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Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker.
Back in 2005 when he was diagnosed with ALS, Patrick was making his mark on New York City as a rising filmmaker, DJ, infamous prankster and internet sensation.
Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife.
In a recent interview, Brian opened up about dealing with the uncertainty of his condition the best way he knows how — with a sense of humor.
Some of kids I’ve known and helped raise over the years now have children of their own.
I have gone through some situations that doctors never thought I’d survive but the worst of it all was accepting the fact that ALS would be part of my future. The following afternoon I was put into a CT scanner and shuttled up for emergency exploratory surgery. In my past I have had major anger issues and learned (on my own) how to channel and let go of such negative energy. Such an example was during the long hospital stay I had was the wonderful view out my window of a cemetery. I discovered PatientsLikeMe when trying to find an ALS support group of which this town has nothing of the sort. Having no close family really makes ALS quite a challenge and I wanted to meet others in some way to compare notes, tips, tricks, and the occasional rant once in a while as ALS is such a trial on me to face alone. We’d like to introduce you to John, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Fueled by what he calls his “zeal for knowledge” about ALS, John has been proactive in researching programs and clinical trials that might benefit him.
Here, John talks about the importance of being his own advocate and shares some advice for newly diagnosed patients: Keep asking questions!
I have a passion for fishing and then cooking dinner for my family and friends who like seafood.
What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
The obstacles that life has placed in front of me have given me relentless energies to not give up. How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like? ALS is a neuromuscular disease where I experience progressive muscle weakness and frequent fatigue.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be? How important has it been to you to find other people with your condition who understand what you’re going through? The understanding of what you are going through is paramount to understanding what’s happening to you. A clinical trial in Japan showed a treatment that showed promise for ALS patients and corroborated by some local doctors. PatientsLikeMe is a valuable resource to see what others are experiencing and what treatments they are trying. PatientsLikeMe can be more valuable by awareness, not all medical professionals are aware of this valuable tool to patients.
I have been fighting this disease for 27 years, it has been a rough road, but I am so grateful for the time I have been given. I have always felt that a patient must try to keep as positive as possible, otherwise depression sets in and that is not good mentally or physically for the body. I have 8 grandchildren ranging from 2-14: 4 girls, 4 boys, my oldest grandson had stage 4 brain cancer a couple years ago went through 56 weeks of chemo, he is now in remission. I really enjoy PatientsLikeMe, I welcome every new patient that joins, I try to help and answer any questions and questions they may have, and I ask them questions. My advice for newly diagnosed patients would be just because the doctor gives us 2-5 years to live does not mean we have to die in that time frame. During #24DaysofGiving this December, we’re highlighting all the good your health data donations are doing. As you probably know already, PatientsLikeMe launched its first community in 2006 for people living with ALS, also known as Lou Gehrig’s disease.
So, in 2008, when the results of an Italian clinical trial were published in a highly respected scientific journal saying that the use of lithium carbonate could slow the progression of ALS, we had a member community that was hungry to learn more. Last month, we introduced Gus, a member of your 2015-2016 Team of Advisors living with ALS.
Here he talks about his greatest obstacles and has some sage words for those newly diagnosed.
It’s very important, simply because you can share your treatments or how you are dealing with it. Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). I arranged all the viewings, negotiated the price, organized quotes for adaptations, dealt with solicitors, scanned necessary documents, bought hoists and other equipment on Ebay, arranged dropped kerbs for wheelchair access with the council and will hopefully move before Christmas. I have to say that the impact of MND on my abilities as a father has been the hardest thing about this disease. Eyegaze is undeniably an incredible means of communication but it’s certainly not conducive to flowing conversations. When I could still drive my wheelchair independently and didn’t require a full time carer, we were still able to go out to places as a family regularly. Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Spinal muscular atrophy (SMA) affects the nerves responsible for movement, including breathing and other bodily functions. Share this post on twitter and help spread the word for Spinal Muscular Atrophy Awareness Month. Subjects no more: what happens when trial participants realize they hold the power in clinical trials? Given the severity of their situation and the slow pace of clinical trials (it’s estimated that it takes over 10 years for a new discovery to go from the lab to the clinic), I certainly sympathized with their frustrations and did my best to get the answers they needed, asking my medical colleagues where I could and translating the technical jargon. Fast-forward more than ten years and we see a very different world, where patients have a growing voice in treatment approval, the design of patient reported outcome measures, and increasingly share their trial experiences through social media. Patients take all the risk with their health, their time, their bodies, and in return they are supposed to temporarily suspend their instinctual curiosity to know more about their health status through self-monitoring or to interact with other patients who might be in a trial, all for the good of science and other patients. That’s why our team is embarking on research this year to gain a new understanding of what patients want from trials and a new understanding of the social contract as patients want it written.
Tout pour la rentree make and respond to requests ask for information and tell about needs tell what youd like and like to do get someones attention express.
The indefinite articles un and une In French, there are two words that mean a or an: un and une. The indefinite article des Use des (some) with plural nouns: des professeurs des frites Notice that un, une and des change to de after ne(n)…pas.
The demonstrative adjectives When you want to specify that or those as opposed to this or these, add -la (there) to the end of the noun. Adjective agreement In French, the spelling of most adjectives changes according to the gender (masculine or feminine) and number (singular or plural) of the nouns they describe: Masculine Singular Jai un crayon noir. Apple is a design company, so it is no surprise that the slides are sharp (recall the iPhone 2.0 highway sign). When it is time to drill into the details, Jobs takes cover and introduces someone from his team. It is no accident that those sitting closest to the stage are the ones cheering the loudest.
Young ProfessionalsWP Cumulus Flash tag cloud by Roy Tanck and Luke Morton requires Flash Player 9 or better. Select Cleaning Action Avoid overloading washer Hand washing ? Use a sink or container large enough for clothes to move freely ? Choose a soap or detergent to suit clothes ? Put water in the sink, add detergent, mix, and add clothes ? Soak clothes 5 to 30 minutes, depending on the amount of dirty clothes ? Drain the sink and add fresh water, gently squeeze sudsy water through garments. Dry Cleaning Dry clean- to clean with chemicals rather than with water and detergent Garment is then cleaned and steamed to remove wrinkles Not all fabrics can be dry cleaned Check care labels Professional dry cleaning ? More expensive, but can remove more spots Coin operated machines ? Cost less, but don’t always provide special treatment for spot or stain removal. T HE L AUNDRY P ROCESS As a result of completing this activity you will be better prepared to keep your clothes clean and looking their best longer. Clothing Management Unit 3 Clothing Care and Laundry Tonja Bolding Lakeside High School Revised 2010.


Taking Care of Clothing Teen Living Objective 11.03 Suggest specific techniques for care of clothing. Clothing Care Chapter 14 & 15 Care for clothes Stain removals Care labels Fabric Care Laundry Products Equipment. Bachelor 1 5 Lesson Plan AR Workbook – Pages 143 – 150 Leaders Gold Reference Guide Pages 13 – 29 AR Leaders Guide Pages 95 – 120 Welcome Bachelor Merit. Intermediates Joy Jordan, Extension 4-H Youth Development Specialist and Tiffany Browning 4-H Project Coordinator, Department of Family, Youth & Community. Using a white piece of computer paper… Fold into quarters like this: At the top write “Yes” On the back of the page at the top, write “No”. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family.
As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. Unable to find a local ALS support group where he lives in Lodi, CA, he discovered PatientsLikeMe in 2012. Later that evening a licensed nurse had started a feeding session without checking patency. The surgeons never thought I would make it after a pulse of over 180 and my body in writhing pain. Shortly after being diagnosed with ALS in January 2014, John decided to retire from his 37-year career in IT. He’s already participated in studies at Massachusetts General Hospital, the ALS Therapy Development Institute, and Bronx VA Medical Center.
I push myself and sometimes too much and others need to understand that while I appreciate their assistance there are times that I just want to do it myself. Ask questions because doctors do not have all the answers, and if you don’t like the answers ask and see another doctor. Additionally, the tracking of lab results and tests is a great tool to see progression and if treatments are having an effect.
He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. You say in your profile, “If you think you’re going to die, you will so I keep going.” You’ve maintained a very positive attitude. It is hard to do that with what we go through but once you get over the shock and fear of the diagnosis, you will start trying everything to slow down the progression and to find ways to cope. I have talked to patients all over the world, every patient is different, we have lost a lot of the ones who were on this site for a long time and it is always sad to see another one pass, I do not know most personally but feel they are part of my family because we have been in contact for so long.
I have known patients that get the diagnoses of ALS then they go home and give up, those patients do not last long.
Two years later, we had an amazingly engaged and research-focused community who were willing to share data to change what the world knows about ALS. Spearheaded by two very involved members – a Brazilian ALS patient named Humberto and a caregiver in the US named Karen – we set out on a journey to collect and analyze thousands of patients’ real-world data to understand how lithium carbonate was working beyond the clinical trial setting. Here he talks about his hope that the data he donates will help not just one person – but many. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. Over his 30-year career in the automotive industry, Gus enjoyed helping people – and now he’s bringing that calling into his new role as an Advisor and how he lives with his condition. Patient to patient interaction is vital and paramount, sharing your thoughts and concerns are key.
He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. The amount of information available regarding equipment and solutions to our multitude of challenges is staggering. Is there anything you can recommend for PALS who might not be as comfortable with technology? Having had over 20 years experience in IT, I appreciate that I am better equipped than most to adapt to new technology. My triplet sons were 6 years old when I was diagnosed and I was confined to a wheelchair by the time they were 8, and when they were 9 I could no longer talk to them. Almost every activity that a parent enjoys with their kids has been denied to me, from kicking a ball around in a park to giving them a hug. But as the logistics of getting out got more complex, the family activities decreased, although this is equally contributable to the troglodyte tendencies of teenage boys. In one of my videos I mention remembering when I learnt about Stephen Hawking and thinking how can anyone live like that. And this month, ALS is being spotlighted again in a biographical movie coming out very soon. Despite being given a grim diagnosis, he defied all odds and became one of the leading experts on theoretical physics and cosmology. In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was diagnosed with ALS. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. There are four types of SMA – Types 1, 2 and 3 all affect children and adolescents, while type 4 is usually limited to those above the age of 35. Orange and purple are the two colors designated for SMA awareness, so wear or display them and let people know why you are! A few patients decided to go a step further than challenging the status quo, however, and took actions into their own hands. That’s what inspired us to write our latest article just published in the British Medical Journal which details our experiences with how members of our community have replicated a clinical trial, have started sharing their data with leading researchers to debunk alternative “cures” for their disease, and have even started taking trials into their own hands.
Modern technology up-ends that power dynamic though, and now it’s almost as easy for a patient to measure their health status with patient-reported outcomes, wearable devices, or even lab tests as it is for their doctor.
Our hope is that we can bring them together with the scientific needs of researchers to conduct robust science.
Use ces with plural nouns whether they are masculine or feminine and whether they begin with a consonant or a vowel sound. He does it once for Macworld in January, then again in June for the World Wide Developers conference. While none of us will be making keynote speeches in the near future, we can still incorporate pieces of his stagecraft into our presentations. This shields him from potential mis-haps (although he does some live demos by himself) and also allows him to take a break. This sets the tone for the whole room, and it gets displayed on the video so those not in the room get the same feeling.
Steps to Keeping Your Clothes in Great Shape Take care not to damage or soil clothing as you get dressed or undressed. Clothing Storage Store apparel items as close as possible to the place where they will be used or put on.
The 4 Steps of Laundry Step 1- Sort out the laundry ? Sort into colors ? Darks, Whites, Pastels ? Sort by type ? Towels. 11.00 Use clothing management principles to ensure long-term maintenance of personal wardrobe. One son living in our area, one son finishing college in Michigan and a daughter in Chicago.
She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. I’ve had my share of nursing home nightmares and some caregivers that made me feel like family. I try my best to make the most of each new day, and it feels the proper way to accept life with ALS. Hours later I had already had the beginning symptoms of Acute Peritonitis, all from the formula being introduced and me feeling a burning sensation.
After several months I had recovered but had to have my tube surgically placed along with relocation of my stomach to prevent a recurrence of such a catastrophic disaster.
Being no longer an option, the best way I have of releasing anger, fear, and such discomfort has been through humor or making light of some of the worst situations I’ve been in (in a tasteful manner of course). People here listen and I was surprised just how many lives I touched and look forward to reading my next update.


Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive attitude with others. They are the world to me and the reason I keep fighting, I want to live long enough for them all to be old enough to remember their papa.
Stay as active as possible, exercise but not so much it hurts or tires you out, keep your weight up, seems to help slow down the progression, if you’re going to get a feeding tube do it before you need it and before you get to weak in your breathing, it will be an easier operation if you are healthier.
This neurodegenerative condition is fatal and takes away people’s ability to walk, speak, use their arms, and eventually breathe. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.
So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in May 2013, it’s been difficult both mentally and physically.
I had worked so hard and was mastering my craft, teaching others through examples and walking them through the processes.
Sharing your stories and what treatments have worked or not, getting real answers and asking the tough questions only to be answered by those living with this illness. There is so much equipment, mostly hideously expensive, that you will need if you want to mitigate the effects of the disease – wheelchairs, hoists, adapted vehicles, communication aids, modifications to your home, the list goes on. But you really don’t need any technical ability to use an eyegaze system for communication purposes, which is the most important benefit it offers. They are now nearly 14 and I am grateful that I am still here but we have missed out on so much, both physically and through communication.
Trying to teach something using eyegaze or trying to discipline using eyegaze is at best frustrating and ineffective respectively. Stephen Hawking’s story reminds us of the reality of ALS, but is also an inspiration to all who are living with motor neuron disease. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological disorders are sharing their stories and donating health data to help improve the lives of others and contribute to medical research. The Families of SMA (FSMA) also organizes many awareness events around the world, everything from walks to dinners to Bowl-A-Thons. One patient taking part in a trial sent her medication off to a private lab to test whether or not she was on placebo, and several others took off-label experimental ALS treatments like creatine or minocycline. We feel these are symptoms of a greater underlying problem that has been with the design of clinical trials from the start – trials are all take and no give.
It won’t be easy, and it might not be popular with everyone, but it’s the best path we can see towards faster cures that respects the rights of patients to be partners, not just subjects. These are highly anticipated events because Apple uses these occasstions to launch new products. I recently re-watched the 2008 World Wide Developers conference and took notes on things I could try to emulate in my next pitch. When the detailed demo is complete, a rejuivenated Jobs takes the stage and refocusses the conversation on the big picture and then sets up another drill-down with another presenter. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. Having once the illusion of absolute control and then having that revealed to me that control is an illusion was a very hard thing to accept.
I have an 11-year-old granddaughter who has been able to flush my feeding tube since she was 7, she is my mini nurse, I call her little bit. I have found that if you start on a bipap breathing machine if only a hour a day before you really need it, it will give your lungs a bit of a rest, and could prolong your life.
Your caregiver or partner will have as much or more input, simply because your thought process will take time. But I am living like that, and whilst I disagree with some PALS who say there are positive aspects to our situation, you do adapt to it if you develop these three key attributes – perseverance, patience and most importantly, ACCEPTANCE.
And in the spirit of Stephen and everyone living with these conditions, we’re recognizing Spinal Muscular Atrophy Awareness Month this August. The double-blind placebo-controlled randomized controlled trial is a “gold standard” in medicine, but unless it adapts to the changing realities of the patient empowerment landscape, it will be inherently unsustainable. It is a bit long, but Jobs isn’t pitching his company to a venture capitalist so its OK if he bends the rules a bit. The first thing he said was how the company had three components (three-legged stool analogy). Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk.
Get into a stem trial or drug trial if possible, and most important do not give up, find a reason to keep going, set goals for yourself, when you reach those goals make more, we all have to have a reason to keep going. Have an open line of communication and don’t hold anything back, your concerns and how you are feeling mustn’t be held inside. And for me, it’s half the battle I thought at the beginning it would be difficult but it’s not. So I thought that a video demonstrating most of the equipment I use would be a simple and quick way for fellow sufferers to see what’s available, but more importantly seeing it being used.
It was only after I got more confident with eye control that I ventured out of the easy environment of The Grid 2 software and started using Windows directly. In the end, none of these interventions were shown to slow the disease, but it certainly showed what was possible when a smart, dedicated, and adventurous group of patients could organize online. If I ever pitch a new business idea, I will definitely hire a freelance designer to make my message visually appealing.
Instead he looks like a hero for effectively responding to customer demand, and offering the new one for half the price. Or maybe I could have my team members sitting next to me so they can jump to assist if necessary. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles. I think my favorite thing about being a papa is making them laugh and watching them play and grow.
I take lots of vitamins, do they work I do not know for sure but I am still here after 27 years so it is not hurting me, one of the main ones is CoQ10, and coconut oil I hear is very good for patients. Furthermore, I have realized that for many issues there simply isn’t an off the shelf solution. Being able to control all the computers in the house means I can help out with IT related stuff. Basically, he has everyone eating out of the palm of his hand – even if only for a little while. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself). I call it sharing your “wins” and then counting them each and everyday, reminding yourself of what you have accomplished. And in my experience many of the healthcare professionals just aren’t very creative, so I wanted to share my ideas like the chin support, heel pressure reliever and hoisting techniques to others. It also allows me to participate with family life as I am able to control all the computers and network devices in the house, which means I can sort all the problems out. I have setup Minecraft servers for them and helped install mods, I have installed and monitored parental control software and setup backup facilities and  I have fixed virus problems. If you read a report on the speech, it can be effectively summarized in a paragraph or two. Then he repeats the emphasis every time he makes a slight topic shift, driving home the point that the iPhone is the focus but the different parts of the presentation are a component of the larger iPhone strategy.
My workouts, running 4 miles every other day with my son releasing the tension and anxiety, it would clear my mind and would help me refocus my thoughts and follow-throughs.
Having made the video, the filmmaker, Bernard, wanted to expand the idea to how MND impacts on a family. He constantly ties the specifics back the general, and this keeps every portion of the pitch relevant.
Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression.
Then finally I wanted a sixty seconds version, which could be potentially used as a hard-hitting awareness campaign.
Remind them that they are still a vital part of your life and your world will always and forever need them.
I believe whatever happens in the future will be even better, why do I say that because I have faith and their is no other person like me, Mr.
The 3000-word narrative took several days to type using eye movements, but I am proud of the results.



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