxins.

But, I suggest we also try to reduce “producing” excess oxidative stress in the first place; which can come from our own emotions: anxiety, worry, depression, or feeling angry at the world. Good emotional well-being, exercise, mindfulness, and meditation have all had studies proving they help slow down symptom progression.

https://alsnewstoday.com/columns/2019/11/19/formula-wellness-simple/

 

[Ken Erickson]

Do you have ALS?

[Dagmar]

Yes, I was diagnosed in 2010.

[Kim]

Amanda

I go to Giostar in Mexico but they also have a clinic in Chicago. They are not by any means the only show in town but one that I like and trust. You can check around for better prices. It is not covered by insurance and it is not inexpensive. My first treatment was one day a week for three weeks and that was C$30,000. The booster which is one day of treatment is C$5900. You also have to factor in travel. It may be possible to get a letter from your neurologist stating that this treatment is not available for you in your city/country at which point you can perhaps write it off of your taxes. Hope this helps

[Dagmar]

Kim – – 30,000 for an unproven treatment? And have you had any symptom improvement?

I worry that this is just another “hope-in-a-bottle” bogus treatment. There is a reason it isn’t covered by insurance – – it is not supported by medical science to be effective for ALS.

[Duane]

I’ve been living with ALS for 14 years.  I once considered the DPS but came to realize it was not worth the risk and inconvenience. There are many bogus treatments available for serious or fatal diseases, and I have not used any of them.  There are always predators you shouldn’t encounter.

[Dagmar]

What is DPS? …perhaps I know it by another name?

 

[Duane]

DPS  is a diaphragm pacing system, more correctly termed a phrenic nerve stimulator, which sends electrical impulses to the phrenic nerve.

[Chuck Kroeger]

<p style=”text-align: center;”>I was diagnosed with ALS in may 2019 with onset of symptoms about 2 years ago.  I’ve be in a power wheelchair for about a year although I could walk about 20 steps up until maybe 6 weeks ago.   I was told to conserve my energy rather than exercise.  I had always been physically active and fit and was put on  a rigid physical program prior to diagnosis. it caused my strength to spiral down. I read where people do exercises and stretches but those are not options for me.  I’ve been on a trilogy for a year and a 1/2 pretty much full time and my hands are very weak with curled fingers that won’t straighten.I can’t hold a spoon  or fork.  I cannot raise my arms.  I do raise my legs a little to keep some flexibility there but that’s pretty much it.  It appears the disease varies tremendously between patients.</p>
<p style=”text-align: center;”>Depression. yes.  Tears. Yes.  But mostly frustration and I feel so sorry for my caregiver.  My faith keeps me sane as I continue to see my physical strength leave me week by week.    I take a hand full of supplements that are antioxidants thinking they may slow things down a bit.  Riluzole made me nauseous so I quit it.   just waiting to see what they come up with next.  But have decided I wont bankrupt my family to try something that hasn’t been proven.</p>

[Clementine]

Hi Chuck, reading your contribution stirred lots of emotion for me. I have had symptoms for a year, officially diagnosed six weeks ago. March this year I was running round the fields, now I struggle to walk to the bathroom. I too led a very active life prior to this heinous disease. I can relate with you with regards to limited movement, as I have the use of one hand luckily my right hand, as right-handed, my left hand is spastic. Up until four weeks ago I had some use of it but now I have none. I look at it and I think it looks so ugly and I am struggling with what the future holds, I cannot bear the thought of being in a wheelchair I’m sorry to say, as I cannot bear the thought been denied the right of privacy. I do not want an existence, I want to live my life for which of course is not possible, I wish to stay in control but for how long. I too tried Riluzole but lasted one week as actually made me feel like I was dying and I could hardly breathe so that was a no go. If it was not for my daughter I would be planning my exit more consciously even though I think about it daily.

[Janice]

Hello this is Jan from NC and I had 2cc of stem cells on October 24, 2020. In the past 3 years I’ve had prediabetes and no meds because my numbers were lower. I eat organic food and puree it because I’ve lost my chewing. In the past I took three different meds for acid reflux. After that, I lost my voice. I take many supplements especially for my bowels and some for ALS which I found on the internet. I walk when weather permits. I just got fitted with a MedPro breathing unit and I used it 4 times a day and will try to sleep with it.