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    • #12115
      Diana Belland
      Participant

      I visit the site PatientsLikeMe frequently and came across a discussion of RCH4.  https://rch4als.com/

      Some patients claimed that it had slowed their progression dramatically.   Can anyone supply any information on RCH4 and are any Forum members taking it?

      Thank you!

    • #12117
      Dagmar
      Keymaster

      I’ll have to read more about it. So far, all I know is that it is an off-label/not-yet-approved drug that is injected directly into the muscle. hmmm…will add more later after a little research.

      Seems that there is a lot of controversy about the drug; and no published research – – only self reported results or company provided research. Since the makers do not state the exact mechanism of the drug (how it works in the body), it’s hard to tell what the efficacy is.

    • #12125

      There are several (many?) people that tell on Internet that RCH-4 slowed the progression for them, but this kind of statement does not mean much. How to be sure if their ALS would have progress quicker without RC4? We have no good way to measure ALS progression and too often the ALS diagnostic is a catch all “you have some disease involving motor neurons“.

      Apart the RCH-4 controversy, there is an incredibly high number of drugs that were patented to mitigate some aspect of ALS. Many are legal traps.

      Filling a patent is not something companies do lightly, as it costs a lot of money. Usually they fill a patent after human trials because at that time they know it is a safe bet. Some patents are dropped afterward because the company did not pay the annual patent fee, often because the inventor left the company and nobody wanted to take care of her/his work load, or the company was bought by a competitor with different goals, etc. RCH4 might possibly be one of such case.

      Some ALS patents are fascinating such as this one about regrowing neurons in the CNS:

      There was a scientific article in 2014 that was heavily cited, but the patent was filled only four years later, so probably they have some confidence in their findings.

       

    • #12136
      Dagmar
      Keymaster

      Thank you Jean-Pierre! Your comment is very helpful towards understanding this complicated process.

    • #12223
      WeirdTim
      Participant

      Started on RCH4 in April of last year after being diagnosed in April of 2017.  Like many of you, I read about it for months and then contacted many who were using it via private message on forums. Then, I went to http://www.als-new-drug.com and applied for it.  My neurologist approved me to use it after I provided information from the RCH4 Research Charity.

      I have never been charged a penny for it. I do a injection twice a week into a muscle. My progression has decreased by almost 80% in the last year compared to the year prior. No side effects.

      The RCH4 Research Charity chose to take a different approach in trying to get the drug to market. Instead of waiting for years to collect clinical efficacy and safety data, they instead have the drug away to tho s of us who requested it with a confirmed ALS diagnosis.  This has allowed them to receive a good amount of data in a very short time period.  The drug is ready to see a Phase II/III trials.  The drug is patented.

      There is a non disclosure agreement we RCH4 Patients signed so we cannot disclose some information. This is for a few reasons, none of which are malicious. One of the big reasons the exact MOA or exact chemical composition is not provided is to not encourage counterfeit versions.  In fact ALS Worldwide a few years ago tried to sell counterfeit RCH4 but was served with cease and desist orders by the RCH4 Research Charity.

      The RCH4 Research Charity has been nothing but professional, compassionate and shared openly a wealth of information.  We need to embrace this treatment as I know several whose progression has ceased for several years now.

    • #12296
      WeirdTim
      Participant

      This helps explain how legitimate the self reporting protocol those of us using RCH4 truly is.

      https://rch4als.com/self-reporting-accuracy

       

    • #12311
      Tomasz Boski
      Participant

      As AlS is a poorly defined group of diseases the efficacy of RCH4 varies from nil to stopping totally the progression . It is verified by comparing the extrapolated pre-treatment trend  with the progression trend after the treatment initiation. In my case the deceleration is about 60-50%.

    • #12309
      Marlon + Ness
      Participant

      Hi there,

      My wife has been on RCH4 since Feb 2016 and we believe that it has halted her progression. I see there is a bit of interest on the forum here so if you have any questions let me know. My wife’s story is here if you want to read about it https://rch4als.com/our-stories/f/vanessa%E2%80%99s-story

      The reason we think RCH4 is having an affect is because my wife is one of three medically identical triplets. All diagnosed with familiar SOD1 thr114lr varient. Her two sisters have already died and went within 18 months of first symptoms. Their geneticist proclaimed that Vanessa will follow a similar timeline. Vanessa (Ness) is still walking around and functioning nearly normal (just a bit slower and tires easily) nearly 3.5 years later. If anyone wants to talk to us, send a message or ask away about our experience.

      Marlon

      • #12314

        Hi Marlon,

        Just nitpicking if you pardon me:

        You tell that Vanessa has SOD1 thr114lr

        On the RCH-4 web site, Vanessa tells she has SOD1 Lie114tr

        If I do not make any mistake, there is no amino acid named tr, there is however trp (tryptophan), there is as well no amino acid named Lie, but there are Ile (Isoleucine) and Leu (Leucine).

        However I would bet that Vanessa has SOD1, isoform P00441 and point mutation Ile114Thr, which means that on the SOD1 gene, in the P00441 isoform, the Isoleucine at position 144 has been replaced by Threonine.

        More information here and here.

        (edit: I just saw that the correct value is on the chart on your other post)

        • This reply was modified 1 year, 2 months ago by Jean-Pierre Le Rouzic. Reason: just saw that the correct value is on the chart
    • #12310
      Marlon + Ness
      Participant

      Here is Nessy’s ALFFR-S chart for the last 3 years with her sisters and mothers timelines on as well, which shows a good comparison between her and her sisters.

      [img]https://i.ibb.co/8MvGgZM/Nessy-June-19.png[/img]

    • #12316
      Marlon + Ness
      Participant

      Jean-Piere,

      You are correct, my memory let me done. I just looked up the actual gene test and it is  p.lle114Thr. I’ll try and put the gene test on here, but have not worked out how to attach pictures yet

      Marlon

    • #13149
      DAVID
      Participant

      Hello

      Are the components of RCH-4 advertised anywhere ? Does anyone know whether any lab have or has plans to conduct such investigation ?

      Thank you

    • #13160
      Dagmar
      Keymaster

      Thank you for the link Karl.

      Waaay down on the page I finally found a statement that RCH-4 “targets a defect in the immune system.” So, this answers my question on how does it work/affect ALS.

      Here are a couple more questions for you:

      1. Why did you stop Riluzole? Do the 2 drugs interfere with each other? What were you expecting Riluzole to “do” – – that you didn’t observe? Since Riluzole removes excess glutamate from the brain… how did you ascertain this was not happening?

      2. I’m not a promoter of Riluzole, but wonder why not take medications that help address the varied causes of motor-neuron death? Meds that address: amino acid toxicity, oxidative stress, calcium cytotoxicity, and neuroinflammation. Why not get the best result from a  multi-prong approach.

      3. Lastly, I am concerned that this site makes questionable statements. It recommends “no exercise” for ALS/MND patients. Exercise has been proven to be beneficial – – and does not “cause muscle loss.” Rather, it helps maintain muscle tone, neural movement memory and lymph drainage. It also states that nutritionists do not understand ALS – – rather, those associated with reputable ALS Clinics do.

      We are all looking for relief, answers and… a cure. Best we still do due diligence when considering options and information being offered to us.

    • #13181
      Tomasz Boski
      Participant

      Dear Dagmar,

      I have a similar experience as Karl. Riluzole completely useless, without any benefit. It may eliminate all glutamate but if does not stop/decelerate progression it is wasting of money.

    • #13182
      Dagmar
      Keymaster

      Tomasz – – It’s very hard for me to label any generally accepted treatment for ALS as “useless.” You may have a unique sensitivity to know whether you are progressing fast or slow. For most of us, the rate of our progression is difficult to ascertain – – or attribute to one particular therapy or treatment. At this point in time, there is no one treatment that stops/decelerates progression. We pALS have to find what works best for our own body and what we “believe” is working to slow our ALS.

      Research is emerging that there is a combination of factors causing motor neuron death: oxidative stress, glutamate toxicity and immune reactors. So, a combination of medications/treatments seems the best logical approach.

      In addition, to add to the mix of unkowns about ALS, is the recent research showing that having good emotional well-being is linked to slower progression. So…. smiling is still the cheapest and easiest treatment yet! 😉

      https://alsnewstoday.com/2019/09/03/smiling-contentment-happiness/

    • #13188
      Tomasz Boski
      Participant

      Dear Dagmar,

      Maybe riluzole is effective for one of 25 variants of als/mnd. Not my case. If one is trained to carry on quantitative observations then plotting the progresion trend is easy. In my case Riluzole intake did not change the slope of the line.

      I agree that laughing is great therapy. I practice it every day.

    • #13308
      Steve Mundt
      Participant

      Hello,

      My mother has been using RCH4 for 3 years now and is doing quite well!! She has had no side effects at all. This charity has been very supportive and we’ve never been charged
      for RCH4. Below I have posted mom’s latest score sheet.

    • #13309
      Steve Mundt
      Participant
    • #13434
      WeirdTim
      Participant

      From personal experience before and during RCH4, stress of any kind whether physical or emotional or mental are bad for us. A lot of us have trouble maintaining temperature of our body which causes stress. My wife helps me stretch several times a week but nothing to build or maintain muscle.

    • #13448
      Dagmar
      Keymaster

      WierdTim — yes, emotional and physical stress should be avoided. But I don’t see therapeutic exercise as “stressful.” Done correctly, it helps keep the body’s internal organs healthy, the existing working muscles healthy and contributes to overall emotional well-being.

      I too experienced being sensitive to cooler temperatures during my first 3 years with ALS. But since following a daily program of gentle exercise and regaining muscle tone – – I no longer feel cold.

      So, assisted stretching every 48-72 hours is the only movement your body gets or does?

    • #13484
      WeirdTim
      Participant

      What I’ve done all my life is stretching without trying to maintain or build muscles. I was diagnosed with psoriatic arthritis at age 7.

    • #13485
      Dagmar
      Keymaster

      That is interesting – – do you still experience the psoriasis? And if I may ask, at what age were you diagnosed with ALS? Do you feel that there is a connection between the two?

    • #13496
      WeirdTim
      Participant

      Still have psoriatic arthritis and I was not by a car with ALS symptoms within one month at 41. I also have another autoimmune disease. It causes pigment loss in my skin.

    • #13505
      Tomasz Boski
      Participant

      autoimmune conditions are very common among pals. ALS itself, all indicates, is an autoimmune condition. Myself I have psoriasis, pollen allergy and gluten sensible bowel.

      PHYSICAL EXERCISE  is very beneficial but in excess is very harmful (my own experience). What is an excess varies from person to person and depends on your state.

    • #13511
      Dagmar
      Keymaster

      On that I can agree with you Tomask: “What is an excess varies from person to person and depends on your state.”

    • #13795
      Steve Mundt
      Participant

      Its been a couple months since I have posted, my mom is still doing very well on RCH4!! No side effects after 3 years now on RCH4, great news. The one thing I don’t understand is why are people still trying to destroy this charity and RCH4, it works well so instead of bashing this group why not help us get this to the market so all of the pals can have access to this drug!!!!!

    • #13796
      Diana Belland
      Participant

      The ALSUntangled Group evaluated RCH4 and published a paper in the journal of Amyotrophic Lateral Sclerosis and Frontotemporal Dementia, October 10, 2019.

      https://www.tandfonline.com/doi/full/10.1080/21678421.2019.1675282

      This article provides insight into the question of why RCH4 has not gained FDA approval and is not available on the market.

      If you have data showing that RCH4 has worked well to slow your mother’s progression or even restore strength and facility, you might want to consider sharing that data with Dr. Richard Bedlack, Duke ALS Clinic.

    • #13799
      Tomasz Boski
      Participant

      This review/article is methodologically flawed and based on completely insufficient data which Bedlack received from  the 3rd party. It reads like more like act of personal vengeance. After labelling rch4 as SCAM , attempted manipulation of public voting in ALSu ranking list, it is another attempt to bury it instead of promoting a fast, fair and scientifically sound trial.

       

    • #13803
      Diana Belland
      Participant

      In respectful reply to Steve and Tomasz, it appears to me that the group of neurologists who make up the reviewers of ALSUntangled have set out clear criteria for standard objective evaluation of ALS treatment protocols.   In addition, the names of all neurologists belonging to the review group are included at the end of each review.   An interested reader can look up any name on the list to find the credentials of that reviewer.

      By contrast the RCH4 website does not list the names or location of the developers of the drug:  “The RCH4 Research Charity (http://www.als-new-drug.com), is an informal charitable organization of retired doctors and scientists with lifetimes of experience in membrane osmosis and immunity research. ”

      I searched for the names of the “retired doctors and scientists” on the web but was unable to find them.  The RCH4 site mentions that funding is needed for Phase II and III trials, but does not mention when or where Phase I was conducted, the location of the trial or the results.

      The site also claims that negative reviews from ALSUntangled caused the funding for the charity “to collapse.”   Why,  if there were sufficient, credible data from pALS using RCH4 available to the funders for their review, would they have withdrawn their support?    I note, also, that PLM lists 27 patients who have listed RCH4 as highly or moderately effective.  Was this data, which appears worthy of close review, analyzed by the “retired doctors and scientists” and made available to the funders of the charity?

      I am glad to hear that Tomasz feels that RCH4 has helped him and that Steve feels it has helped his mother.  Perhaps you may wish to have your respective neurologists contact Dr. Bedlack with specific data/evidence indicating that RCH4 has been a significant factor in slowing progression.

      I wish you continued good results with RCH4.

       

       

    • #13817
      Dagmar
      Keymaster

      I agree with Diana: why demand Dr. Bedlack to conduct a trial, when the makers of RCH-4 haven’t done any themselves.

      Tomasz’s most recent comment does not read like something that comes from a university professor.

    • #13822
      Tomasz Boski
      Participant

      Good morningDagmar,

      I do not know what is your profession, I know however  that through 4 decades of my research career I reviewed and refused  tens of papers for flawed methodology. I never saw a scientific paper  that discusses other topics (like in review 51 by ALS untangled party) but experimental data, their discussion and conclusions. Several of my manuscripts were refused for the insufficient evidence to support conclusions and it was perfectly a part of the research routine. Please be so kind and don’t remind me what ethical behavior of a academic researcher should be . Thank you for maintaining your impartiality.

      Karl – thank you for your friendly remarks.

    • #13823
      Owen
      Participant

      In addition to what’s in the ALSUntangled review, here is what makes me skeptical about RCH4: if you’re developing a treatment for ALS, you’re either doing it to make money, or you’re doing it because you’re passionate about solving ALS (or some combination of the two). In either case, your objective is to get your treatment in the hands of as many doctors as possible so they can prescribe it to their patients. The way you do that is through clinical trials, peer-reviewed journal publications, and ultimately, FDA/regulatory approval. They claim they don’t have the funding to conduct clinical trials-which is plausible-but I find it exceedingly hard to believe that the medical community as a whole would choose not to investigate further if there was even a slim chance RCH4 is effective.

      • #13826
        Dagmar
        Keymaster

        Tomasz,

        I sincerely apologize for my remark; it was not made or meant as a critique of you or your profession, but a weak attempt on my part at reigning in the current discussion — to bring the focus back to comments that are of help to our members and/or shares information based on facts.

        Let’s agree to disagree on “why” RCH-4 is not receiving support from established ALS organizations.

        Let’s all agree to return the discussion to patient experiences with RCH-4.

        Thank you.

      • #13835
        Amanda
        Keymaster

        @Owen. I looked at the various websites mentioned in some of the posts,  and I agree with your comments. I believe that if there was any real scientific evidence that one of the research companies would be willing to make financial and time investments to further research and trials. I think that the professionals in the medical field, specifically ones focusing on ALS, will continue to seek out effective treatments and help pALS and others steer clear protocols that are not supported by data and research.

        • This reply was modified 8 months, 4 weeks ago by Amanda.
    • #13845
      WeirdTim
      Participant

      Also, we as PALS need to realize that what is good for one of us is not good for the other. This applies to exercise,  food, supplements and even medication. To judge a fellow PALS for what works from their experiences but doesn’t line up with your own regiment is short sided and not helping any of us.

      For me, I eat 2,000 to 4,000 calories daily and do nothing that could be considered exercise. And….since April 2018 when I started RCH4 I’ve maintained weight just great.

      We cannot continue to purposely discredit each other. We need to support each other.

      It’s not like someone who has no connection to ALS is talking up RCH4, it’s people diagnosed with ALS.  This is an important point.

    • #13844
      WeirdTim
      Participant

      Please be aware even before I started on RCH4, any exertion I did that could remotely be labeled as exercise caused me progression. Know of several other PALS with the same issue. Now, my neurologist agrees and the only physical activity I do is stretching with my wife’s assistance.

      If I were to tell another PALS on what not to do, exercise is one of those things as it is safe to tell PALS to not exert themselves using exercise,  it is NOT safe to tell PALS to exercise.

      Concerning the ALSU review of RCH4, I feel it was done to remove RCH4 from the vote on ALSU. Proof is the lack of details. After reviewing several other reviews from ALSU, NOT A SINGLE ONE closely resembles the RCH4 as far as lack of details. In fact there are several treatments still allowed to be voted on because ALSU doesnt have details. The RCH4 review was done by ALSU to remove RCH4 from the voting list, very fraudulent and makes us question the accuracy of their other reviews.

      Please read the RCH4 rebuttal here:

      https://als-new-drug.com/alsuntangled-review

       

      Moderators I ask you to keep an open mind and listen to those of us using RCH4.  Almost every forum has removed us and silenced us for simply providing our personal accounts. In fact we want nothing more than for all PALS to be using RCH4 because we personally know it works as an effective treatment,  safely.

    • #13867
      Diana Belland
      Participant

      Since I started the thread on RCH4 in May, 2019, I have followed the comments on my post with great interest.

      I would like to emphasize the fact that I have complete respect for the comments of Forum members who have expressed assertions that RCH4 has helped to slow their ALS progression or that of a family member.  I do not challenge those assertions because I am not a neurologist with direct experience of the disease progression of these members or their family members.  I am an ALS patient who is trying to educate herself about ALS therapies.

      I would like to note once again that what is striking to me is the absence of information on the RCH4 website about the developers of RCH4 and the location of the company which develops and distributes it.  This appears to be a stark and concerning departure from the standard disclosure practices of pharmaceutical companies, hospitals and universities which engage in drug research and development.

      Here is a link to an article listing drugs currently undergoing trials:

      Experimental Treatments for ALS

      A link is provided for all of the drugs listed.  One link leads to a research paper and one link seems to be faulty.   However, all of the other links lead to professionally formatted websites of each drug’s developer.  All of these websites contain links to names and photos of scientists, research leaders and boards of directors.

      The same kind of information, including results from trials, should made readily available from the developers of RCH4.    The fact that it is not raises grave doubts in my mind about the product’s efficacy and safety for use.   I feel that I have found an answer to the question I posted here last May.   My conclusion: there is a lack of convincing data to support my personal pursuit of RCH4.

      Thank you.

       

       

    • #13870
      WeirdTim
      Participant

      Was told yesterday that a PALS using RCH4 was removed from this forum. Is this factual?

    • #14053
      WeirdTim
      Participant

      <p style=”text-align: center;”>Test message</p>

    • #14065
      Chuck Kroeger
      Participant

      I appreciate all the information provided on this thread.  I was told by physical therapist and neurologist to conserve my energy for things I want to do. suggestion included using wheelchair to go down the hall to the restroom rather than walking.  My ALS has progressed to the point that I seldom walk more than 100 steps in a day – maybe as few as 50 some days. I strain to rise up and walk or move to the wheelchair each morning.   I am no longer able to lift my laptop because it is too heavy to handle.  Seems everyone I read about is so different, it is as if we all have a different disease.  I eat well and have gained back 20 of the 55 pounds I lost while going through initial diagnoses.  I do stretch some but don’t “exercise” as such.  a few years ago I was training for a half marathon. Now I only dream of a slowed progression.  Wish there was clear cut info on RCH-4.  At this point (one year into ALS), I am certainly ready to try something other than Rilutek which made me sick.

    • #14101
      Henry
      Participant

      Hi Dagmar,

      I’m a nutritionist and I know more about ALS than most neurologists. The nutritionist in the clinic, if there is one at all, knows very little about ALS. The advice they are permitted to give is very limited too. Unless there is highly specialized clinic where they develop individual holistic treatment approaches, I would not expect much, but such clinic probably doesn’t exist jet anyway.

      Physical exercise can be very dangerous when it causes stress, as  well as too little activity.

      Medically-trained physical therapists often treat pALS like stroke patients, which is totally wrong.

      henry

       

    • #14103
      WeirdTim
      Participant

      Henry, agree. When I was first diagnosed,  I exercised and although it wasnt to the point of real exertion,  my progression sped up. Stopped exercising and focused on stretching and progression slowed. Then when I started RCH4 my progression really slowed, almost at a halt now.

       

    • #14105
      Dagmar
      Keymaster

      Hello Henry,
      With all due respect for you being a trained nutritionist, which gives you leeway to comment on nutritional issues — you however are not an expert in physical fitness/therapy. So, I disagree with your broad statements about exercise — especially pertaining to ALS.

      Yes, strenuous exercise is stressful to the body (and mind) — however, very few people with ALS can accomplish strenuous exercise. Much less, even accomplish moderate exercise. Newly diagnosed patients could misinterpret your statement as “all exercise is stressful” — which it isn’t.

      Nutritionists in ALS Clinics are “trained in” and study ALS. They give good advice; tailoring to each patient’s needs and are willing to look into alternative suggestions. Yes, they vary in personality and approach — but I disagree with the blanket statement that they know very little about ALS.

      The same goes for your judgement of physical therapists. Mine do not treat me like a stroke patient. They encourage me to exercise and celebrate my improvements.

       

    • #14106
      WeirdTim
      Participant

      Dagmar, what is your definition of exercise?

    • #14112
      Dagmar
      Keymaster

      WierdTim,

      My definition of exercise is: any physical movement or activity done with the intention of maintaining or improving the body’s health and fitness.

      What is your definition?

    • #14115
      WeirdTim
      Participant

      The dictionary states:

      activity requiring physical effort, carried out to sustain or improve health and fitness

      The issue is, any exertion has caused progression with me and many others. I am fortunate enough to still have some movement of my limbs and my wife helps me stretch to maintain flexibility,  not to build strength.

    • #14118

      I think we have a limited vocabulary to describe this new situation so it is difficult to express our thoughts.

      In my opinion Dagmar is right to talk about little exercises like learning new tricks to move the body and adapting to the new ALS life. What is probably important is the complexity of the activity and not its energy consumption.

      The reason I see is that complex activities like dancing or swimming are actually involving the upper neurons. Lower motor neurons are involved in more basic biological functions involving speed and strength. Muscles use a lot of energy and the energy supply is limited in ALS so it must not be wasted.

      If there is a way to preserve upper neurons by activities such as what Dagmar suggests, then it is a sort of breakthrough in ALS. Dagmar IMO you should try to think more about this, how to involve upper motor neurons with complex activities without using much energy and adapted to limited motor capacity, all would benefit.

    • #14126
      Dagmar
      Keymaster

      Since this discussion is focusing more on the issues of exercise, and moving away from RCH-4 — I have initiated a new topic in this forum to address exercise: A Deep Dive into the Issues of ‘ALS and Exercise.’

      Here is the link to join that discussion: https://alsnewstoday.com/forums/forums/topic/a-deep-dive-into-the-issues-of-als-and-exercise/#post-14125

       

    • #14171
      Sheryl Williams
      Participant

      I was diagnosed 6 months ago and would really like to try RCH4.  I asked my doctor and he said he wasn’t comfortable giving his approval.  Just curious if anyone else has had this issue and what they did to get around it.

      My progression is moving quickly and I am anxious to get going on the RCH4.

    • #14172
      WeirdTim
      Participant

      Sheryl, once I provided the information and patient experiences from Patients Like Me to my nuerologist,  she wrote a letter stating her and the hospital aren’t liable and the rest is history.

      As far as availability,  please read this from the charity and follow the links as they appear. https://www.als-new-drug.com/drug-availability-cost

    • #14362
      Marlon + Ness
      Participant

      Hi all,

      It’s been a while since I reported in on this forum but I’m happy to report my wife’s progression is still halted and we have just gone past 4 years on RCH4 which is awesome when my wife’s two triplet sisters and mother all died within 18 months of onset of this disease. Ness is leading a reasonably normal life but has lost some strength and stamina in her legs, but this has not got any worse in the last couple of years. I see a few comments on exercise on here and I just wanted to add our experience. We have found that if you exert too much, it seems that remaining muscles get over exerted and actually progresses your disease further in those muscle groups. We went on a holiday to Sydney a couple of years ago and Ness ended up doing loads of walking. We found that at night she really suffered from cramps and her legs weakened over the next couple of weeks and she never got that strength back. We now manage any exercise very carefully and have had no more progression (obviously this is also helped by RCH4 as well). Since doing this Ness has not had any cramps or twitches. Diet is also very important and we have found as advised by the charity that sends us the RCH4, that the high carbohydrate foods are good for you. Dieting and eating salads does not go good with ALS – you must battle loosing weight. Initially we were asked if Ness is vegetarian as well, because allegedly this also does not sit well with ALS and surviving as well. Now this is just advice from our RCH4 supplier, but we have found by following the advice, my wife is still on the planet so I’m very thankful

      [img]https://i.ibb.co/LRkY63X/Jan-2020.png[/img]

    • #15545
      Marlon + Ness
      Participant

      Dagmar,

      What my wife have noticed over the last 4 years is that if overexcertion in any kind of exercise is done, she will then find that she suffers cramps that night and can notice a degrade in strength in that area over the following few weeks. We have had this happen several times. We have now learnt to take life as easy as possible and it really helps. Ness still gets around and so keeps active but we just avoid over excertion. My wife is not the best eater and so my be linked to her body just not getting the instant energy required when aready depleted muscles need the extra energy to compenate. One thing that seems very common is that most people who activate with ALS are sporty people who train. The charity who supplies us with RCH4 has always said to us is that you rarely find a large person come down with ALS which seems very true (my wife was a runner)

      ANyway, I just wanted to update on Nessy’s progression. We are up to 4.5 years on RCH4 and the progression is still halted which is great news for us. We are convinced that the drug is doing a great job for us, especially when compaired to the rest of her family who all passed away with 18 months of on-set. I’ll try and upload her ALSFR-S chart below.

      [img]https://i.ibb.co/G3mVCq2/Ness062020.jpg[/img]

    • #15635
      Marlon + Ness
      Participant

      ALS victims represent 0.3% of the population. Remarkably, 28% of PALS have a history of going to the gym or similar strenuous activity more than once per week. This is pointed out in the RCH4 website, also confirmed on Utube.

       

    • #15637
      Dagmar
      Keymaster

      Marlon + Ness – – In regards to your figures that: “about 28% of PALS have a history of going to the gym or similar strenuous activity more than once per week.”

      According to the Health and Human Services website, “28-34% of adults ages 65-74 are physically active.”

      This proves that the percentages are the same for the general population and those who have ALS
    • #15755
      Steve Mundt
      Participant

      Hello, just a update on my mother she is doing quite well with no side effects what so ever!! The RCH4 charity has been supportive and extremely caring for my mother. Here is her latest monthly score.

      <div dir=”ltr”>zzzzSC.png</div>

      • This reply was modified 1 month, 1 week ago by Steve Mundt.
      • This reply was modified 1 month, 1 week ago by Dagmar.
    • #15948
      Jeanette Band
      Participant

      It has now been 2.5 years since mum commenced using RCH4 , all provided free of charge by The Charity.  Her ALSFRS scores have not declined in this time and she continues to remain stable. Much gratitude and thanks to the charity for their ongoing compassion and support.

      Her latest chart.

      zzzzrb.png

    • #13447
      Dagmar
      Keymaster

      Karl — I’ll concede that the folks at RCH4 are experts when it comes to their own product. But they shouldn’t delve into other areas such as lifestyle recommendation: specifically exercise.

      1. My impression is that someone in RCH4 had a past bad experience in a “gym” as well as with a fitness trainer, which resulted in their blanket statement to avoid gyms and physical therapists!
      • Don’t go to the gym? Ok, what about a workout at home? Is that OK? Is it the equipment? There’s lots of adapted equipment on the market. Or, exertion? Obviously, the person who wrote the statement never had ALS – – it’s impossible to over-exert; I may “want” to do 20 repetitions, but in reality, can only muster 1 or 2. Some days just putting my socks on is exerting! (ALS humor here! lol)
      • Medically-trained physical therapists know the proper exercise parameters to give their patients who have ALS. Trust them.
      • Hypermetabolic? That doesn’t mean avoid exercise (strenuous is not possible; see my comment above) rather, do your exercise and then maintain your weight by consuming more calories. Eat more! Not, move less.
      1. I agree regarding the sense of humor. In fact, current research shows that having a good emotional well-being helps to slow ALS symptom progression: https://www.sciencedirect.com/science/article/pii/S240565021930022X#bb0090
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