Top 10 Reasons Friends and Family Don't Understand Your MS
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- Опубликовано: 22 окт 2023
- In this video, I share the top 10 Reasons Friends and Family Don't Understand Your MS.
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I have rrms 45 years old since I was 21. Dr b
Not only am I dealing with Ms. But also sarcoidosis. And musculoskeletal. Disorders.
I wish I could come see you Dr Boster. I'm in Indiana. I don't feel like I'm getting the help I should.
Winnie from South Africa, De Aar. THANK YOU FOR YOUR VIDEOS! I am 71 years, Progressive MS and still moving. Husband in a wheel chair, so, l have to keep moving. Lucky l can still use my car and do my shopping. I walk with a three wheel pusher. Have one in the car and one for the house. I went on estrogen pills since l was 33 years old because of moodswings. I had 3 back operations because l fell and luckily still have strong bones. I think its got something to do with the estrogen l take. Got my blackbelt in JKA karate at 40. Was diagnosed with MS at about age 52 years. The betaFeron injections made me sick, so l stopped and felt much better since. Thank you again for your videos. Just take painpills and supplements.❤❤❤❤❤❤
This needs to be explained to te department of Social Services and social security.
Every time I get those forms from SS or disability I just want to send back a note saying….STILL HAVE IT, GONNA HAVE FOREVER
Agree 100%
I agree. There are no programs to help with battling this lifelong disease. I wish there were. Even if it was only a program to lower the cost of medications, that would be helpful. There are programs through some pharmaceutical companies, but even their pockets aren’t deep enough to help everyone.
I agree
@andreacomiskey2249 Nothing made me sicker than the disability process. The stress made my MS ten times worse, and the nonchalance when finally in front of a judge made me feel absolutely insane. Who is lobbying for us in this broken government? I wish I could say the MS Society... but so far, patients have done way more for them than they've done for patients. If they send me another outdated pamphlet when what we need are *current* resources...I'm going to scream.
One day I’m able to clean the kitchen, although it took me the strength of an army that no one can see and the next day I’m asking for someone to get my ice water because I have no strength. Outwardly I look the same on both days. 😒
I think another reason many don’t know anyone else with MS is because so many don’t talk about it, I have been shocked by how many people don’t even tell family and friends they have it! I try to educate people as much as possible, including strangers when they question why I’m using a handicap spot or motorized shopping cart. The more those of us use our voices to share about MS the better!😊💗
I know, right? I can't believe people stay in the MS closet
I have MS it’s been almost 4 years since diagnosis. I want people to know it just not natural for me to tell people with out them asking. I been one person my whole life and me with MS is a whole new person.
You speak true. I can walk, but I recently tried to push a shopping cart in a grocery store and literally ended up on the ground vomiting and unable to get back to my vehicle. People are constantly telling me that I look like I’m doing so well. They would never know that I have MS. Yet… I am calling for my husband to come get me because the store didn’t have an available scooter and I am too stubborn to give up. I say I called him, but that’s not true. I couldn’t even do that. A stranger had to use my phone.
Looking like you don’t need a handicap parking spot is so frustrating. I am grateful to not need a wheelchair, but it is so frustrating that society thinks that means you don’t deserve accommodations.
I am luck-ish. My cousin married a man who had ms, so was kind of prepared.
My Dr fat shamed me for two years. Also the sideline of mental illness. Now I have a new Dr but all the people in the store just see a fat guy using the motorized cart for handicap people.
There are a lot of doctors that don’t believe that MS causes pain. It makes it very hard for the patients to get good answers from their own doctors. It’s very frustrating.
I hate the fluctuations. It switches so quickly some days
The fluctuations are probably the hardest concept to grasp. One minute I look "normal" and the next I am in a bed unable to open my eyes. It's like my body just said "done". These fluctuations make some people look at us skeptically. Is she faking the disease? Such a drama queen. 🙄
Its difficult to plan anything with people. I can feel great and ready to be socially involved. Then the day comes and I can barely sit up, let alone be present and pleasant to be around. I feel myself retreating away from those things more and more, but I also get invited less and less. I wish I could make everyone understand. 😢
Я вас понимаю, т.к. у меня тоже РС. А мужу я практически каждый день что-то напоминаю. Человек по своей природе думает только о себе и с инвалидом жить ему не комфортно. Это природа такая у человека. Иначе он бы не выжил в этом мире. Даже пьют люди из-за того, чтобы сделать реальность получше.
I just wish my wife understood fatigue days. 😩 She's pretty much has said stuff to the point of "You're just being lazy," or "playing the victim," or "quit blaming your ms."
I get that from my mom and younger sister, who's favorite line to me is, "just don't think about it."
Sorry mate that sucks! Dr Boster has some awesome videos on MS fatigue- maybe she could watch a couple?
That’s sad I know all about fatigue it definitely exists in MS. You are not Lazy
I don’t understand my ms fatigue let alone others
Sounds like I’m not alone. 🤓
Even after 10 years with this MS still trying to explain or re-explain my issues.
Oh dear...
I hear ya. Me too. I get SICK of re-explaining....over and over and over.
Same is the case of mine..# MS patient frm 10+ years
My son had MS and my mom had heart disease. Both are so invisible, not like a broken arm in a cast, that people don't realize or recognize how fragile these people can be. Their needs are real and fluctuating and their friends and family tend to overlook that part, expecting much more from them than they can give because they "look well."
I know that before my unfortunate journey down this path, I was just as ignorant. I tell my wife that she doesn't know how I feel and I hope she never does.
Anyone else out there whose's tired of hearing upon meeting someone "you don't look so bad to me ?"😢
Even people who are suppose to medically knowledgeable, like a medical school or a medical job, don’t understand. I suppose people with MS aren’t made for med school. It’s sad and frustrating.
How can I/ we express this weirdness, if we can't even wrap our own heads around it??
It changes every day.
So much weirdness, strange feelings....
Takes a warrior to live with this.
I always hear “but you look really good” and “you’ll be fine, you’re a strong person “ . Folks mean we’ll, but…
This video should be liked and shared with friends and family over the globe. ❤🙏🏽 Thank you doc!
I find that humor is the best way to deal with others. Mostly I keep that humor inside just for me, outwardly I just look at them and drool a little. 🤤
Just diagnosed three months ago and I am 41yo, currently on Kesimpta and my neurologist is very happy with how the this medicine work.. but I am do depressed. I am very depressed... I am not the person that I was a year ago.. today I had to leave my job early as all of sudden my bladder started getting spasm and painful.. the real wealth of our lives is the health without even knowing it
When I went in for my second infusion I got questions about why I needed medicine again. I don't think many people realize just how long "lifelong" really is! But I also had never even heard of MS prior to being diagnosed myself so I can't be upset if people don't get it.
I've been lucky, most everyone I deal with knows someone with MS, or understands the disease. The only person I knew who could not understand was a doctor . Of course, she wasn't that bright. My husband is slowly realizing how, I can change from moment to moment.
Dr. Boster is a treasure. He really cares about MS being understood by patients and others alike. I, too, have learned more from his videos than my doctors. Please keep up these videos. Blessings to you and your baby dog.❤🎉
It's a rare disease where I am, as I'm at the equator where I live. So many relatives and family members don't understand. Even when I start using my cane regularly, I was asked why do you need a cane? You look normal. My dad, though I love him dearly, would always think there's a natural cure to MS. So I decided to just live life as it is with husband and we understand it better. We manage it, we live with it, we'll find a way to make it through. I had to quit my job as a teacher because my colleagues and admins really didn't like that I'm now disabled. I had to do everything they're supposed to be able to do.
Good morning Dr. Boster! Thanks so much for another great video. All 10 points are spot on. I appreciate you helping us and our village members.
Same to you!
My brother who has MS sent this to our family group chat. Im glad he did this was informative and gave me clearer understanding. Thank you Doctor.
Thanks for all you do for those of us living or dealing with this disease personally as well as all of our families and friends
This is all so true! Non-MSers really don’t get it. I’ve tried to use the Spoon Theory to help my Mom understand something of what I’m going through, but she treats it like a joke😢
Do you think your mom may be in denial. Thinking not accepting the MS will go away
Hi, I am a new MSers. What is the spoon theory?
@@giordanoponetti1120 ruclips.net/video/b5u3PF-ym8A/видео.htmlsi=PmhUBQGMJ7Do20r3
@@giordanoponetti1120It's kind if neat way to explain how you run out of energybas the day goes on. Try googling it. Take care.
@giordanoponetti1120 so the spoons represent energy. So let's say you have, on a good day, 10 spoons. Anytime you have to exert yourself, you lose a minimum of one spoon. On good days you my have a little bit left. On bad days you can be left so depleted that you need a few days to get those spoons back. I hope that helps.🧡
This is a really good educational public service announcement. For those of us w MS and our people, much gratitude to Dr Boster. MS is so confusing and complicated 🧡
Healthcare providers are also confused and can ignore symptoms.
everytime a family member sees me: oo u look so good how is your sickness going
*me feeling like shit: yea sure its going good… bc i hate explaining things over and over again…
Thats why i even distance myself from people, im kinda sick and tired of explaining things i dont even fully understand
And then the worst mother ever keeps bringing up other ppl she knows that have that sickness and compares me to them
I’m in that situation now , so I stopped explaining it. I worked as an emt for 12 yrs , so it’s possible I could have been exposed to something that triggered Ms in me. I had a family member shush me when I was explaining it to her. So it was clear to me, they don’t care, so my peace is to stop explaining anything to them.
I was straight up traumatized that my family didn't recognize and take seriously my very hard relapse in 2020 (one that lead me to take things into my own hands and eventually get diagnosed)
You are so right! MS is just SO different for everyone- which is why i think our family/ friends don’t get it at times. Plus the invisibility of most symptoms.
Absolutely great vid Doc
#Sharingis caring
That's it! You always have the answer Dr.Boster... If only my boyfriend was open minded about my illness, he would listen to your channel and (at least) would try to understand me. But I think he likes to say "hey dont tell me that's ms fault" or "you always put that on ms fault! Now, stand your lazy ass up and come built the new house, we have stuff to do" 😑😑. Sorry, i had to get that off my shoulders. I hope you guys have not the same struggle with them and are surrounded by empathic ppl. ❤
. @isabellepoupoule ✊🏽💯🙏🏽 hopefully you can get your boyfriend,to understand especially about MS fatigue.
And you are still with him??Shame on him
If he really loves you he would at least try to have empathy and help you
Sounds like my wife =/ Sorry you have to go through this. Makes me feel even worse when she does this so I can only imagine how you feel when he does it to you.
Sorry he doesn’t understand. Does he go to dr. appt with you? My hubby always does, I ask him so one of us will remember what dr. said.
I think this is one of your best videos on explaining MS to friends and family. I appreciate that you care enough to put out these videos each week. Thank you!
👍Thanks for all you do. I am more informed by you then my own nero. Dr.
God Bless you 😇 NB Canada
You are right, most people just don't have an understanding of it. Even a lot of doctors.
They may have read or been taught about it, and even prescribe medication for the various symptoms, but you can tell they lack really understanding what someone goes through with this very misunderstood and complex condition.
This is an awesome video Dr. Boster! I watched it 3 times. I love it when you say no two people with MS have the same experiences. It feels like blame when someone compares how one person progresses to another person. We’re all different.
You're so right about the immune system being a complex thing for a lay person to understand. I took an online course to brush up on anatomy and physiology when I was diagnosed, and the module on the immune system felt like learning about a whole other body living alongside the rest of the body. And that's even before trying to understand the interaction with the gut biome!
Great video! I will definitely be saving this so that I can have it handy when someone mentions struggling to help friends & family understand their MS
Hi Dr. Boster!
Number 8 made me cry! Thank you for doing this video.
On Dec. 24 I had to have brain surgery after having a stroke on Dec. 21. One of the doctors there was a Godsend because if he didn’t have the answer he found it. He finally told us after asking multiple doctors that as someone with MS I was 2.7% more likely to have a stroke. That’s all I wanted to know! I know that doesn’t sound like much but when you consider how rare MS is, it is a lot.
I get so tired of hearing “you’re strong”!
It’s nice that someone understands how “different” we are.
Thank you,
Misty
wow THIS IS SO GOOD. I was diagnosed in 2016 but first syptoms disturbing were 2000 (went blind in one eye) later diagnosed with ON. Anyway i have PPMS. slighty different. I do struggle as I dont feel my family truly understand what is going on with me. I feel quite good in the morning very common for me to wake at 4am and my cognivite function is good, and i can walk better usuallly too, but over the day the battery slowly looses power. I am in bed by 5pm, as i have full on body fatigue and cant stand anymore or anything. I am 72. i have care twice a day morning, and lunchtime. i wish my carers understood it too.I wish they would make a bit of time to read up about it.
this is a brilliant video and i am going to share it round to my family. i dont want to have MS i dont want to be like i am but it is what it is. I had EBV about about 5 years i suppose i dont know cant remember before the first strange symptoms started. At the moment i note that i am constantly dropping things with my right hand several times a day but i am more affected left side, so not sure what is going on. Anyway thank you so much for looking out for us. xx from the uk. xx
I also lost partial vision in my left eye this year and my right hand is always cramping and dropping things. Waiting until I can afford to get the MRI to confirm or deny an MS diagnosis. My husband is retired and I can barely work, so we can’t afford the scan, but the longer it goes on, the more worried I become, because I understand there are medications to slow the progress, but I’m not taking them, so…
My dad with MS and sent this to me. Thank you for making this video
No problem!
Thanks for the video Dr. Boster. Even I can not understand my MS sometimes. It is so much complex...
This is a good video. Just the other day someone informed me, regarding my MS, "You're doing great! My aunt is in a wheelchair." I def don't want to be in a wheelchair and I'm grateful that I'm not. This person completely bypassed the jacked-up tremors that are a constant and the increasing difficulty swallowing. A lot of people seem to judge functioning levels by whether you can walk or not. (Except for neurologists, who always get right down to business and ask, "Are you still able to write a check?") (But not you, Dr. Boster- you know I know you're not like the others!) I believe that, as humans, we are all inclined to expect someone who is sick to either get well or die. It's disconcerting for people to be confronted with chronic conditions, even though most of us have at least one. Personally, I'd rather not talk about my health at all as I usually end up being declared "doing great" or being assessed as broken and asked to provide an on-going explanation as to why. Thanks for this- it's comforting just to know that someone gets it.
Do your neurologists also test your ability to send a telegraph?
Wanna hear something wild? My husband and I both have MS. However, our cases are totally different. He’s much more worse off than I am. No one would know I have MS if I didn’t tell them. My husband has had extensive bloodwork and it showed that he has been exposed to Epstein Barr. Since we have been married for 32 years that means I have as well.
Huge help!! I believe this is a great video to share with those who are unaware to the disease. This video is worth more than gold. Thank you for your service Doctor!!
This is a wonderful video to show to friends and family. Thank you!
Yes, you understand, mornings. I can think and remember and talk, after a few hours thats very slow.
Thank you Dr. Boster. You’re the best!
Thanks for all ur fab videos. I just had to quit my job after over 20 years with ms. What to answer when your Departement Manager says: Hope you get better soon 🎉
(yah...hope so too😂)
I wish my family understood why I can't do things like I used to. I'm not being lazy or making excuses. They make me feel like it ain't really that serious. I have a stressful job and they don't realize I don't have much energy left to give when I come home at the end of the day.
Thanks again Dr Boster!! You are amazing as always!!!
Thank you Doctor for your effective and knowledgeable insights to heal MS.
Your are God's own messenger for me.
Be 🙏 well
Thank you for this video I'm definitely going to share it
A big downside is trying to explain your current situation with MS VS the actual condition because you might be feeling fine, or 1 specific way at the moment, but with how sporadic and ever changing the condition is I'm usually reluctant to go into the minutia of the assortment of issues and difficulties i've experienced because it's also cognitively taxing to remember and rattle off gripes and grievances. Cog fog is the real sticker for me. I have found ways to improve or halt much of the symptom except for Cog Fog, and it's been going on for a decade now. I cant really ever have thoughts about one thing, my thoughts are buckshot, It's like i'm raging down a river, a bystander and also incapable of steering. I found much of the time I write, I will actually have to heavily edit the order because I end up writing what should be the last sentence before the first one in a paragraph - somehow, it's shocking even to me.
I pretty much can guarantee that if I say I feel good right now, I will wake up with double vision.
Thank you so much for all of your videos. I've learned so much from you
Since diagnosis 2 years ago at 60 yrs old. This video is definitely a keeper to share with family and friends. ❤
Dr.Boster,
Respectfully, I don’t even think neurologist understand MS. Neurologists feel that, “Hey, if I put you on a high efficacy drug, I’ve done my job”. If no new lesions show up, you’re pretty much cured, and that is not the case. MS is progressive from the start. We must focus our attention on remyelination and not “Bio similar” drugs. The closest drug I’ve found to serve as remyelination agent and give me back some of my body is Dalfampridine. This came out in 2010. Why isn’t there any research to making this drug better. It’s 2023, we have the resources but you must follow the money. It serves as no benefit to making that better 🥺
Thank u Doc!❤
This is a short, but very powerful video and I will share it with my village! Thank you!
Thanks Dr. Booster, for all these wonderful videos 😊🙏. I appreciate all the information you offer us all..
My father never accepted that I wouldn’t get well. My brother completely understands. Other family and friends are kind. I think it’s because of two other MSers in extended family.
Yes! Thank you for sharing
Favor de transmitirlo en Español
Thank you massively, from Australia!!
I need to drive to Columbus and get you to be my neurologist! Because I cannot find a good one in Pittsburgh, to save my soul
It the old saying… you don’t get MS until you GET MS.
Never heard that before, I see what you mean though, kind of.
I was diagnosed with multiple sclerosis at the age of 43 in March and I went back to work and meet May we went through several supervisors and one supervisor got to me she said to me I think you use your disability as an excuse when I am trying to help you and I said to her no it’s not that it’s just you don’t know how to talk to people you’re very loud and you’re not very kind so I went to bow agreements on her they did nothing and I do work in social services so I understand what people are feeling and I went to the civil rights ADA department of human services and had to get that for accommodations for myself because as a social worker we are working in office and at home sometimes and she have to understand that some days is not alwaysRainbow and unicorns. Not only was it very dismissive and disrespectful and she doesn’t know me personally I just met her a couple of weeks before she came a supervisor and I just came back to work
I really enjoyed watching this video. So much that I watched it three times. It reinforced what I know about my crazy life and I had it on loud enough so my wife could hear. Thank you, Doug coffee in hand from Lyndhurst Ohio.
Please do more on this topic. This is the single most disappointing and discouraging thing about MS!!!! Not everyone is humble enough to be educated and this is another problem a neurologist told me... that in many years he saw this as an enormous impediment to all re!ationships involving a pwms. We pwms must hold steadfast to hope!
Thank you ❤ well said
Love this - thank you
#8 and #9 are very spot on. Sadly 😂
Thanks Doc!~John
Thanks for sharing. I always get a lot out of your videos.
Another excellent explanation Dr Boster
Many thanks!
This is sooooo accurate 💯💯
bless you doc
I’m diggin the pink and purple MS Lounge theme 👍🏼😁😎
Thanks Dr. B, great video! I'm going to send it to my friends and family that don't fully understand my MS. Honestly, I don't fully understand my MS symptoms sometimes either. However, my mother in law and 3 family friends (all women) have had MS for 30+ years so we're unfortunately quite familiar with it. I also like talking about my MS so people are aware of the condition and my symptoms if I happen to be stumbling around the yard or moving slower than usual. However, most of my symptoms are invisible so it's hard to explain sometimes.
Hi Aaron, it can be exhausting to try and educate family and friends about MS. How can I explain something I don't fully understand? Invisible symptoms aren't there, are they? Even my mom told me, she wasn't sure if all my symptoms are true and here, because she couldn't see anything. You look absolutely stunning is one sentence I used to like to hear a lot when I was healthy, but now it is just annoying and all the energy fot the explanations could be used otherwise. Most people do not understand chronic. lifelong treatment. regular doctors appointments. blood works. MRIs. and so on. After I had my first infusion of iv steroids my best friend asked me if I was cured now. Well, what can I say? Thanks for educating us to advocate for our health! Have a wonderful day. Greetings from Germany, Britta
Thank you Dr Boster this is awesome and I will certainly be sharing it! I find when I tell people with a health background they generally understand MS (although some knowledge is somewhat outdated!) but those without tend to expect me to spontaneously combust!! 🔥🔥💖🔥🔥
That is a wonderful synopsis of how multiple sclerosis affects us❤ thank you
Thank you, Dr. Boster. And thanks for you all guys for being here, sharing experiences...
For me personally the most frustrating is to deal with 'helpful ppl'. 'Have you tried this and this and this...?'
Good to know we are not alone. You are not alone❤
Great, informative video! Thank you Doc! One of my family members asked me, "How'd ya catch it?" I had to laugh!
Most of those are valid with my primary progressive MS. Some of the videos that you do I'd like to pass on to family members and I have in the past but they always ask why I don't go into remission or why I don't have relapses and then I have to explain it all that I have primary progressive. Would it be possible in your videos that you use some way of separating primary progressive from relapse and remitting that too gets very confusing to family and friends. Thank you in advance for your continued videos, they're very appreciated.
Absolutely excellent
This was INCREDIBLY helpful to send to family and friends! Thank you so much. Your videos have helped turn a scary diagnosis to a more manageable condition.
Very helpful channel. Thank you.
Thank you! I found your channel. I have had for years but was just diagnosed a few months ago at 62
Oh yes, are you better, or your be fine. Or its not as bad as my illness and at least it's not cancer.
Or have you fallen out with me, when fatigued sets in and I'm asleep. Some days I just don't have the energy, to engage with people. I'm fed up of explaining myself. Not one of my symptons have improved, they've got worse. I'm deflated without dealing with people😂. God bless each of us🙏🙏
Excellent informational and informative video. Just wish I could remember how to explain it the way that you just did. But I think I have learned a few pointers that I can remember. Thank you Dr. Boster!
Hello from Australia
I took your advice and have another neurologist who has now got me on fampridine to help me with walking my only concern with it is one of the side effects being facial pain as I already have TN, I just hope it does not get worse an my walking improves with minimal or no side effects.
I am always looking forward to your videos.
Hey Doctor,
Thank you so much....
Can you please provide some more insights on impact of MS on one's memory?
Thanks for this info Doc
Any time
Thank you so much for sharing and helping so many. I appreciate everything you share so much. I was diagnosed in 2008.
I've been watching your MS videos and they're all great but this one was award winning. I wish my neuro would explain like this. My family is super supportive but you offer great examples of how to make it relatable and explainable when people ask what it is. Thanks for what you do..I liked and subscribed
Thank you Dr. Aaron Boster. I think you are the most inspiring doctor I have seen in a long time. I am 56 and I live in LTC in NM. I just got in the wheelchair for the first time since 2013 and I am asking myself why I did it now. I am not on an any MS therapy and I have the desire just not the strength
I was diagnosed two days ago.
Great video Dr B. Question, if a neuro keeps saying that there is zero chance of having a relapse on Tysabri then why do we have MRIs every 6-12 months? Curious.
I can tell someone what is MS but he have to listen to me for more than 1 or 2 minutes. If someone want to here for more he will understand a little bit of what is MS. The problem is that people think that a person with MS can talk to you for MS in 1-2 minutes. No, you have to wait and listent to him more and more to understand a little bit!
Thank you. I sent this to my family and I hope they subscribe. I've been watching you for awhile (I switched my name lol) thank you Dr. B!!!
Awesome! Thank you!
Hello, I deal with spasms how do you feel about Tysabri?