How I’m Living My Best Life with Multiple Sclerosis | Robin Brockelsby | TEDxUniversityofNevada
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- Опубліковано 10 бер 2020
- Does being diagnosed with an incurable disease mean you’re fighting a losing battle? Not according to Robin Brockelsby, who after 46 years of perfect health was diagnosed with an incurable disease called multiple sclerosis. In this compelling, informative and uplifting talk she shares what multiple sclerosis is, how it feels to experience a life-changing medical diagnosis and the tools she is using to fight back against her chronic disease with strength and purpose. Robin Brockelsby is an Entrepreneur, Speaker, Fitness Enthusiast, and proud wife and mom to 3 teenagers. As Founder of Embrace the PATH (www.embracethepath.com) & Past President of Crisis Support Services of Nevada, Robin believes passionately in inspiring and empowering others to succeed by helping them to conquering their challenges & fears. Following her 2018 TEDx talk on overcoming fear, Robin was featured by Yahoo Entertainment & Lifestyle in their “Inspired By” campaign. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
I was just diagnosed today and I’m trying to cope so prayers are welcomed.
Don't worry, it'll be all fine;)
@@sonamkosandal8233 thank you 😊♥️
You'll be fine.
I was diagnosed a week ago and we’ll both be fine 💪🏼
Stay strong, you've got this! I was diagnosed at 21 and I'm now 11 years into this journey. There is hope. Keep your chin up and focus on all the good things that come your way. Prayers! Xoxo
I was diagnosed in 2018, my entire right side was seized up and unusable, balance was thrown off and could hardly stand. With physical therapy, modern medicine and dietary change I was able to get back 100 percent health. Doctors thought I would only regain around 50 percent strength. A message to all MS'ers stay positive, don't get down on yourself. STOP eating processed foods. START to meditate and exercise daily. This disease doesn't make you weaker than the average person, it actually makes you much stronger, and can give you a much deeper appreciation for life.
THIS.
everyone recovers at beginng.. you still have ms...spms hits at age 40-50..
agreed
Thank you for this 🙏
Love this! I have had MS for 45 years now and am back at work in my late 60s because I can! We need these success stories with the emphasis on life style changes.
Beautiful!!!!
Please watch Dr Wahls ted talk if you haven’t already. God bless
Cherie Binns a
Amen!
@Robin Brockelsby Thank you for your story. It help me.
I got MS when I was 15, at first I was so scared but and now I am 23 and feel good because I believe nothing happens without reason. God never gives you something which you cannot handle. God bless you all.
Amen! Never give up!
I was diagnosed with ms when I was 15 too and I'm also 22 now, so I completely understand your struggle..
@@camrynmcgough2612 how are you feeling now? i actually have not talked to anyone who can understand me!
@@samarsafavi7403 im feeling good! some days are definitely better than others (especially with the heat) but I try to stay positive and get plenty of rest. you're more than welcome to message me on Instagram too @camryn_mcgough if you wanna talk more!
I had Ms when I was 16, now I'm 19 and I'm doing well
“and you still did this to me” i’m crying... acceptance is one of the hardest parts of any illness. she’s amazing for talking about this.
Me too 😭😭
It took a long time before I stopped feeling like my body was betraying me and begin to treat it as a precious friend in my journey to live well with MS.
I’m in the anger stage right now, it’s pretty intense, but I know it will pass
@@down-to-earth-mystery-school yes it will. don't give up. Many of us have gone through it and you will get through it too...
I feel like I might cry. Battling MS is hard and unpredictable, sometimes it gets me all in tears and asking "why me?". It is hard even trying to explain why I'm so tired, why I sometimes walk without coordination and why sometimes I don't really feel my left hand. You know what? I'm tired, but I'm alive. I'm walking weird but I'm walking. I sometimes don't feel my hand but I'm capable of moving it. Not gonna let this defeat me, MS is my new bestie and I'm more inspired to live and appreciate my best life than ever, as mentioned by amazing speaker.
Preach...When was your diagnosis?
Please watch Dr Wahls ted talk. Changing her diet to the necessary foods and nutrients she needed made all the difference. You have to see her testimony. I sincerely wish you all the best
Dawn Girl, that’s fantastic I’m so happy for you!! That’s my hope for anyone battling a physical condition to make food and exercise modifications not just accept a fate of health decline.
I completely understand. I am the same way. Sometimes these video's do a disservice and people think, it's easy and so you get tired (no fatigue is not tired, i shut down around 5pm each day and sleep for 2 hours. I can't fight it and it doesn't matter where I am). So your feet and/or hands tingle a little. (No they tingle a lot and feeling like fire ice picks are in there 24/7). So you walk with a cane (no I should be in a wheelchair, but refuse). Also we have swallowing problems, losing control of our tongue and this leads to speech problems). So you are a little forgetful. We all are (No we have cognotive deficiencies and even though you have picked up your daughter at the bus stop at 2pm everyday for 6 years, now you have 3 alarms to remind you. Plus your husband calls. Your husband says get eggs bacon and milk. Also bread. You just remember bread.) You live average life span
No.most I know pass young with heart disease or respitory problems because our muscles weaken over time.). Yes you can live a happy life, but it's work, everyday is a struggle for some of us. I am 50 and in worse condition than my 72 year-old mom.
Please tell me process of treatment my son is also suffering from this desease from last 4years he is under treatment but not cure the profile picture is of my son please help us
My mom was diagnosed with multiple sclerosis in christmas of 2011, within a week. She felt some of those symptoms, the tingling in one of her legs and the loss of sensibility in one of her hands. She always felt something wrong with her hand but the doctor said it was nothing... For years! In 2011 she felt those symptoms intensified, so me and my brothers made her go to hospital because it wasn't very usual. She was diagnosed with multiple sclerosis and came out of hospital in 24th of december. It was a very difficult journey for her. She had to change her treatments for two or three times because her disease was getting worse after the flare-ups. She stopped working because my father thought it was better that way and because that option was possible (fortunately my father has a stable job). Today she is a very healthy and strong woman, she faces life with an huge and strong smile. She goes almost everyday in long walks, she is an excellent and active grandmother, she eats very healthy and, most important, she tries to run away from stress and big emotional changes. I'm very proud of her. She's the person I love the most in my life. Because of that, now I'm studying Biomedical Sciences and I want to take my PhD in Neuroscience and understand better this disease, because my mother always lived for me and always gave me everything, so if there's a chance I can try to make up for everything she has done for me, I will sure do it. I wish the best of luck and very strenght to every person with this disease, and remember, there will always be someone in labs and hospitals trying to find a reason why, a better treatment, a cure... We are out there! :)
Thank you very much u really made my day :)
You are such a thoughtful daughter. I'm sure your mother is blessed to have you as a daughter 🙂
@@bifura-san2120 I'm glad I did :)
@@noexcuseschristians Thank you for the kind words :)
@@bifura-san2120 I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
I think the toughest part of MS, for me, is not knowing what the future holds. And it makes me question everything from the past.
I only had 19 years of young health. I was married at 18 and diagnosed at 6 months after marriage. Was told do not have children, just raising them will take a toll on you! I was young and stubborn enough to fight back. I m now 62 and still fighting with Ocrevus and the help of my family
Thank you for the story of your experience.
Did you end up having kids ? ♥️
Newly diagnosed and this is exactly what I needed to see.
Same here, you are not alone 🧡
Not alone!! I am 34 and I'm suffering this disease since I was 3. I know everything about MS, so, if you have doubts or something I can help, please write me.
Same here , I got diagnosed in April 2020
Guillermo Torres Bravo I think I have ms
Guillermo Torres Bravo what age did you start ms treatment?
I was diagnosed with multiple sclerosis in 2018. I was 21 years old and in that year I had lost a family member and went through my first heart break. For the past 3 and a half years I have been a Latin dancer which has been a passion for a long time. I have performed and competed on stage for the past 2 years. Last year I tied for second place for my salsa pro/am freestyle. I also won my bachata pro/am freestyle!
Her opening minutes was the last three years of my life, i'm trying to be ok with this.
I was dxed in 2000 (the Friday before my spring break. Yeah 🤦). There were 3 drugs for MS at that time. I go to a neurologist now who is a world renowned specialist in MS (his mother had it bad, and so he made it his passion). Last time I saw him, he said there are now 30 something treatments for MS, with more on the way. He also said that within my lifetime I will see treatments that reverse the damage. Then the next time I saw him, he said, "remember how I told you you'd see this within your lifetime? Now it's more within a decade". So this isn't a life ending disease. Help is on the way.
This made me cry. I can see how I really want help.
YES! So looking forward to reversing the damage that MS has caused.
So glad I found this talk. Diagnosed with MS last year. I am 28 now, a CA finalist, it still kills me to think that i m not able to walk properly. My condition is progressive in nature though I have not given up. I am positive each day n believe me it is no easy.
But i m not giving up.
I know some tips to halt the progression. Let's talk.
Just be positive.....aap jitna positive rhogi es bimari se aap utni he ache trh fight kr logi...this is my personal experience....trust me...
I'm your age
In feb i had optic neuritis and I'm still on steroid treatment. I did a blood test today that will determine if i have this or not and I'm very scared as i only have a father who's 79 years old. I hope I'll be physically able to have a normal job at least.
How are you are you Indian?
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
So touching. I cried my eyes out when you were talking about your pains. I recently got diagnosed with multiple sclerosis and i can say I'm going through a lot these days. Wishing everyone with multiple sclerosis a healthy and easy life.
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
back at 'cha. Hang in there. You will find your way.
I was diagnosed at 18, which was just 5 years ago. I find this talk very comforting to me. It reminds me that just because I have MS, it doesn't mean my life is over. Thank you so much for your inspiring words ❤
Special hug x
My aunt had it for 5years, until she apply herbal remedy for her cure
Indeed herbal medicine is the best
@@sarahplain6287 What herbs did she use?
@@laurapoling5539 herbal remedy from Dr hadi
@@laurapoling5539 Moringa herbs
Bailey, I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
Very inspiring, so added it to my fav's... I, was diagnosed with RRMS 15 years ago I'm now 45 and at the age of 30 I felt my whole world come crashing down but just like Robin, I had to accept my fate & what was now my new norm & granted "it's been tough" but I've "changed my attitude" towards so many things & kept the faith alive, and I keep on going through all adversity... Coz once you're defeated mentally, you're defeated spiritually & ultimately physically even without the aid of "chronic illness!"
So I say that to say this... Be strong all my newly diagnosed MS warriors & stay positive in your mindset & don't allow the challenges you face define you it's not the end; far from it.
And to my veteran MS warriors, keep on keeping on... God Bless you all peeps... Love & light!!!!
Dr Wahls ted talk is amazing on MS
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
A huge embarrassment is doing a side step while walking. The tag line is true, "we're not drunk, we have MS" applies. I have had to say that a few times in the last 20 years!
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
I had my first relapse in 1994 I remember it all to well I was off work for one month could not get out of bed. Lost my vision (Optic Neuritis) and severe vertigo. The Dr wrote it off as stress. After getting my “first” MRI done 16 yrs later I was diagnosed with it while in a relapse. Thank you for sharing your journey as everyone’s journey matters. Stay strong and keep smiling! 😊🧡🧡
I recently started working in neurology department, and meeting patients with MS made me realize how much I should appreciate life and everyday blessings like being able to run. Big respect for all you guys, and never give up on yourself! Keep fighting this battle and enjoy as much as you can, because I promise, you aren't alone on this journey. ❤️
Hey 👋🏾
I tell people this every time I’m asked what’s wrong (as I use a stick).
I tell them they have their health and not to take it for granted 😊
I was diagnosed with MS when i was 12 years old. Im 22 soon 23. And my first symptom was central vision blindness. I was very young and my third attack was very scary. It took everything away from me. MS made me sacrifice things I didn’t want to from making friends, talking walking or feeling like a normal human. It caused Bipolar disorder and because of its immune system killing itself ms caused other diseases too. To this day, im suffering but im glad i can see again.
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
So sorry to hear that..how are you doing now?
Try avoiding inflammatory foods. Do a food allergy check and stop eating foods that cause you inflammation. And pray well. God is a healer.
my brother was diagnosed during covid, he lost his job, his fiance left him. I want to help him get back on his feet and be there.
I’m so sorry for his loss, but he deserves a loving and supportive partner. It makes all the difference!
🙏🏽
i hurt so many people with my attude and mood swings i didnt understand that ms was making me be someone that was very unlikable, but i recognize it now and know how to handle my self better by resting properly exercising and eating healthy foods
My 32 year old daughter was diagnosed with MS 2 weeks ago. We are still in shock and I feel completely devastated for her. However, we are trying to stay positive and optimistic but geez its really tough. Luckily we live in Australia and most of her medical care is covered through Medicare and her medications will also be covered under our country's PBS. I do really feel for our friends in the US who are not adequately covered through their private insurance - very unfair. We are trying to take each day at a time....but as her Mum, I can't help but be very worried about her future. Wishing you all the best of health and happiness.
Great presentation. I found out I had MS at 51. I asked not Why Me but rather Why Now. Weren’t we supposed to retire and have it easier? Instead of starting out on a new battle at 51. Then I flipped to gratitude. I Had Had 51 healthy years with career, travel, family etc. Thank you for explaining the battle and the mental strength needed to stay strong.
My Mum was diagnosed last year at the age of 52. Thank you for this attitude, it inspires!
You’ve lived 51 years of your life.
I too was diagnosed at 51! Looking back I had had the stress of the loss of my mother, a divorce and all that goes with it, and hormone changes. I also am so grateful to have been an active person raising 2 children and having a tremendous career as a physical therapist. It’s not always easy but I try to see the good and am thankful for love and life.
You are Lucky. I had it at 18 years old and i had To build my life and my career with it.
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
Great talk! I am 38 and have had RRMS since I was 21, but officially diagnosed at 27. It’s a roller coaster ride and still is. I was on Tecfidera from the start, and currently taking Vumerity. I also may be switching over to one of the newer infusion drugs in the near future. I am blessed to still be athletic, but there are times I have my days where I am weak and my brain fog creeps up. If you are newly diagnosed, do NOT ignore treatment. It’s one of those illnesses where you need to incorporate western medicine, along with a good diet and exercise. Those three go hand in hand, and if you follow up with them, you will be fine 😊.
I am confident that within the next 10 years we’ll have better medicine to slow it down more or even halt it. I hope scientists find a DMT that only nukes problematic B cells instead of all of our B cells 😅
I got it when I was 17 and I was sad at first but then Allah guided me.
I am 46 and currently amid testing to see if my issues are MS. Love this talk as tears run down my face. 💚
Was so proud I made it to 30 minutes on the elliptical … then the next day at 30 minutes my legs collapsed and three men had to help me up. Of course I cried out of embarrassment but I should have laughed. I did 30 minutes two days in a row. The elliptical is a replacement for not being able to walk without a limp. It’s a godsend.
Diagnosed 3 months ago. Feels like my prior self has died. I am still grieving the loss of who I was an am fearful of my future. I am still young and already blind in one eye. This disease is horrific.
You are loved and not alone💜
i do not wish this upon my worst enemy...
😔
Truly amazing! My wife was diagnosed in 2009.Thank you for sharing your story!
Im diagnosed in 2019 and ALHUMDOULILLAH proudly fighting
Me 2 i was diagnosed in 2019 inshaallh you will be able to win it 😊🤲
@@hanaalmansori2333 AMEEN!!
@@Amaan001 fight it off man! Believe in Allah, he did not give MS to you without a reason, he gave it to you so he can test you on how you will handle the situation. Fight it off!!
@@hanaalmansori2333 ^
Me 2 same year , How do u fight????
I'm 29 years old and have been living with MS since I was 23. I've been struggling more so recently because I'm wanting to start a family and I'm worried about starting medication. We are in no position to start a family at the moment and I'm worried about going on a medication to have to get off of it in a year or so. I've also been extremely scared about my health. I haven't had an episode since my first diagnosis but I feel like a ticking time bomb. Sorry for the rant, I just wanted to say you are a huge inspiration to me. Your positivity is exactly what I needed. Thank you so much for doing this TedTalk.
You can live a Healthy and Successful life. Go Strong
Meds don't work. The only way to success is nutritional therapy and lifestyle change. Good luck on your journey!
Please PLEASE I hope that you see this reply. Look up Dr Aaron Boster, Boster Center in Columbus, Ohio. Look at his UTube videos! I have this disease 10 yrs in, You need an aggressive informed, passionate doctor advocate along with you on this journey. See all his videos. L
@@chris1960 There is absolutely no data that shows the MS drugs slow down the progression of the disease or improve the quality of life. I base my opinion on research data that I have access to, not conspiracy theories.
@@chris1960 We should find a way to spread this information among people! The enlightened ones will join us! And the rest.... Well...I am afraid we will have to push them of the edge of the planet.
I was diagnosed Jan 2021, with RRMS, EDSS 1. By September 2021 I declined to EDSS 3.5.
I thought my world was over..
I had numbness in my hands, legs, nausea 24/7, bouts of dizziness, the MS Hug, lower back pain, couldn't make it past a bathroom and the list goes on. I was fortunate that my mobility wasn't impacted.
I found out about HSCT and went in October 2021 in Monterrey, Mexico to get it.. unfortunately, this treatment is still stuck in clinical trials phase 3 in the states.
It has an estimated ~85% chance to halt RRMS.
My last MRIs showed no new activity!
I work 40+ hours a week and I only take vitamin D once weekly. I have enough energy to cook dinner when I get home, too!
I wish this was offered as a frontline treatment for everyone with MS....
I am forever grateful for my second chance at life. Best wishes to everyone battling this horrific disease.
Thank you for sharing, I live in Mexico and will check it out
I got diagnosed with MS 1 week ago. I'm 31 with 2 young boys, thank you I needed it.
I have MS too! Follow my journey ! You got this!
Exercise, eat healthy, and embrace each second with your littles😊.
You need a methylmalonic acid test to see if your tissue level B12 is low. A regular B12 blood test won't show the tissue level, you need the M acid test. When this acid becomes elevated due to low tissue level B12, it dissolves the myelin sheaths from the nerves and is often misdiagnosed as MS. You might have a genetic defect where you can't absorb B12 and will need monthly injections. Once the B12 is restored to normal levels the body will repair most of the myelin sheaths within 2 years. Good luck
Am the same man 33 yo two young boys and getting diagnosed now
I'm in the hospital now and waiting for a diagnose. I'm also 46 y.o.
I am in the process of getting an MS diagnosis. I’m so lucky to be in the UK where treatment is free. I feel for people who have to stop at medical bills.
I have been diagnosed for 10 years this year, we are lucky that we have the NHS. I really believe that a positive state of mind is half the battle. I wish you all the best with it.
The problem is not how and who pays the bills . The problem is medicines are useless and no cure anyone gets. A small note, all ms patients who are on wheelchairs are taking medicine.
I am a U.S. citizen and I’ve had to save up for six months to afford the initial MRI which isn’t covered by insurance. And, it’s been five months since I applied for disability benefits, still waiting to hear!
I got diagnosed 2 weeks after my 20th birthday. It’s been 2 years and I’m still grieving every day.
Wanna talk about it? PWMS here too
🙏 praying for you❤️
I got diagnosed when I was 18, 10 years ago) And I keep going, I'm still in good condition (EDSS = 1.0). Everything is going to be great, live your life and feel positive!
SAME!
Anyone have the fear of other people watching you limp and so you walk even worse? 😔
Everyone's MS journey is different. You can't look at other people's experience and make assumptions about your own health. Best wishes for everyone who has a MS diagnosis. Keep healthy and keep fighting. I am so lucky to live in Australia where my medications are free.
Every day we show up we are winning.
At my lowest times this is where I come
you are my hero. I have watched this over 40 times. f ms. you go girl. all power to you.
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
With or without MS, we do not know when we will die. It’s best to live life and appreciate living every single day.
I’m so glad I made it here. This disease is so unpredictable . When I’m not experiencing symptoms really I feel hopefully, then when they occur I think is this it? Is this where I’m going to lose my ability to move my arm completely? So much uncertainty BUT this speech was so empowering. KEEP FIGHTING!
I was diagnosed in 2016, but my symptoms started in 2013. It takes so long just to get a diagnosis. It started with my left thigh going numb while walking and running. Then i woke up one morning and could not see good. I just wanted a reason for this it took so long. My vision got better with treatments my thigh isn't numb anymore. you wake up every morning and dont know what your condition is going to be like today. Heat and stress is my major things that bring on my attacks. When i was first diagnosed i was grateful for the answer and wanted treatment. The doctor was so surprised i turn down the narcotics. I have a family and ms hasnt slowed me down. I make myself get up some mornings, but i think my health could be worse. I am not dying and if you watch what brings on your attacks and take care of yourself you can live normal and just as long. it just depends on the type you have and if you are health conscious. When people find out i have it its like "oh im so sorry". Thats why i dont tell many people I say dont feel sorry for me it could be worse. My doctor does research and im on a clinical trial they watch my health really closely and so far no attacks in over 2 years. I couldnt walk the drunk test before I started now i can i was having the balance issues now i dont that was so embarrassing i would always make sure i had a shopping cart to hang on too. The spinal taps arent fun but i have done them with no calm down meds. Im in this trial because i want to make a difference I want to help people like me and future generations. i just dont get in the heat and am very aware of stress. Dont think its the end of the world and never give up.
You are amazing. I’m going to pray for your continued life with no flares and only happy times going forward! You aren’t alone, I appreciate what you are doing - you deserve the world and more, keep pushing ❤️❤️❤️
Thanks, I needed to hear this. I was diagnosed 2 weeks ago.
I hope your trial continues going well for you. I hope you don't mind me asking but what is the name of the clinical trial you are currently partaking in?
was just diagnosed and trying to choose a treatment. If you do t nine me asking what is the name of your treatment ? I'm just at beginning stages and have a feeling of not feeling grounded and pins needles..and sometimes a sensations of a feather like tickle brushing across me. Please. advise.
My dad has MS and I’m here searching for anything to be able to help him 🥺 I love him so much and I’m afraid he’s giving up on himself and it’s devastating ! I hope I can get better knowledge and insight so I can try and help my dad 🥺 if any one has any advise or things that help them in their everyday life please share with me , thank you so much and I’m sending healing light and energy to each and everyone reading this !
Same here!! My dad got diagnosed about 2 years ago.. message me if you need someone to talk to😊
Look into Overcoming Multiple Sclerosis! Dr. George Jelinek's program. They have a facebook page.
Your dad needs to have a methylmalonic acid test, which will show his tissue level B12. When B12 gets low at the tissue level it causes this acid to elevate and it eats the myelin sheaths from the nerves. A normal B12 blood test won't show the tissue level, you need the methylmalonic acid test. Once the B12 is restored to normal, the body will heal the damaged myelin sheaths in around 2 years.
I have PPMS my main symptom is drop foot. so hard to walk but I fight for my happiness
I have MS since 2021. I'm a Filipino living in the Philippines where healthcare is far from the US. My neurologist is not covered by my insurance as well as my tests and treatments. I just hope that someday our healthcare will improve. I cry a lot thinking about my future and my family don't understand this disease. They only see it as if I only have a flu or I'm just stressed out. I'm young and I want to have my own family someday but I don't want to be a burden to my future child and husband. I want to keep my balance, I want to keep my ability to walk to continue climbing mountains. Oh how I hate this disease.
Thank you for this inspiring video. I will do my best to live my best life. God bless you all.
Hey hey hope you're doing well!
I can't relate to MS, but had chronic disease myself. What our current medicine systems tends to oversea about chronic disease is that unlike what they are suggesting that the body attacks itself, is that most underlying cause of chronic disease is an parasatic infection either in case of worms, bacteria, viruses. Science itself estimates there to be around 300000 different parasitic infections that the human body can have, meanwhile they are only testing for around 30 -50 variety of species. So this is largely overlooked in our society. These infections can release toxins in the body to which the body reacts and thus the name autoimmune starts to pop up. To boost your immune and combat infections defenitely recommend: cellery juice, vegan, glutenfree diet, no processed food, no sugar. Also sprouted lentils and beans could be a great addition to build back good bacteria ! I have had IBS syndrome and intense emotions/cravings aswell as constant teeth grinding and trembling of the jaw and by following this diet i have been able to greatly reduce my symptoms to the point they feel non existent. Still following the diet to give my body enough time to build back stronger.
For additional information on the healing process and importance of diet:
Check out: medical medium
gutfeelers
livingdiseasefree ( she suffered from MS herself, but cured it as the underlaying cause was parasitic)
Much love, peace and many blessing on your healing journey💛✌🙏
I am newly diagnosed and this is so inspirational. Thank you!
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
Robin, I loved listening to your talk. I was dx with MS almost 21 years ago when I was 20. I have learned so much about life and my inner strength while living with MS. I totally agree that staying positive is important as well as exercise and nutrition! Thank you for sharing your story. 🧡
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
I was diagnosed 1yr ago. It sucks that we have this. So thankful for you speaking, encouraging, and letting me know I'm not alone!!!
I was diagnosed a little over 18 years ago but my health has gone downhill VERY rapidly in the last 3 years. I can honestly say that this is the first talk that I have seen that makes me feel better. I'm lucky to have a wonderful husband and family that would do anything for me. However, I still get depressed about everything I have to deal with so I'm very glad I listened to this video!
Loved your attitude towards MS, having MS myself for over 23 years has caused me to appreciate life more than ever . We all have ups and downs, but bouncing back and realizing this life is short helps to maintain a positive attitude on what is out there for us to embrace. GOD bless you and hope to see more of what you have to say.
I don't have MS but chronic asthma and it has turned my world upside down this video was definitely the encouragement I needed ❤️
Thank you for sharing your MS journey...you have inspired me to tell my story in front of everyone and honestly I feel very good. This definitely has given me the confidence that I needed and made me capable enough to start my own channel, I wanna grow with you all and proud to call myself a MS warrior !!
Robin, this is beautiful. Your are a great spokesperson for those with our disease - Thank you
Thank you for being so courageous! What an example you are to your teenagers and to us all! I have a dear friend with MS, and I want to know how best to come alongside her! You've helped me more than you can know! Blessings to you and your family! 💜💜💜
I am so grateful that my insurance covered all of my medicine and tests through this journey. I realize that I've never let myself mourn over this diagnosis. I spent the whole summer of 2020 undergoing tests while battling relapses. This wasn't the diagnosis I wanted but this video brought me closer to peace. I feel better knowing that we're all battling together and that we got this.
thuhyan we got this ✌️☺️
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
I may have MS. My neurologist appointment is tomorrow, and I'm nervous but ready for whatever comes my way. This TED talk made me cry however because I had been "woe is me". But whatever is going on with me isn't a losing battle, just a new way of living life for me. I don't know what the diagnosis will be. Could be temporary and curable. Could be life long. But whateve it is, I'm ready to fight for myself.
@Robin Brockelsby Thank you so much! Your words here and on this Ted Talk have given me so much hope and courage!!
i just read this comment. how are you?
@Shan Bee how are you today ?
@@ketamukhraneli9268 Hey, thanks for asking! it's not MS according to my Brain MRI. But I'm still dealing with all the symptoms. Seeing a new neuro in Feb that specailizes in many different neuro and movement conditions.
@@chinwendutony3326 Hey, thanks for asking! it's not MS according to my Brain MRI. But I'm still dealing with all the symptoms. Seeing a new neuro in Feb that specailizes in many different neuro and movement conditions.
I was diagnosed 2 days ago, randomly don’t have any of the symptoms but my MRI confirmed it, this really helped me as I go through how the rest of my life could be.....just turned 23 never thought I would be where I am with this diagnoses
❤❤❤
Thank you for leaving MS sufferers with the hope that longevity is not as bad as told. The harder part of MS is that people appear fine when they are actually internally suffering. for this reason they are dismissed and ignored and even blamed for the illness. Changing eating habits is a major contributor to coping better with MS. People this can change your life: consume raw green leafy produce, avoid sugar, starches and meats at all cost; drink lots of water and move, breath, pray or meditate, these new ways are life-changing but worth the effort. To your health!
I'm scared , but now I know I'm not alone thank you .. I loved how you expressed your anger towards your immune system .. I'm angerry but I will survive and never give up
I definitely will make use of my tool belt ☺️
Thank you ❤️
I have cried, laughed and cheered during this amazing talk Im newly diagnosed and have adopted this attitude as its the only choice we have thank you 😘💝
You lady made my day. I have been recently diagnosed with MS and am still on my way of accepting it. I can't really tell how I feel, I just don't know what challenges life would bring me in future. How I am going to reschedule my daily routine, how it will affect my work and overall quality of life, it still beats me. But your positive share of thoughts makes me feel happy to the fact that I am still alive and not hopeless, that I am still capable of achievements. It is really emotional for me at the moment to have experienced the diagnosis, and your example has tremendously cheered me up. Today I have agreed with the doctors to be signed on a treatment programme that should help me maintain my health. That makes me hopeful. Thank you sincerely for your inspiring speech. I can't tell you enough how much I needed that
This video is a Good vibes. I’m with this MS since 2 years now ,completely imbalance total collapse.the best thing that happened is I delivered a boy baby .with this multiple sclerosis I was so worried but finally I got pregnant and now healthy baby is delivered.this is my victory against this multiple sclerosis .thank god thank u so much for the love you shower on me
Hey..how are you now u need help.. please reply
What help
Thank you for your energy and clarity. My brain/cog fog/word finding issues because of MS are so bad that I gave up public speaking. Dx at 48 10 yrs in and happy to have aggressive treatment to "save my brain".
Great talk and simple explanation of MS outsiders can understand without trying. Resistance is futile, acceptance is the best way forward. Embracing this insidious dx is my superpower. It prompts me to learn and laugh. And not just about MS. Ruminating on the future wastes the present. No one gets out of here alive.
Thank you for your inspiring story that you shared with us. I myself living in Europe (thankfully we do not worry about our health-bills, since it is funded through taxes) am suffering from PPMS. After getting the diagnosis I went through the same thoughts you went through. It took and still takes a lot of effort to accept this disease. I am only 45 and have still a whole life before me. I am of the opinion that our stay on earth is a gift and we should make the best of it. I try to carry on the life as it was before the diagnoses. Thinking positive in not giving up the battle gives me the strength to go on and being happy.
This really helped me out so much. My name is Dawn. I'm writing from my boyfriend's youtube page, and am helping him understand also what I'm going through with my ms. It's not only my battle in life. It's our battle together. He is truly a gift from god! Our love is so strong as ONE!
good luck
I was Dx 1996. Still walking (albeit w/ a cane/rollator), still working-on and believing or knowing that I am going to Heal completely and reclaim lost functioning *faith*. You got this!
Loved it, and great that MS is getting more visibility. But even when people are giving visibility to MS I feel left out.
I have Primary Progressive MS. It has nothing invisible to the world, but I do feel invisible in the MS community.
Would appreciate that even in a great personal experience exposition like this it would be mentioned that other more aggressive forms of MS exist.
I'll pray for your health
Robin, if you see this-Thank you for sharing your story. Your layman description of this terrible disease was concise and comprehensive. More people need to be aware of how MS impacts your cognitive process. Take care of yourself!
You 14:28 r Amazing!! I am 47 years old and I was diagnosed with M.S. in 2010 relapse remitting. It was a complete Surprise for me when I was diagnosed, being that from the age of 2 I was a gymnast, and from 2nd grade all the way through high-school I cheered the I became a competition coach for both. I try to remain positive, but it's hard. M.S. is incredibly painful. Thank you for sharing your story.
Stay Strong,
Heather Buszka 14:28
Super inspiring Robin. I'm a Medical Doctor but this is the most simplified presentation on MS I've ever heard and the most motivating I must say. Just amazing. Keep on with the good job.
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
very good to listen to her speak. My daughter was diagnosed with MS just recently so it is a big adjustment and coming to terms with things. AS with serious health conditions you do not have awareness or understand till things are closer to home.
She is very honest and so strong being able to cope living life. I am happy that she has and continues to overcome this.
Everyday I fight my disease it's a challenge but I continue to stay strong and battle with it.
Thank you for this! So helpful for me and I'm sure for others.
I wish I could tell her how much this video uplifts me on my really bad days. I can't even count how many times I've watched this.
Thank you Tatiana. We all need to be there to lift each other up on the tough days.
Just got diagnosed and I want to say thank you for the honesty
Really well done! Your description of this disease is great. I love your attitude. We have to stay positive.
I was diagnosed at 17, now I am 20 with PPMS
Really u r a ms star!!!
Loved every word...so inspiring n encouraging!!
Thanks for sharing!!!
Robin, u r a very fine lady. You will definitely live a very happy n satisfying life.👏👏👏👏👏
My doctor told me today about this Ted Talk with Robin I have MS and as she said it's really hard. One thing she said I did like I live one day at a time, and today I'm also feeling great!
This lady is really inspiring!!! There should definitely be more ted talks on this.
Agreed
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
This was so good. Thank you for your honesty.
You are a super star. Thank you for sharing this much important story!! Love you, lady!!
Speechless and emotional. I was diagnosed with MS in 2017 and everyday has been a struggle since.
Please share your details ma'am 🙏
I would like to hear your story in detail and understand my condition better to improve it.
More strength to you and family 👍
Newly diagnosed , extremely grieving , and very emotional .
Get a methylmalonic acid test, which will show if your tissue level of B12 is low. This acid elevates when B12 gets low at the tissue level and dissolves the myelin sheaths from the nerves. It's often misdiagnosed as MS. You might have a genetic defect where you can't absorb B12 and will require monthly injections. A normal B12 blood test won't show the tissue level, the M acid test is what you need. Good luck
Well said and beautifully delivered. I too, try to find the good while living with this disease. A positive attitude paired with an unbreakable strong will is my path forward.
I want know do people die of his what is this can you please tell me
@@debrarosas4753 You cannot directly die from it, but it can cause other complications which could kill you.
i was 48 when i was dx 2010 i dont take anything for my ms i do have damage on my right side thats why i joined the ms fitness challenge gym on fb it has help me get stronger and I ALWAYS SAY NO MATTER WHAT IM GOING TO LIVE MY BEST LIFE . and I DONT WORRY ABOUT WHAT I CANT DO I THANK GOD FOR WHAT I CAN DO .love april
Lupus warrior/survive/thriver here and I am almost always able to pull myself out of the dark depression/struggles by reminding myself to: 1. Love my life more than I hate the pain; and 2. Do not let what I am unable to do interfere with what I CAN do.
Sometimes, like in the midst of a severe flare, the silly, emotional side of my brain needs a little more convincing so I will think of things I am grateful for that make me super happy and content, which is coincidentally one of the only things I can do during the big flare that makes my skin crack from 16+ lbs of water weight in one day and my head feels like it's in the dog while riding a merry-go-round lol
But yes, any and everything/any and everybody from my son to my fur kids to the smell of winter coming in or spring blooming and books set in medieval times goes on the list, or at least gets visualized in my head. 9 times out of 10 this at least brings me back to a more rational yet self compassionate mindset and oh my gods what a difference it makes!
This turned out way longer than I thought it would be but hopefully it is helpful, even if its simply knowing all of us in the chronic illness world are all in this together, supporting and loving each other through it all! Sending so much love and some extra spoons!! 💜🧡 purple and orange - lupus and MS awareness colors 👑
YEEEEEES that is so true
Hahah just saw typo of head feels like it's I'm the dog 😂 meant "in the fog"
Thank you for the story and words of inspiration! I myself was diagnosed 2 years ago and it has been a similar journey to the story shared. Main thing that helped me was the diet and attitude change. Being diagnosed with MS can be freighting, but it can be rewarding in getting a better appreciation for life. Thank you again for the talk and presentation. well spoken and inspiring!
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
What diet do you follow?
@@annmariemoreno3904 keto / paleo diet :)
She said everything I am feeling. Thank you! Great Ted Talk.
I'm glad you were able to get a doctor to do all those tests. It's so hard to find good doctors these days, I'm in the fight now 😔
You need to do the keto diet asap. I recommend you to wach Dr Eric Berg's youtube channel. He has a video on ms and als and its relationship with the keto diet. He has a video on where it is like what he would does if he had ms and he said he would go straight to the keto diet
Her story is mine😥😥 i was just diagnosed and iam bawling. Word for word she gas said everything i feel. Ty for your story. Sylvia from texas
Doing your disease , your best partner . MS is like my alarm when I forget taking care of myself .
Thank you so much Robin! I am diagnosed with MS from 5 years now, every year there's something new coming up. But I still feel I'm so blessed that my episodes are not too severe. Right positive attitude, exercise and healthy diet will minimise your symptoms, out of my personal experience. This video was very inspiring thank you so much 🙏🏼❤️
I had my Stem Cell Transplant at 53. I am in Remission & Grateful. Your life is Definitely not over!!! Eat Well, Sleep well, DREAM Big. Love, Janet. My Son (21) has been with me through the Stem Cell Transplant. Just for me, "it was easy", I was grateful for this Option for all of us to review.
This is my life every day. What a well spoken Talk. 💥💛
I also have MS I was diagnosed in 2008. I needed this. I have never taken meds for this disease. Life is very hard but I try my best to push through. Thank you for the reinforcement.
How may I ask are you finding your daily routine?
Do you feel not talking meds made it worse?
I was diagnosed with RRMS in 1997 and then SPMS in 2018 I have been bedridden since 2020 and I don't know what to do but I'm grateful and optimistic every single day "NOW".
Bless you this is so relatable and I appreciate you so much. Stay strong.