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Wish all ALS doctors were as open minded and practical and Dr Bedlack.

I always say that everyone has their own version of ALS. My mother had sporadic bulbar onset and had it for almost two years. She passed before my eyes on Dec 27, 2011. 😢

dude looks like he's wearing a disguise

For the last 7 years, I've been experiencing health anxiety about different diseases. Recently, I feel like I'm having trouble speaking, but no one around me, including my wife, notices anything different. I'm convinced I have ALS and have started showing symptoms. Seven months ago, I thought I had a brain tumor and got an MRI, which was normal. I keep searching online about ALS and now genuinely feel I have it. I've had similar anxieties about other diseases over the years and have seen many doctors with normal reports. I'm 40 years old and from India. What should I do? Please help me.

Excellent video🥰

nice video🥰🥰🥰

My mom suffered from cidp and dementia. I am so angry at myself for all the times I lost my temper. I feel nothing but sadness and regret. I was proud I was a caregiver but I’m so disappointed in myself.

Hi, I'm in Australia and have recently watched an advert for clothing that uses magnets in place of buttons for those who are challenged doing buttons ( shirts, blouses ).

An A$$ social worker telling me how to die...what a joke and a horses a$$. When you get hit with this diagnosis come back then and I'll still think you're a dumb@$$. You can ask me I can tell you if you like.

Consume essential fatty acids. I think Medical over-complicates.

We do try to be funny, joke around, be in the moment and to find laughter where we can get it. We also change things up, so it doesn't get repetitive especially in physical therapy. Used it in hubby's chemo treatments from his colon cancer. Once we both had our big cry and head shaved, we decided we are going to conquer this come hell or high water. It worked. Cancer free since 2012.

How will that work if someone has stage 3-4 heart failure and defib. Implant and told to lose 30-40 lbs to prevent more strain on the heart? My hubby, who has the IBM VCP MUTATION neuromuscular disease has been losing muscle bulk for a while now and overall weight and not trying to lose weight. Blood counts and other tests or clinical are good besides the long time creatinine always being low.

Im having a challenging time feeding my father, this was helpful, thanks

Dr. Bedlack is a wonderful and compassionate doctor. He diagnosed my mother with ALS after many misdiagnosis from other hospitals/doctors. He gave her 6 months to live and he was spot on correct. He wears bright suits to bring a smile to patients, because the disease is fatal and will take everything from you. Don’t believe BS about diets, covid shots, vitamins, the disease will kill you. A ventilator is the only thing that’s will help you live longer. Truth hurts, I lived it.

How do l tighten up my foot plates..my left one is loose on a vision ultra power chair?

I have insomnia and don’t sleep more than 3 hours a night. I need to figure out how to charge it the rest of the time.

Please help: I’ve been taking spirulina supplements for a while which is considered a blue-green algae and just read into it that it may contain BMAA… I’m scared it’s gonna cause nerve diseases. I had a scare because I started to get muscle twitches everywhere and nerve pains and unexplained nerve issues. I went to the hospital a few times and did tests and they said I don’t have to worry about ALS or MS but this started happening after I started taking spirulina supplements which I have now stopped… will this eventually build up and lead to a neurodegenerative even after I stop taking it or only a high toxicity will cause conditions like ALS? Please help!

This made my Dad’s liver enzymes go way out of whack, and he had to stop the medication 😢

I have been diagnosed with cervical spondiltic myelopathy. Next week I am scheduled for an EMG with nerve conduction to rule out MND.I have episodes of extreme weakness and complete loss of Rom.I cannot use my hands or lift my arms. As soon as I get prescribed steroids I improved.This has been an ongoing pattern with me since August of 2023.The neurologist giving me the EMG said she would not prescribe steroids.I just know that the Prednisone works for what I'm diagnosed y at this time.CSM is an ALS mimic. Steroids are cheap guess there's not enough money to be made have.

My husband has a quantum edge power wheelchair. We can’t afford a conversion van. I am currently driving a 2017 Dodge grand caravan. Could you suggest any trailers that might work to transport his wheelchair behind the car? Thanks

Thank you for making this.

I have als. My symptoms started 1 year ago. I've had 4 bad falls that resulted in traumatic brain injuries. The falls caused my symptoms to go from initial temporary transitory pain in my hands, and feet. After the first fall, my right hand and arm experienced muscle atrophy, and an extreme case of foot drop in the right leg. My dr sent me to get an mri to test for stroke. With bo signs of a stroke my dr sent me to see an orthopedic surgeon. After being misdiagnosed and referred to numerous doctors, not one dr could accurately diagnose my condition. The last orthopedic surgeon diagnosed cervical stenosis with myleopathy and radicuopathy at c5/c6. He referred me to standford to see the orthopedic surgeon and a dr for als/ms. The orthopedic surgeon agreed with the cervical stenosis diagnosis. Before i saw that dr, i had another bad fall that resulted in a fracture in my right hand which resulted in total loss of use and movement in the right hand, an even worse case of drop foot in the right foot, muscle atrophy in the left hand, and a beginning case of foot drop in the left foot. I had surgery to fix the problems with my c5/c6 vertebrae. Immediately the numbness in my right hand and foot subsided. Last week i returned to see the als dr and after blood tests and nerve conduction and emg tests the dr diagnosed me with als. Can the falls with traumatic brain injuries hasten the onset of symptoms? Can the prevention of further traumatic brain injuries slow the progression of symptoms?

What a new treatment please tell me als mnd IAM young girl moon from Quetta Pakistan

Thank you for the information.

Oh my word. Appalling way to hear about the diagnosis. Appalling.

Can you explain how it can be rewarding? I hope this doesn't sound bad. I don't see a reward because I can't save my mom from depression or fear or anything. I don't feel like I'm helping make her lfe easier at all. I just feel like a companion. Maybe it's because I am in the grieving stage? I don't know. But she is absolutely worth whatever it takes. No exhaustion is greater than my desire to care for her.

I drive a senior citizen's mobile and I regularly had problems with the gel batteries. They only lasted 6 months for me, the longest lasted 2 years and they were ones from the manufacturer of the vehicle. Three years ago I bought a newer 2019 model and 200 amp AGM batteries and since then I have had no problems. I ran them down to half and then recharged them overnight. I have to say, no problems at all. I'm excited to see how long they last. I drive the mobile because I have no other way of getting out of here. I'm not allowed to use public transport. (For safety reasons) I have to rely on it because of my disability! I don't know much about lithium batteries. Some people say this, others say that. I always have to drive uphill a lot, even in winter, so I weigh up which journey is important.

You are an amazing woman Lori for your fierce, driven ALS advocacy. I truly thank you for that. I am happy your husband is slow in his progression too. It's amazing to think that all who have ALS with sporadic or familial do similar protocols, but some turn the corner to modest change for the better while others have no change and further progression. I have had 3 years of this with hands, and now foot drop, but think we are in a great time to see a cure actually materialize with the help of people like you. Let's beat this in our lifetime.

For God’s sake let there be more clinical trials for SPORADIC BULBAR ALS. Covid vaccine or statins triggers?? Cruelest disease of all.

I don’t see the fun of it. That, coming from a profesional? I wonder if her mom had ALS if she would be laughing about the way her mom speaks.

So I was doing a carnivore diet for 3 years and my thumb started twitching on my left hand uncontrollably for hours 😢 and my first thought was ALS, I didn’t go to see a doctor but then I was thinking that I was probably mineral/ electrolyte deficient and I started introducing carbohydrate in my diet and the twitching went away after 3 weeks

Impressive!!

i was diagnosed 2 weeks ago. still wrapping my head around what is happening. i see so many said it was hell, terrible death, hellish death.... what makes it so? what makes it different hell than dying from cancer? i need to know.

I am at a crossroads of being concerned or not. My first visit to the neurologist she mentioned ALS, but said she thinks it's probably benign fasciculation. Okay...so even though I then looked up ALS, and was horrified, I decided maybe she accidentally spoke outloud before making sure it might be a possibility. I had an EMG, she found a little something, but still opted for BFS. After second EMG and increased fasciculations, she gave me options of larger research facilities for a second opinion as well as PT to increase lower strength. No MRI though, my last for my brain was years ago... Now I am concerned. If she thought it was benign why send me 4 hours away? Is that normal? Why not a fellow neurologist in her own office? It is very difficult not to research anything, especially now, and I have more questions than answers.

my new dr gave me diagnosis a week ago. at end of one hour appt i said is it MS? she looked down and said "not MS, is ALS...and here's the plan" so i didn't really have time to react. i said where's the lab? and i hugged her. she said she loved when her patients hug her. and we went on our ways.

I am concerned I have ALS - I have a lot of muscle twitching all over my body but only lasts seconds each time and I noticed I lost pain in my upper left shoulder- I’ve always had a lot of pain here and my lower back but all of a sudden, I can’t feel the pain anymore and when I stretch, I don’t feel my neck tendon or the stretch… I am very concerned. Did another lose feelings in a muscle? Like you lost pain that you used to have?

Ecclesiastes 9:10 wipe down all water each time I use my chair, with a cheap power chair, with 2 Acid filled Nano acid sealed 12 volt 20 amp batteries, dont see, my batteries on Y. T. The 2:28 Interceptor 2 non spillable Acid sealed NANO - Silica Type NB12,200 High Performance 12 volt - 20 A h. two batteries got here in mobile Alabama from a Unit-d Heal-h did, pay for it, but, if I drive 7 blocks both ways to a stores, it does, take, 2 hours, to recharge, my charger box say's it is a 5 amp. Charger, but the back of the charger it self, says, even, better, a 2.5 amp. Charger is, better, slower charge, is best, a deeper charge, so a 2.5 amp. Charger for Two, Interceptor.2. Acid. Batteries, and, chair, was, made in December of 2023, so batteries sat in a container ship, in heat for weeks, so I wanted new, best Acid filled, 12 volts 20 amp battery. ? In mobile Alabama, which Acid sealed Batteries are best quality ? For a PRIDE, MED Power Chair, ?

Yes my father in law had trouble swallowing. After diagnosis he definitely had the mouth secretions spit and the oxygen mask until it could not be used anymore. Two years after diagnosis at age 67 never made it to the wonderful retirement he was hoping for after putting six kids through college paid for it too. He was a father that was there for for his kids and family. The classic dad that could fix things but could clean a no d worked in corporate life but was home on weekends and enjoyed time with his family

How many ALS nurses could learn from this video……?

My twin actually did rebound! She was able to hike 6 miles and balance on one leg for a yoga pose! Suddenly she was looking so much better! That was in August 2019. By November 2019, she was having trouble even walking without someone taking her arm and showed me one thigh muscle gone on one leg and the calf muscle gone on the other leg! She laughed and said that it was why she was having trouble walking! By Dec 2023, she was bedridden and using a walker for just going to the bathroom! I told them to get a wheelchair and although they did not at first...a few weeks later they had to! I made her full length bibs with my sewing machine with huge pockets at the hem, She at first laughed at this but then...a few weeks later she needed it! Told me it was amazing to have them. She went from that hike in August to dying in a hospital just 10 months later!

Hi, what about those test tribes now?

I’m sorry

Can you drive the wheelchair using a mobile phone By connecting to Bluetooth

Can you lift the wheelchair using a HOIST attaching the Hoist bent hooks to the standard transit hooks Also can the Backseat be folded For transporting in SUV or MPV

But it doesn’t work, does it?

Hello, Dr. Bedlack. I would like to meet you, if possible - my name is Renae Stevenson. I have been diagnosed with Cauda Equina Syndrome (OHSU - in 2010, 14 years ago), but my body is going doing hill rapidly it would appear - can hardly walk and no real / true understanding as to why (many tests). I am progressively getting worse and think i may have wrong diagnosis, but not sure. My little body is giving out on me (frighteningly so) and I am wondering if you might be doing clinical tests (?) This is a highly personal message and if I do not hear from you within 2 weeks, I will remove post. Thank you. Renae.

how is it legal for those who are supposed to treat us and lend into betterment of each person lend into persecution of each person

I'm on a VOCSN ventilator, and I can put two saline bullets into the nebulizer, have it sitting upright like you're suppose to do, and it takes over 30 minutes to deliver the medications into my lungs! I didn't get coverage for the Aerogen Nebulizer, and I hate those aquarium sounding nebulizers, they don't perform well, but why does it take so long for the nebulizer to deliver my Saline?

Does Cervical sponlitic Myelopathy become as bad as ALS?