August 30, 2019 at 10:31 am #13071AngieParticipant
I am curious to know if anyone follows a particular diet and supplement program, and do you feel it makes a difference in how you feel?
August 30, 2019 at 4:00 pm #13076
That’s a great question Angie – – I look forward to reading what others are doing.
As for me: At the time I was diagnosed, I was an 11-year vegetarian. My doctor said I needed more protein…and since I couldn’t imagine eating more chickpeas and soy; I immediately became a meat eater! Have been for 9 years now. Healthy foods, balanced diet but no restrictions; meaning I occasionally have pizza or a cheeseburger. Today for example, I had a peanut butter and jelly sandwich with iced tea.
Also, my personal philosophy regarding supplements is: (unless you’re medically deficient in some) we don’t need them. If you eat healthy, your body gets all the nutrients it needs. So, I don’t take vitamins, etc. Just last year however, I began taking Theracurmin, because it is antioxidant, anti-inflammatory (I have creaky knees) and a memory enhancer (for old folks like me 🙂 ). Seems to be working so far!
Overall, I feel fine. Have energy and do sleep well.
Angie – – what do you do?
October 13, 2019 at 4:25 pm #13469Dulea OanaParticipant
I’m taking Nuedexta, Quinine sulfate and Metylcobalamyne.
I don’ t take Riluzol because of the side effects.
October 13, 2019 at 4:28 pm #13472
Thank you for sharing that Dulea. A question for you… what kind of side effects did you have with Riluzole?
October 15, 2019 at 12:52 pm #13491Eric BarnettParticipant
I too quit taking Riluzole. Lots of pain between chest and belly button area. Tried 1st time for 2 months. Took a break for 3 months then went back on for about 4 months. Pain wasn’t worth it.
October 15, 2019 at 4:28 pm #13499
Everyone reacts a little differently and has different experiences – – especially with ALS.
I’ve been taking Riluzole daily for the past 9 years with no ill effects & always good lab reports.
October 15, 2019 at 1:13 pm #13495Roxanne KusskeParticipant
My husband took the Riluzole for about 2 weeks, and was constantly tired and nauseous, so we decided it wasn’t worth that, to only live an extra couple months, after the disease is in it’s late stages.
October 15, 2019 at 4:25 pm #13498
Actually, everything we patients do/eat/take to help slow our ALS symptoms are done in the hope we can extend our lives.
I’m not promoting Riluzole, but do want to clear up a the common confusion about how this drug works:
Riluzole helps eliminate glutamate (metabolic waste) from the brain. Build-up of glutamate has been linked with ALS and loss of the body’s motor neurons. According to the 10 years of studies of Riluzole, it extends quality of life 3-months to several years longer than compared to not taking it. The company defines loss of “quality of life” when the patient needs a tracheotomy in order to breathe aka: late stage of ALS (note: life does go on following this surgery).
So, Riluzole is said to “stop working” when it can’t keep up with the amount of glutamate produced by the brain – – that is usually about the time the patient needs a tracheotomy in order to continue breathing. Patients stop taking Riluzole, but can live months or years longer.
October 26, 2019 at 8:09 pm #13606Chuck KroegerParticipant
I had lost 50 pounds in 13 months so the dietitian was quite concerned. I had been a fit 185 and dropped to 133. I was encouraged to eat a high caloric/high protein diet including Boost or Ensure and chocolate milkshakes. I continue to take vitamins and supplement, assuming excess will flush on through. I have gained 15 pounds in past 5 months, but my back and chest are still bony.
October 27, 2019 at 11:19 am #13608FatemaParticipant
This place is very useful and full of knowledge.
My father is suffering from ALS at the moment he is having riluzole and edaravone injections. I would like some suggestions from you all about his diet. What are the best things to give him as he has become very weak. Any diet chart or plan that can guide me please it would be very helpful.
October 27, 2019 at 12:17 pm #13611
Fatema – – I have been living with ALS for 9 years and can share what I follow. Mornings, I have a tall glass of fruit smoothie (Ensure, Instant Breakfast power, fresh banana, strawberries and tropical fruit), plus a cup of coffee! For the rest of the day, I eat healthy, wholesome foods which would fall into a type of Mediterranean diet. I only avoid junk foods like donuts, chips and colas. My only medication is Riluzole.
So far, I have energy, feel good – – am still walking (with rollator), talking and eating. I find it best to not stress out about food. Eat healthy, but don’t get extreme.
November 2, 2019 at 8:01 pm #13669Chuck KroegerParticipant
besides the routine supplements, I have increased the amount of dark chocolate and almonds that I eat (both are antioxidants), and am consuming more calories and more protein. (I had lost 50 pounds) I have always eaten healthy but have not avoided occasional fries and chips. I was officially diagnosed in May 2019 but symptoms started Oct 2018. I continue to get weaker and now spend more time in wheelchair to conserve energy. I do take curcurmin twice daily . like others, hoping to hang on while waiting for a cure or med to halt the progression.
October 27, 2019 at 4:45 pm #13612FatemaParticipant
Thank you 😊
October 29, 2019 at 11:04 am #13626Christine MorettiParticipant
Hi Dagmar, thank you for your post and for all the interesting comments from fellow readers of ALS News Today.
In January 2016, I was diagnosed with PLS. My drug regimen includes Riluzole and Radicava infusions. In addition, I take baclofen for spasms and gapabentin for neuropathy. I also have a meningioma brain tumor which causes seizures so I take the generic form of Keppra.
As to supplements, my doctor recommended CoQ10, 200 mg l, 3x a day. Since I had a -4 vitamin result a year or so prior to DX, I also take 5,000-6,000 units a day of vitamin D.
My diet is loosely based on Paleo, but I do cheat on a Friday and Saturday night and enjoy sweet treats and some carbs. Sadly, I’ve never been able to do a successful sugar detox.
I am thankful my progression has been slow and will continue to fight this disease in anyway I can
October 29, 2019 at 11:53 am #13631
Hello Christine, I am happy that you are experiencing slow progression.. and have found a regimen that works for you. It’s always an extra challenge when dealing with an additional health issue. Keep at it — and wishing you continued “slowness” 😉 😉
October 29, 2019 at 11:59 am #13630Terri S. MieyalParticipant
A pure and safe vitamin and supplements brand with no taste and able to be mixed with a liquid to swallow….pills are no longer an option for me right now. Thank you!
October 29, 2019 at 3:26 pm #13634Christine MorettiParticipant
Thank you, Dagmar. Sending all best wishes to you — and everyone here. 😊
October 29, 2019 at 6:33 pm #13638Diana BellandParticipant
I was diagnosed in March, 2019. My neurologists prescribed Riluzole and several supplements: vitamins E and C, alpha lipoic acid, selenium and creatine monohydrate. I take the supplements every day, including vitamin D, and I add the creatine to breakfast and lunch each day. I also take a magnesium tablet once a day and I believe that may be why I very rarely experience muscle cramping or fasciculations. Three months ago, I began taking Theracurmin, and I’ve contacted Dr. Richard Bedlack to express my interest in participating in his upcoming Theracurmin trial.
I’ve adhered to the Mediterranean diet for many years, eating fish, legumes, goat cheese, yogurt, cottage cheese, and nuts as primary sources of protein, but no red meat. I included a large variety of colorful vegetables, including sweet potatoes. Since my diagnosis, I’ve continued with the basic diet I had been following but I now try to eat salmon three times a week, chicken a couple of times a week, and I do now have an occasional hamburger made from lean ground beef. I eat either a bowl of oatmeal loaded with blueberries, blackberries, strawberries and walnuts or an omelet for breakfast, and I try to have a huge bowl of salad with leafy greens like kale and spinach with a light dressing of olive oil once a day.
Initially, I had trouble keeping weight on so I began drinking Boost several times a day between meals and to supplement meals to be sure I was getting enough protein. I always make sure to drink at least one Boost after each workout at the Y. I’ve gained weight and am keeping it on. To satisfy my sweet tooth, I sometimes have trail mix with nuts, raisins, candied fruit and M&Ms.
I’m not really sure if the supplements I’m taking are making a difference in the way I feel, but I like to think they may be helping perhaps to slow progression. Although I’ve had to give up many of my former activities, I can still walk with a rollator, and I do have the energy to exercise every day, to get out and enjoy activities with friends and to travel.
Thanks for your great question, Angie. I was very interested to read what other Forum members are doing, and I’m looking forward to reading more comments.
October 29, 2019 at 7:22 pm #13639HenryParticipant
Unfortunately it is really hard to say if some food or supplement has positive impact on someones ALS progression. Most studies are mono-therapy studies and produce no results over 6 or 12 months. PALS would have to keep a symptom diary to be able to notice any major effect. ALS is a heterogeneous syndrome with many different causes, subsystems and comorbidities. Each pALS must discover themselves what works for them, based on lab tests, patient history, symptoms and records. This job is very complex and very hard to achieve without a nutritionist specialized in ALS. Most PALS take or eat something that they have heard may help, but discontinue since they dont understand their own pathological biochemistry, nor the biochemistry of the food or agent.
October 30, 2019 at 10:16 am #13646Diana BellandParticipant
I was very interested to read on your profile that you are a medical professional and “Nutritional Consultant with emphasis on ALS and 20 years experience,” and also that you are writing a book about nutrition and ALS.
I agree that nutrition for pALS can be somewhat of a process of trial and error, but I am curious to know if, based on your experience of working with pALS for twenty years, you may have anecdotal evidence that supports particular diets and/or supplements for slowing progression in ALS.
October 31, 2019 at 3:09 pm #13660Douglas K PowellParticipant
Hi- I would like to add my two cents regarding supplements. While I take many supplements (I intend to eliminate many) I want to bring to your attention two supplements which seem to be getting a lot of attention.
TUDCA-has been recommended to me by 2 neurologist and the ALS Therapy Development Institute. TUDCA is currently part of a clinical trial in phase 3.
TUDCA dosage: Work up to 1000 mg per day. Start at 250 mg per day for the first week and increase by 250 mg every week until reaching 1000 mg per day.
Another supplement worth considering is Curcumin (Turmeric). This is also being investigated by Dr. Bedlack of the Duke ALS Clinic and the ALS Reversals website. I’m not sure what the recommended dosage is, but I am taking 950 mg per day.
November 1, 2019 at 11:41 am #13663
I believe the dosage that Dr. Bedlack will be using in his study is: 600mg/day of Theracurmin, “which provides 180mg/day of curcurmin. This is the brand he will be using: https://www.integrativepro.com/Products/Metabolic/Theracurmin-HP.
November 3, 2019 at 7:35 am #13671Douglas K PowellParticipant
My neurologists did not provide me with a recommended brand so I purchased the brand Nutricost TUDCA do to prices- I buy 60 capsules or 250 mg each for about $30 on Amazon. This provides me with a months supply assuming 1000 mg per day.
If you find a better price – please let me know!
November 6, 2019 at 3:36 pm #13700OwenParticipant
Hi all- I’m a new member, and thought I would piggyback off of this conversation. My wife was diagnosed with ALS recently, and I have been conducting research in a number of areas to try and wrap my head around the massive amount of information on ALS. One area I was looking into was supplements, and whether or not there is anything promising in this area. Below is a dump of research I’ve done on supplements. I’d be interested in hearing from people here 1) if anything on this list has been recommended to you by an ALS-focused neurologist, 2) if anyone has any personal experience with anything on this list and could comment on perceived benefits and side effects, and 3) if anyone has guidance from doctors or research studies on dosing levels. Thanks!
<u>Vitamins and supplements</u>
- Good overall summary: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712627/
- Good overall summary of metabolic treatments: https://www.frontiersin.org/articles/10.3389/fnins.2016.00611/full
- Big list of ALS supplements: https://alstuttu.org/wiki/index.php?title=Information_on_nutritional_supplements_people_with_ALS_have_been_taking
- Human studies with promising results:
- Vitamin D & E: https://alsworldwide.org/care-and-support/article/supplements-and-vitamins
- Methylcobalamin (Vitamin B12) – high dose of 25-50mg: http://informahealthcare.com/doi/pdfplus/10.3109/21678421.2015.1070574
- L-carnitine: https://www.ncbi.nlm.nih.gov/pubmed/23421600
- L-Serine: https://brainchemistrylabs.org/lserine
- Tauroursodeoxycholic acid (TUDCA): https://alsnewstoday.com/tudca-tauroursodeoxycholic-acid/
- Mouse models with promising results
- Ginseng: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659610/
- Extract of ginkgo biloba (EGb761): https://link.springer.com/article/10.1385/JMN:17:1:89
- Catechin in green tea (Epigallocatechin gallate): https://www.ncbi.nlm.nih.gov/pubmed/16356650; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3585739/
- Alpha-Lipoic acid – specifically R(+)Alpha lipoic acid: https://www.ncbi.nlm.nih.gov/pubmed/29842900
- Nicotinamide mononucleotide (NMN): https://alsnewstoday.com/2018/01/19/study-shows-symptoms-of-mice-with-als-improve-after-they-are-treated-with-enzyme/
- Ashwagandha (SOD 1 variant only): https://www.ncbi.nlm.nih.gov/pubmed/30134145
- Deanna protocol: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4111621/; http://informahealthcare.com/doi/pdf/10.3109/21678421.2013.788405
- Cannabinoids: https://www.researchgate.net/publication/329447341_Effects_of_cannabinoids_in_Amyotrophic_Lateral_Sclerosis_ALS_murine_models_A_systematic_review_and_meta-analysis
- Mixed (but not necessarily negative) results
- Protandim – potentially sketchy but may have some promise: http://www.tandfonline.com/doi/pdf/10.3109/21678421.2015.1088707
- Theracurcumin – oral: https://www.tandfonline.com/doi/pdf/10.1080/21678421.2018.1440738?needAccess=true
November 25, 2019 at 12:17 pm #13881AnonymousInactive
It seems that there is a never-ending list of supplements one could consider taking, but there continues to be no or little proof that these substances really make a difference with ALS. Rather than wasting money on unproven stuff, I just take what suits me and has at least some beneficial effect on my body. To begin with, when I wake in bed in the morning, I do stretches. Knee to chest 6x each holding for 10 seconds for the first 3. Then, I do circular movements with my arms 6x each. Then I resume knee to chest holding each for 20 to 30 seconds, resting for a minute between each. My body from waist down is weak, and while I have good upper torso strength I am unable to lift myself off of the floor. All these maneuvers are therapeutic. So far as supplements, I take an adult multi-vitamin, D3 2000IU, a separate B complex, zinc gluconate 25mg, garlic extract 1000mg equivalent, fish oil 1200mg-360mg active Omega-3, Bilberry Fruit extract 1000mg x 1 or 2 daily.
November 25, 2019 at 3:06 pm #13882
Bravo Walter, for listening to your body and giving it what it wants 🙂 Cheers too, for your daily morning stretches! Keep it up 🙂
January 2, 2020 at 10:37 am #14134GideonParticipant
2 a day for a. she start in 2017 taking 250 mg one a day .
March 4, 2020 at 5:21 pm #14722Gail GarfieldParticipant
Neurologist suggested taking 500 Circumin daily. Also taking omegas, D, E, Magnesiym but finding it more difficult to swallow the big pills. Who knows if any of these supplements help buy hey, why not. Some days I just skip everything but the curcumin.
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