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Thread: ALS Worldwide site

  1. #1
    Forum Member ccinjersey's Avatar
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    ALS Worldwide site

    For All

    I was looking at research, and information on the 'ALS Worldwide' site, and they had different headings and one was called 'Perspectives'. Which shared some stories of others living with ALS. Wanted to share this one because I thought this man's attitude was very powerful.

    CCxox


    ********

    20 Years Since His ALS Diagnosis, Craig Remains Positive And Inspiring: One Man’s Story
    Craig Brasfield
    Alabama, USA

    "This month marks 20 years since I noticed a weakness in the index finger of my drawing hand and our Adventures With ALS began. This disease has taken my art, strength, voice, independence, dexterity, energy, & balance. No driving, drawing, strolling, video games, easy outings, non-e-books, singing along with the radio, sudden movement, or even idle conversation.

    I don't tell you this to be pitiful, but to declare my happiness. Happiness doesn't rely on your circumstances always, but on your heart & mindset. Everyone gets down sometimes, but if you're not generally happy right now, change your thinking or you're unlikely to ever be. Enjoy whatever you have & love YOUR life...you're probably more blessed than you've realized lately!"

    The power of positive thinking should not be underestimated for anyone, but especially for those with ALS/MND. The benefits include, creating a buffer against depression, improved coping with stress, improved immunity, resilience, and overall health. Mayo Clinic has found that a sense of optimism increases life span, lowers rates of depression and distress, and produces improved coping skills in times of hardship and uncertainty. For all these reasons and more, developing an optimistic perspective for people with ALS, caregivers, family, friends and loved ones is important. Fortunately, there are ways a positive attitude can be developed.

    Mayo Clinic suggests that maintaining a sense of humor, pursuing exercise, following a healthy diet and being surrounded by supportive people can promote a more positive attitude. Pursuing meaningful, enjoyable activities that provide satisfaction also help. Maintaining faith and connection, whether it is with a religious institution or a network of family and friends, can be a great source of mental healing which in turn can affect physical well being.

    Mindfulness and relaxation can help identify the fine line that exists between a sense of hopefulness that research will provide answers and that life still offers opportunities within the reality that ALS/MND is a challenging disease. Yoga is a mind-body practice that combines stretching exercises, controlled breathing, and relaxation that reduces stress, lowers blood pressure, improves heart function and increases serotonin levels. Massage also reduces stress, pain and muscle tension. Support from a mental health professional is an excellent way to initiate a more positive life view.

    A strong interpersonal network that prevents isolation from occurring can also deliver positive results. ALS patients sometimes feel the need to protect loved ones from the effects of the disease or feel too embarrassed by their disability to be in public. Those who continue to do the things they enjoyed before their diagnosis live longer, healthier lives. A core network can be made up of family, friends or an organized community willing and able to provide support.

    Further, there can be a very positive “placebo effect” from the many opportunities that already exist in our lives, bringing mind, body and spirit together in a constructive manner. Live life as fully as possible. Invite friends over for the evening. Take the trip you planned. Go out to dinner, see a movie, get tickets to the theater. Participate in family events. Take a 1-2 day vacation at a local hotel. Ask your friends and family to help make these events happen. Not only will you feel an improved sense of wellbeing and quality of life, but those around you will benefit as well.
    Last edited by ccinjersey; 17th April 2017 at 03:35.
    "Be gentle with yourself. You’re doing the best you can.” - unknown

  2. #2
    Forum Member Barry52's Avatar
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    Thanks for posting this CC,

    Craig's story mirrors my outlook on life with MND. We can't change what is, so learn to live with it and don't let it rule you. We are very good at adapting but remember always to stay safe.

    Barry x
    Life is a journey, not a destination.

  3. #3
    Forum Member ccinjersey's Avatar
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    Hi Barry

    Indeed you have a great attitude while dealing with the daily challenges of mnd. I'm sure it's a lot easier said then done, but if this kind of perspective can be accomplished it does sound like there are a lot of benefits to it

    For those living with mnd you might want to consider registering with 'ALS Worldwide' its not just for those living in the US, but for around the world. and they could possibly assist with some needs as well as mnda..

    Below is another story. This one is for all you Caregivers.

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    Pauline’s Letter To Caregivers
    Pauline Jepson
    Connecticut, USA

    Steve was with diagnosed with ALS/MND on January 2, 2015. That’s 22 months ago, wow! How time flies when you’re having fun. Well, it has been fun – in fact, it still is. We laugh every day, every hour or so, really. Don’t get me wrong - there are some really hard times when I wonder, “How can I do this?” But it passes in a second and we move on to the next task.

    Caring for the love of your life at 46 is no easy thing. I want him to walk through the door again, I want him to get up and rush off to work, I want him to come home tired and hungry, I want to watch him walk the dog, I want to see him chopping wood in the garden, I want to see him jump up when Man City scores a goal…

    The list is endless of the things I miss seeing him do. Steve was so active that it is hard to see him not want to get out of bed on some days. It’s hard to motivate him to do things when he gets so tired just having a shower.

    Now, it’s not all doom and gloom - you only have to look at my Facebook to see how active we are. So many friends and family members have been over to see us in Connecticut over the last 20 months. It is like running a bed and breakfast at times and we have loved every second of it. I see a different Steve when family and childhood friends surround him. If he is positive, then I am positive; if he is sad, then I am sad.

    Caring for him is what I promised in my wedding vows so many years ago - 23 years, actually. As a carer you have to do so much: bathing, toileting, shaving, brushing teeth, dressing, undressing, feeding, medications, doctors’ visits, hospital visits – again, the list of what we do is endless, and this is just the extra stuff. The everyday stuff, like taking care of your house, garden, going to work, spending time paying bills, and seeing family is normal life. You have to do all of that and all of the extra things now, too. It is demanding on your time, your body, and your mind.

    It is important to take care of yourself - when others offer help, grab it with both hands and feet. Take them up on the offer to help. (I need to listen to my own words.) I know it is not easy to accept help; I am terrible at it myself. I see it as “if I need help, I am failing Steve.” No, no, no—that is not the case. You need to take time for yourself: read a book, go for a walk, whatever makes you relax. I don’t do enough of it, so my advice to carers out there is to do just that. Take time for you, be a little selfish for an hour a day.

    It’s hard to work full time and care for Steve, run a house, and still have time for our kids. I feel like I don’t get a second, not a single second, where it’s just about me. I am either working, caring for Steve, shopping, cooking, cleaning, or doing whatever it takes to get through the day, and even then the night time brings its own issues.

    My point in writing all of this is this: I didn’t know how hard it was going to be and I didn’t know how tiring it would be. People tried to tell me what was coming. I even read what was coming with each progression, but you never really think that it is going to get to that stage.

    Being a full-time carer for Steve is not easy. He was such an independent man that I can see each thing I have to do for him bothers him. He sees me rushing around trying to please everyone, everyone other than myself. Writing this down is actually quite humbling and makes me realize that other carers are probably just like me: from the outside it looks like we have it all worked out, but we don’t. Yes, we have a routine, but with this disease anything can change in just a few days or a week. The goal posts are always changing. I’ll finally feel like we have it down, then with another progression, even just a small one, the routine changes again.

    ALS Worldwide has certainly helped me; I read other people’s stories and they let me know I am not alone. Those stories can also motivate you to be a better person, a better carer, a better mother, friend, daughter, sister, niece, cousin. I can do a good job looking after Steve; I will do a good job looking after Steve. Will I have moments when it feels like the world is crashing down? Yes, I will, and I will get through them. I’ll brush the rubble off and find something to talk to Steve about, something to show him, somewhere we can go, somewhere we can laugh loudly and have fun, surrounded by family and childhood friends.

    To other carers: well done. What you do is beyond words; only those who do it know what you go through on a daily basis. You are the silent hero in all of the sickness in the world, so Happy Family Caregivers Month to each and every one of you that is doing it, has done it, or is about to do it.

    To Steve: I love you more than words can ever say. This disease can take parts of you away each day, but it cannot take away what I feel for you. I will care for you for the rest of your life.

    All my love as always, your loving wife,
    Pauline
    "Be gentle with yourself. You’re doing the best you can.” - unknown

  4. #4
    Forum Member ccinjersey's Avatar
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    Hi All

    I was reading more from this organization and found this article interesting because it shares some homeopathic relief for these symptoms as well that many of you may already know, but for those that may not below is the info;

    xox

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    Congestion

    Congestion, the build-up of fluid or "swollen tissue" in the body—particularly the lungs and/or nasal cavities—poses great risk for ALS patients. The decreased ability of the diaphragm makes it difficult to sneeze out the excess mucus or cough up phlegm. Mucus and phlegm both contain bacteria and attract more bacteria. If left unaddressed, they can lodge in the lower lobes of the lungs and ultimately cause pneumonia, one of the three leading causes of death among those with ALS.

    When discolored mucus or phlegm occurs, the first course of action should be to consult your physician who can prescribe antibiotics to treat any underlying infection. Other treatments may also be prescribed, including Mucinex or Robitussin expectorant cough medicines. Cough suppressants should be avoided because it’s important to expel the accumulated phlegm. Decongestants or nasal sprays can be helpful, although when used repeatedly, these can cause "rebound inflammation." Other remedies include increased hydration and inhalers such as Mucomyst or Albuterol. For some, the cough assist vests or nebulizers that use distilled water, saline solution or other medication can be helpful.


    Phlegm and Mucus Reduction

    PharmaNAC, available through the company BioAdvantex, are effervescent, wild berry flavored tablets that help thin and reduce phlegm. They support a healthy immune system and helps to maintain good respiratory function. Additional home remedies for phlegm and mucus reduction include:
    •Drink plenty of water with or without thickener as needed
    •Hot saltwater gargle helps dissolve phlegm.
    •Avoid dairy as it produces phlegm
    •Avoid foods high in fat
    •Garlic and radishes can reduce phlegm
    •High-fiber fruit, specifically apples and pears, reduce phlegm


    Excess Saliva

    For those who experience difficulty controlling saliva, 2 glasses of tomato juice daily can be beneficial. If this is too harsh on the stomach, add 1 tablespoon of sugar to each glass to cut the acid. Tomatoes are the highest source of lycopene, which naturally reduces salivary output. Sea salt packed on the tongue, as well as olives and lemon, can also help reduce saliva. If more aggressive treatments are needed, ask your physician to consider providing prescriptions for medications like amitriptyline, Nortriptyline, Atropine Sulfate (formerly known as Sal-tropine), and Scopalamine all can help control excess saliva.

    Runny Nose

    To treat a runny nose, keep the air moist through the use of an electrical humidifier or vaporizer. Saline nasal sprays can also be of aid by shrinking the swollen tissues that produce mucus. Simply Saline is one option. Try a natural herbal tea of 1 cup of water boiled together for five minutes with 1 tsp. each of elderberry, fresh mint, yarrow root and cayenne pepper. Strain herbs, allow tea to cool, then drink. Keep your handkerchief handy, because this tea will make your nose run even more at first, but your symptoms will soon dry up. Andrographis is a natural homeopathic treatment that is often called “Indian Echinacea,” as it shares many of the same curative properties. Readily available in natural food stores, a dosage of 400 mg three times a day before meals can help dry a runny nose. Chewing raw ginger and swallowing the juice warms the body, increases circulation and helps drain the nose.
    "Be gentle with yourself. You’re doing the best you can.” - unknown

  5. #5
    Forum Member ccinjersey's Avatar
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    A growing number of retailers support ALS Worldwide by offering their customers the opportunity to buy products they like and help support our unique mission at the same time.

    AmazonSmile

    AmazonSmile is a simple and automatic way for you to support ALS Worldwide every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to ALS Worldwide.

    And yes, you use the same account on Amazon.com and AmazonSmile. Your shopping cart, Wish List and other account settings are also the same. To shop at AmazonSmile simply go to smile.amazon.com from the web browser on your computer or mobile device and select ALS Worldwide as your charitable organization.

    Ebay Giving Works

    The eBay Giving Works program offers buyers, sellers and donors an easy opportunity to benefit ALS Worldwide through activities on the online auction site. Sellers can list items for sale and designate a percentage of the sale price to help ALS Worldwide fulfill its unique mission. Buyers can purchase items from the ALS Worldwide eBay Giving Works section that support our organization. Buyers, sellers, and donors with a PayPal account also can simply make a donation through the eBay Giving Works Donate Now option or during checkout. Visit the ALS Worldwide eBay Giving Works page to get started.

    GiveAsYouGet.com

    GiveAsYouGet.com gives you an easy way to shop online and simultaneously donate to ALS Worldwide. GiveAsYouGet has partnered with many large online vendors that you already shop with such as 1-800-FLOWERS.COM, Expedia, and Target. There is no additional charge to shop with GiveAsYouGet. Access your favorite online shopping sites through this portal and a portion of the purchase price will come back to ALS Worldwide. Click here to get started!
    "Be gentle with yourself. You’re doing the best you can.” - unknown

  6. #6
    Forum Member ccinjersey's Avatar
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    United Kingdom Commitment to ALS/MND
    By: ALS Worldwide

    Our purpose in visiting and reviewing the United Kingdom's ALS/MND facilities began in 2013, based upon our awareness that a great deal of research was underway in different locales. We knew that Dr. Ammar Al-Chalabi had an excellent research project underway and we wanted to learn more about this app that would help patients in the emergency room. Plus his excellent relationship with patients was something we wanted to learn more about in depth. We had already developed a close relationship with Professor Nicholas Mazarakis, B.SC., Ph.D., and chair of the Gene Therapy Division of Medicine at Imperial College in London. His work in gene therapy was known as among the finest worldwide. We had met him some years earlier and wanted to learn first hand what further progress had been made, visit his laboratory and find out what his efforts meant on behalf of the ALS/MND patient community.

    For several years, we have attended the excellent International Motor Neurone Disease Symposium, in Toronto, Orlando, Chicago, Milan, and elsewhere. These events have been exceptional opportunities to learn what is being done for patient care and support, to meet with researchers, neurologists, clinicians, to create contacts between individuals working on similar aspects of research, and to discover current research efforts worldwide. These symposia are hosted by the Motor Neurone Disease Association, located in Northampton, England, under the direction of Brian Dickie, MNDA Director of Research. His outstanding efforts to bring together everyone working on behalf of ALS/MND have made a huge impact on the development of treatment and care for patients. It made perfect sense to meet with him in person again and learn future plans for the organization.

    Sheffield Institute for Translational Research (SITraN) was very high on our list of priorities. Professor Dame Pamela Shaw, Director of this institute, was joining the ALS Worldwide MicroNeurotrophin Consortium because the basic research looked compelling to her. We wanted to spend time with her and her research staff to determine how this important aspect of research would be realized. Most importantly, we were able to have Dr. James Bennett, Professor Emeritus (now) of Virginia Commonwealth University, accompany us to Sheffield to meet directly with Professor Shaw, two very important participants in the Consortium.

    United Kingdom Commitment to ALS/MND reflects the highlights of our visits to England in both 2013 and 2014 and several interviews with scientists and researchers in the UK. Our hope is that readers, both scientific and laypersons, find the information worthwhile and beneficial. This publication was made possible through generous support provided by The Sharna and Irvin Frank Foundation, to whom we and the entire patient community remain so appreciative.
    "Be gentle with yourself. You’re doing the best you can.” - unknown

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