MY MOMS MS | JULIE STAMM (Multiple Sclerosis )

[Music] hey guys welcome to this edition of free thinking with my time of course on my dawn how are you doing today i hope you've been doing great i literally i'm excited about having this uh guest that we have on today because it's almost like perfect timing that we were able to to chat with another you know person who is an ms survivor and a survivor in a big way because you know i know a lot of you have caught the recent news that christina applegate just came forward um saying and talking about her diagnosis with ms after having you know been diagnosed with breast cancer and having gone through all those issues that she had to deal with with that then all of a sudden life throws her another monkey wrench which is you know ms but she is really ready and preparing herself to fight the good fight and that's what we all need to consider when we get a diagnosis or you know we life throws as a curveball is rather succumbed rather than to come to that curveball and think oh woes me it's time to put that cap on that says you know what okay this is what life said dealt me but now it's time for me to deal life something and that is show life that i'm capable of dealing with anything that throws my way and you know that's what's so important about getting a devastating diagnosis like ms you know so often and unfortunately because of the bedside manner of so many doctors that are out there and because of some of the lack of information that some doctors have you know when they diagnose with something like this which is a you know a incurable autoimmune disease that has and affects people in different ways but it's becomes your life journey once you get this diagnosis sometimes doctors kind of try to crystal ball in the most negative way they can thinking that maybe they're doing you some good by telling you that things are going to be oh well as me rather than letting you know that there are things that you can do no matter what the diagnosis to no matter what the illness you know if any doctor out there you know was god none of us would be sick so none of them are god and you know none of them have crystal walls so none of them can actually literally prognosticate and tell you exactly what's going to happen over the next you know span of your life so it's more important i think that you steep yourself with as much information as you possibly can knowledge is king i remember when i was diagnosed back in 2000 and this is after having been misdiagnosed for 20 years showing me again that if doctors were so smart one of them would have caught the fact that i should have probably been diagnosed 20 years before i got diagnosed but they didn't catch that and when i realized that i got the diagnosis after going to see a doctor about the exact same issues that i had been having for 20 years and now this doc comes up with you have ms i realize that you know reading the the the you know physicians desk reference that he had in front of him i realized that the information in there was clearly not correct because back when i was diagnosed you know most doctors still believe that ms was just a disease of caucasian women of northern european descent which i'm not so clearly they were missing some information here and so that's what set me on my first journey was my diagnosis to study and find out everything i could about this illness knowing that information is king and the more i knew the more i understood that yes this is a devastating diagnosis however there's information out there from around the world that is showing me that there are things that i can do to impact in some ways the progression of my illness if i just pay attention and apply myself and apply some of the tools that so many other people who've been down this path have already learned and have shared so that they can help others and that's really what you know the objective is of my guest and after her diagnosis with ms she set about a mission of finding out as much as she could so that she could then educate others my guest today was diagnosed with multiple sclerosis back in 2007 at the age of 27. following her diagnosis she made it her mission to educate advocate and support others battling the disease she works tirelessly to help lessen the burden each patient has to bear her efforts have given her the opportunity to work with physicians with patients and foundations across the globe after the birth of her son in 2016 she shifted her focus to supporting the children of parents with chronic illness the children's book entitled some days a tale of love ice cream and my mom's chronic illness was created to normalize differing abilities and amplify how each of us can thrive in spite of the challenges the movement she has created has changed the apologetic tone and transformed the child and parents experience into uplifting stories that highlight the parents resilience julie stamp thank you so much for being a part of free thinking with montelle thank you for joining thank you so much for having me i'm so excited to be here absolutely you know it it's really i think an important thing for me to ask you to let's let's go back to when you got diagnosed and let's talk through that experience of the diagnosis but tell me i know that i think i said a couple things when in my open you were misdiagnosed for multiple years before you actually got your diagnosis were you not yeah it took her so it started in 2001 and i kept going to doctors and complaining about this just like you the same symptoms you know and my disease didn't change the perspective of the physician changed and glutes hurt share a little bit of that because you know unfortunately and i don't want to keep learning you know we know that women are probably two to three times more likely to get ms than a male and unfortunately you know if i remember back when i got diagnosed there was a lot of literature written about the fact that doctors often just said to a woman who came in with symptoms like the ones that you probably presented oh it's all in your head or it has something to do with your period or it has something to do with you know stress you're just the one you know all those things that these guys try to crystal ball let's talk a little bit let's take take somebody else who may be out there right now watching this going hmm i've had symptoms like that maybe i should get them checked let's take take me on your journey 2001 your first symptoms yeah so so it was i kept having urinary tract infections so i was having urgency and frequency and so they kept giving me antibiotics for urinary tract infections which it wasn't a urinary tract infection it was my brain not telling my body how to make my bladder work so that that was my first symptom with optic neuritis in my right eye and i would go to unfortunately like a lens crafters situation and they would say no you're fine here's another prescription for eyeglasses which wasn't really helping the double vision or the you know the blur yeah you know let me let me just say a lot of times and this is again ms is such a specific disease to the individual who has it um and why because folks for you don't understand ms is being considered in western medicine and autoimmune disease that's not the way it's considered around the world let's make sure we get that very clear there has been an argument between eastern and western medication for now 50 years when it comes to ms and though we all like to think that we all here in the west know everything we've proven that we don't however we do know that somewhere between 70 and 80 of the people who actually go in and talk to a doctor or physician and complain about some of their symptoms those symptoms almost always start with again seven eighty percent with some sort of optic neuritis or optic neuropathy and that optic aritis and neuropathy presents itself in different ways right as being an inflammation of the optic nerve it can present itself by giving you double vision it can present itself by giving you blurred vision it can give you like this hazy vision that you can't understand what it is normally in one eye but sometimes in both um in my case mine started yours started digitally in your right eye mine started in my left eye i literally went almost completely blind in my left eye i'll tell you a very interesting story my diagnosis should have come back in 1980 when i was in my early 20s and i was a midshipman at the naval academy getting ready to graduate we know now that i unfortunately along with about 90 of my other midshipman classmates when we went through to get our pre-commissioning immunizations we all unfortunately got an overdose of one of the particular vaccines now that vaccine did not cause my ms i probably would have had ms anyway five or ten years later however that vaccine sent my immune system into such a shock and such a burden that it just blasted me with one of my first bouts of ms and i literally almost went completely blind in my left eye i had a huge larger scotoma which is a whole division in my left eye i had blurred vision um i had something that's called an afro pupillary defect which means my pupil was just not just nystagmus but my pupil was reacting differently to light and dark and distance and nearby so i literally had just a tough time seeing on the left side of my body i went i had extreme temperature you know i had some left side weakness i had you know uh patches of of just really crazy touch pain i mean you just touched me it felt like you know somebody was stabbing me with something i relate to that yeah yeah so that was the early on but go ahead so you were started off you had blurred vision you had some urinary tract issues that really wasn't a bladder infection it was just your brain trying to make sure people understand that what happens in people who have ms we get these things that are called scars the reason why it's called ms is multiple sclerosis sclerosis in latin means scars so we get multiple scars in our brain or in our spinal cord if it's in your spinal cord it's called lateral sclerosis so when you have it in your brain these little scars form in in honestly and every person who has it's in a different place and sometimes it can be in the same place but in a different place and just like every computer is different and what do i mean by that i can drop you know a tablespoon of water right in the middle of my computer and my computer by me dropping the water in this computer versus another computer it will short out some of the connections in wiring in this computer differently than it will short out the one sitting right next to it if i put the water in the exact same place well if i have scars in my brain and you have scars in your brain they affect different areas of our bodies my brain developed over it's 65 years so that maybe a cell over here is what controls my left finger but that same cell over here is what controls your nose you know i mean and so we never know based on where a scar is whether or not it's going to affect people the same or differently we do know various areas of the brain the scars will affect balance they'll affect speech they'll affect muscle density and muscle you know response but we really can't identify exactly what muscle's gonna respond to a particular scar so i'm just trying to get people who are tuning in a little bit and let them know that you know i mean again every single one of us that's the reason why it's so important i think people who are diagnosed with ms use the term with my disease my disease because their disease is different than another person's disease so i'm sorry but what we can do is give you an idea of what you can go and ask a doctor about so again you started even not even with ms if you feel that something's off in your body it's up to you to advocate for yourself and you shouldn't you cannot accept this is a woman's issue or this is a change in diet or this is because you're traveling you know your body you know it's acceptable changes in terms of you know if it is travel and you know it took six long long years and giving up i mean i was praying i'm not like a depressed type person um i was praying to die i was praying to trip and fall and like get hit by a bus i was so at the end you know they sent me to i was working and then we had to you know they saw i was deteriorating at my company and so they sent me to a psychiatrist and luckily the psychiatrist said i'm depressed secondary to my underlying health issue and no one could figure that out and it was so validating to hear someone say that you know this isn't just in my head i'm fully aware of what's going on i just feel really unwell and i'm getting worse and no one's taking me seriously and it took going to a geriatric doctor which was my last my last stop i had been to every doctor and cried and cried and cried and it took a geriatric doctor so let's just do an mri and then that was it it was the smoking gun i'm like how did it take so long like when i look back if i type thank goodness for the internet now if you type those symptoms in you know it's going to tell you ms you know all of those things but um back then it wasn't really you know i didn't even have a computer at home back then it just wasn't common place um so you know when you say when you say you were deteriorating explain what that meant what that means i mean was your vision getting worse was your bladder getting worse were you feeling other symptoms i was getting new symptoms so um then my bowel was bad so just like you had a trigger event my trigger event was i went to um out to dinner and i had food poisoning so it takes with ms you have to have multiple factors in order for it to trigger you know like these random food poisoning won't activate ms and everybody but because i had everything else that happened perfectly aligned and that was like my major event that just set my body into overdrive and then it just kept eating away and each you know stress doesn't really help so i was getting worse and then it took my life i used to be able to wear high heels and then i noticed i couldn't i was lowering the heel every time i went shopping until i couldn't wear high heels which sounds so silly to think about but just because i was having balance issues and i noticed that i couldn't stand their business functions or if we were having a meeting i was worried constantly about where the bathroom was and you know you just i couldn't focus i couldn't it just kept getting worse and it took me tripping and falling for them to finally be like okay and you know i couldn't hold anything with my left hand it took me so long to me it was just such a disservice that was done because i wish i got treated earlier i wish i slowed this down earlier yeah and doctors kept telling you it's all in your head it's all in your head when we know that even the depression that a lot of people with ms suffer from is because of inflammation and because of the scarring in the brain it's not this is a physical manifestation or you know a symptom that comes from a physical manifestation it's not something that just you know the the other type of depression this is a depression that you have no control over right a lot of it and you know even our emotion i don't know if it's a symptom that you have but you know there are times when i'm supposed to be sad and i can't stop laughing or there are times where i'm supposed to be laughing and i can't stop crying it's just my brain doesn't really give the messages that it needs to give all the time that's something that's called emotional lability that a lot of people with ms suffer from because especially if they have scarring in that area of the brain that's called the pons area of the brain that literally controls our highs and lows you know um and you know it's it's it's a hard one for people to understand where you know you might see something happen that most people would go wow and then you kind of smile you're laughing a little bit about it people look at you like what the heck well it's not something that you chose to do it's it's a symptom of the illness yeah and that's hard for people to understand you know i mean it's hard to explain because you inside know that this isn't how your body should be reacting but you can't control the physical response that you're having you were married then first time yeah i was married then um he was wonderful and you know it's difficult because um he was great for when we needed to be in each other's life um but i think people fall in and out of love and i had fallen out of love and i feel bad that i did but it happens um and i think the worst thing that i could have done was stay longer because i was worried about going into the world and telling people that i had ms and um you know i look back and i think there were things that we couldn't you know we tried to have children and i always thought it was me that couldn't have children because of ms and um you know i came to terms with that and i always had an extreme amount of guilt about not being able to give him a family um you know it turns out that wasn't the case for me but um it really i think you have to choose a partner that doesn't see it as their burden even though they don't have ms they live with it and it depends how they take that so if they're going to take it in the same way that my outlook is i'm going to be positive about it i'm going to beat this and i'm going to help people or if they're going to feel bad that you're dragging them down or their their course of life is different because of your disease and that's not really a great relationship right right now when so when you finally got your diagnosis was that a who who day what was it explained i celebrated i did um they told me to go home it was right before um the new christmas so i came i was living in london at the time i came home celebrated with my family and then went back had my final lumbar puncture and then they gave me everything in the hospital and um but when they told me this is what they thought it was and they are 99 sure we just have to have the final lumbar puncture as the final diagnostic i was celebrating i was happy i was like i have an answer i know the man behind the curtain and i'm going to take him down now not knowing was bad for me like just deteriorating thinking like am i actually going crazy what's happening because i feel terrible but and i was getting worse and then you of course did you start a regimen of medication as soon as you got diagnosed i did so there were only three treatment options back then right so the abc's were around so i went through all of those and i was getting worse still with that so it turns out i have progressive ms so our treatment options are a little bit more limited so it took a really long time to finally find one that works for people with progressive ms and i when i found that that was the greatest thing because i wasn't progressing anymore but it took a long time to get to that point what did your lifestyle was did you change your diet did you exercise differently did you do things or did you do you go on that kind of a journey i tried um i kept a food diary for a long time just to see if it made any impact too and it didn't change it does for a lot of people for me yes if i eat a bag of potato chips i'm not going to feel as great as if i eat a bag of carrots so those are just common sense changes um but i didn't do a entire lifestyle shift i did incorporate you know acupuncture and dancing and stuff that i really enjoyed um but to deprive myself of cheese was a hard one right right well now do you i mean now uh how are you doing now i'm very very very fortunate to be in a uh stem cell uh trial right now so i feel like i i'm taking charge of this disease i feel like i i always have tried to take charge um so getting on a treatment that stops it for me was essential um so i feel like i have that and then i was very fortunate to get selected to be one of 50 in this stem cell trial and has that been working out for you i have one more treatment to go um and i mean is that a new season it's a spinal infusion yeah so they took it's it's the only fda approved one um right now so it's not it's not one that you know you can go on the internet and go wherever and find someone that if you give them a hundred thousand dollars this is a fully ethical no money crossover it's fda oversaw um i you know there are changes for sure you know i i noticed so things that people won't see is every step i'm like okay left leg up watch that left leg up okay where's the bathroom left leg up don't walk in the wall do this you know in my mind but i'm walking along no one sees that in my mind you know what's going on but i noticed the other day that i was looking at the trees and i wasn't thinking about my steps and i was like could this be the truck could this be the stem cells kicking in you know i just i hadn't noticed certain things so walking without paying attention every step right but um i i worked on i helped to bring a technology into the marketplace which you should do a little reading about yourself it's called a company called helios medical technology that has a device that's called a ponz device pons portable neural modulation system that just now about six months ago just received fda clearance uh for ms for people who have gate problems for mild to moderate ms you would probably qualify to and it will be prescribed in the next six months or so i'm writing that down called helios medical technology the device is called a ponz device it is uh got clearance here in the u.s the united states in the last six months for gate issues for mild to moderate ms it was cleared in canada about four years ago for traumatic brain injury and ms balancing gait mild to moderate and it's also being investigated in australia and in the eu it's now getting gotten an investigatorial device qualification in the eu and in australia because they're using it in australia for not only ms but for stroke and for traumatic brain injury in the eu for traumatic brain injury stroke and ms so you might you know keep keep an eye out they are starting to you know we're moving it forward to be commercialized here in the united states it requires some physical therapy along with the use of the device but it's non-invasive in the sense that it's just a electronic stimulator that you put on your tongue and then you do exercises along with that for about a 20 minute period of time and it has in 75 of almost all patients who have touched it and used it it improves their balancing gait that's amazing i'm definitely going to look that up thank you felia's medical technologies yeah i have it i agree yeah so now you did get pregnant though two years ago i did you know you got married a second time uh i didn't we didn't get married uh no i uh it's no it's really funny um i feel like with ms there's so much we can't choose and um with my partner i choose him every day and i like that i like having the choice i don't like anything being told that i have to do something a certain way um you know we're together eight and a half years and every morning i'm grateful that he's there and if one day he wakes up or i wake up and we don't want to be there i like that we have that choice and i hope we never get there but he's you know we both it's it's working it's a it's a fun way it's worked for what eight years how long eight and a half yeah he's wonderful yeah he's really good and he's a wonderful father and you know jack my son i didn't think i could get pregnant i had tried for four years with my ex-husband um so i just you know never and i was told not to get pregnant because of ms so i just assumed it wasn't in my cards well that's that's very interesting when you say again that's because there's so many much differing or so many differing opinions out there there was a period of time when you know one of the things that doctors would suggest to all women who were diagnosed in their early 20s with ms was to get pregnant because we also noticed that pregnancy abated a lot of the symptoms a lot of times some women would get pregnant and all the symptoms would go away and they wouldn't come back until maybe a year or two after the baby was born as a matter of fact there's a whole research project that's been out of israel for now i'm talking close to 15 years where they have been studying something called the alpha feta protein which is the protein that both the mother and the baby produce during gestation that keeps each from looking at the other as a parasite because technically when you have get pregnant anyone who gets pregnant that baby is a parasite inside of your body well you create a hormone you create the hormone and the baby creates a hormone to stop your immune system from attacking each other and for some reason there seems to be an implication with that hormone when it comes to autoimmune diseases it allows the body to stop attacking itself so you got pregnant did you have any abatement of your symptoms while you were pregnant i didn't um i first i think if anyone is told not to have a child and they want to they should get a different doctor i think that's a that's your choice as a woman whatever you want to do with your body and even if it is to your detriment which i don't think it would be it's your choice i don't think any one person can dictate what you do with your body so get another opinion if you are told not to um and it it it's my greatest gift you know of everything that i've done and accomplished in life he's my favorite thing i'm the most proud of him i'm proud of the boy that he is and you know after he was born it was really hard the first few months and i overdid it on steroids because it was hard to keep up and now i have cataracts at the age of 42. you know i mean um but yeah i wouldn't change it i would do it all over again and you know he also changed your mindset because before his birth you were trying to advocate for other patients just for the patient themselves and then you you talk a little bit about this mindset change that you decided that you wanted to was it because you recognized you had to explain more to your son about why mommy can't on this day or that day and then you decided to share it with others i mean what would change your mindset so um a lot of people with ms have cognitive issues and i happen to be one of them so from the day he was born i write him letters not every day but whenever there's something significant first food first you know anything um first tooth any exciting event but i started reading the notes on the days that i would cry myself to sleep feeling like i shouldn't be a mom because i have a mess and these are the worst days that i've ever had and so i started talking to my son when he got a little bit bigger about three and he was like oh you mean train day so i was like do you remember that day that we had a scooch home because my legs wouldn't work um and we pretended like we were trained do you remember like do you remember um when you sat on mom's lap and do you remember when i couldn't go we had we go on air conditioner missions like it's too hot out so we have to run in and out of shots um but he saw them different so to me i was missing things because we had to keep going in and out of stores but to him it was like this special mission right so and i think something that we all parents do is we take we project our guilt onto them and if we just stop and listen it changes they see us as perfect even though we're not and we definitely aren't um they see our lives as adventures with them we're there we're loving them and that's what that's what started the book because i started talking to all the societies and the organizations that i appreciate and i appreciate the resources that they give to people but they don't have great resources for children and you know i said this about adam too he doesn't have the disease but he lives with it and so does my son he doesn't have it but he lives with ms for sure and it impacts his life there are things that we have missed and you know he missed one page in the book he has a bathtub full of balls because we missed going to a ball pit birthday party i had so much guilt but he had so much fun and he didn't get pink guy well i have a book called some days a tale of love ice cream and my mom's chronic illness uh is that available on amazon it is it'll it is coming out september 28th but it's available for pre-order now gotcha are you um are you blogging or can people can reach out to you to get to find you um yeah i'm on instagram so they can find me at i am stam s-t-a-m-m and uh yeah i'm there i accept messages and i mean i know i i fortunately got an opportunity to uh be one of your contributors for at least a uh you know a comment um but you got a lot of people that read and reviewed your book and and were very very very pleased by it well i am beyond appreciative of yours and your book your book was my first book that i read when i was diagnosed um so i you were first on my list we are very fortunate that we have received a lot of you know selma blair likes it and her son likes it who is you know who it's for is for her son right i reached out to i reached out to soma uh right after her diagnosis and um you know spend a little time with her in her home just kind of talking through some of the things you know i know i don't know if you know i i did climbing higher but then i also did a living well with montalo you have two living well books have you seen those two no i haven't no you're living well uh emotionally and living well with montal those are two different books i put out both of them kind of talk a little bit more about my journey with ms but also you know outline some ways that you can actually impact and this is after you know again everyone is different and i understand that but you know um i've been talking to a lot of doctors recently and a lot of people who have saw in our st boat and we're starting to find that you know if you can seek out an anti-inflammatory lifestyle including a diet that seems to have been impacting a lot of people so i wrote some of the information about that in uh my living will emotionally book and i'm also living well book but there's you know we can help you and i can i'll make sure that you know my staff maybe shoot you a bibliography page of some other books that you might want to just take a glance on because there are some slight lifestyle things that you could do that at least for others have proven to be successful in impacting the disease yeah no i appreciate that i think you are the biggest advocate that we have out there so you're wealth of knowledge to us so we appreciate it trying trying trying but the whole community knows uh you know it's we've seen a lot of celebrities get diagnosed and um you've had it the long you know you've you've been through it you you are still standing you know when i was diagnosed 10 14 years ago they said i wouldn't be walking i'm walking and the same for you that's that that's the one thing that i i wanted to make sure i hit on you know and if they all had crystal balls none of us would be sick and they don't have balls so i remember when i got diagnosed and the doctor said to me well you know unfortunately you're an african-american male and african-american males do the worst with you know ms diagnosis and you probably will be looking at you know some sort of assistance for walking in the next couple years and then you know you could end up in a wheelchair but you know that let's just try to i was like i want to look at him smack him upside his head it's like how dare you tell me what you think is gonna happen to me right and that's the best thing about seeing you is that you give us something to look forward to and that's what we all need absolutely well and you give us something to look forward to especially you know there are so many other mothers that are out there that that just think that they can't you know manage and you know i mean talk a little bit more about you know how you navigate managing just life with your son so i think everyone has something you know it could be you know diabetes it could be epilepsy there's we all have something we have to so i think realizing that everyone is in the same boat maybe it's a different shape boat maybe it's a different color but we all have something to deal with and navigating waters that we have to do with our child but we get through it all we really need for them is to listen and love them and you know the thing that i'm proud about my son is that he's aware of the room and i think as a mom with ms we create kind children they're resilient they notice the room he can notice when the heat's impacting me and he'll be like let's go to the shady side he'll he'll become a better person when he grows up because he's aware of how other people around him are feeling right he's empathetic and he also understands how to care right yeah and that's something you know you can't necessarily teach in school that's something that you have to ingrain in them from early on and i think that's what i'm most proud of and i and everyone that has this disease even though there are things that are different you're giving your child an amazing life it doesn't matter how it looks absolutely absolutely very very interesting the way you said it all for my children understood they lived through me you know go to disney world and being able to go outside for maybe 15 minutes of this clip and get inside a restaurant for a little while cool back down get back outside cool back down you know i heat exacerbated my symptoms like no tomorrow for quite a long time though things like this have changed in me um now fortunately my wife now is just like her son is one of my biggest advocates i mean she literally will say to me before you know i love to cook uh sometimes i'm a little bit more heat sensitive than normal and when i say normal i mean like my heat sensitivity is like a roller coaster some days i'm fine 85 degrees outside i'm okay 86 no i'm not okay you know um in the kitchen when i'm cooking sometimes i'm okay with the oven sometimes no i'm not you know after i get done cooking the meal i will sit down and literally strip down at the dinner table and she'll notice it and you go you can crank the air conditioner up a little bit more and go get a fan because it just you know just like short circuits on a computer or short circuits in a light i start the short circuit a little bit you know i unfortunately over the course of the last couple years i have uh have had some significant issues with heat where literally i was i remember i'll never forget this this is um i also something that seems to happen in folks with ms but not necessarily with more prevalence i happen to suffer from a major hemorrhagic stroke we are seeing strokes in people with ms they don't know if there's a connection or not but there could be um when my stroke happened and i recovered from that after 30 days or 30 years in the hospital and three months of rehab i found myself almost five times more heat sensitive than i was before the stroke and didn't know this and you know and the problem with us you and i is that by the time we realized that the heat's bothering us the heat was bothering us 25 minutes ago yeah 25 minutes ago you know you should um but i uh literally i have hit the ground a couple of times um i've been in restaurants i was i'll never forget i was at a restaurant where they had a a large one of these you know fireplaces in glass uh you know just a decorative thing that no one in the room was probably feeling any heat out of that thing but i was and didn't realize it because i was sitting but sitting with my back to this thing and then you know um all of a sudden in the middle of the conversation i was out boom plopped down in the chair and my friends got me up and laid me down the floor and they moved me away from the heat as soon as i got you know just a little bit of a cold press on my neck boom i felt 20 times better that snapped me up because it happened before and i realized you know i was sitting someplace that was you know maybe 15 feet away from a fire pit and the breeze outside was blowing that heat from that fire pret on my table and you know people at the table complained about it being a little hot but by the time i said you know yeah you know that's cast out when i realized how hot i was i was out so i have to pay very close attention to temperature gradients if i walk into a room and and just like your son your your wife meershawn does it for you my wife does it for me we walk in the room and she'll go baby it's hot in here if i'm hot you got to be hot and i will say well i'm okay no you're not okay let's get out of here and you know she'll get me out of here before i i argue with her right you know it's good yeah you know i'm really proud that he doesn't make me feel bad about it you know he's always like oh i want to go in there anyway i wanted to you know like let's stop and do this and you know he knows i'm always looking for the bathroom so he spots the potty for me wherever we go and he's like just let me know and it's just it's whoever he marries down the road is going to be very lucky to have someone that looks out for them as much as he looks out for everyone absolutely you know and that's what we need i mean i think you know one of the most important things and aspects of an illness like the one we have is that those around us who love us help us understand that they are as concerned for us as we are concerned for them you know i mean it's it's really important so now i mean you want your book one more time give out just hide a little book so everybody knows it yes it is some days a tale of love ice cream and my mom's chronic illness and it comes out september 28th it's available for pre-order now on amazon and it will be at bookstores near you absolutely and what do you what do you hope to see happen in the ms community in the next in the next few years well i want children to be included and care partners i want them to have an outlet we have a lot for patients and i think we're we're missing the mark a little bit on appreciating the role that our network creates for us you know we all know that it's important to have friends that are on similar journeys so we network and we meet other msers so we feel validated and we have people that can understand what we're going through but we do need to support the people that support us um a little bit better so i'm hoping to start something to help do that great and yeah i mean there i think you know i i cannot remember the name of it i know that there's a chat forum that is up online for family members and kids of people with ms but maybe that might be something that your book will help spark i hope i i really do because i think the more and more we share the more and more we get an opportunity to just express ourselves and to tell people and let them know that you know it's it no matter what your level of illness there is still reason for hope and that's the thing about the book is that when the when any adult reads it they get a little sad because they know the the fight behind it but when kids read it they see it as great adventures and an exciting book so i always tell people um a lot of parents have used it as a tool to tell their children for the first time and that's my favorite thing um because i think being transparent is better than lying to your children and you know it's it's a hard conversation but there's going to be a lot of hard conversations and this is one that they can deal with as long as you give it to them in the proper way they don't need to know about demyelination they don't need to know about relapses they need to know that you love them no matter what and your days might look a little bit different but they're going to be okay um so i think i always tell people read it before you read it to your child because it does strike up some emotions because you realize how hard as a parent these days are for the parent but then read it to your child and realize that your child sees you like that and that's how you have to be forgiving of yourself right anything else you want to add no that was i am so appreciative of your time and so happy i got to talk to you and you really are wonderful for us oh no thank you well if anybody wanted you were wonderful for us also so if people want to reach out and get a hold of you give them the website one more time on instagram it is i am stam so i a-m-s-g-a-m-m okay on instagram and they can reach out to your spine and give them some tips yeah absolutely and i'll i um i have a number of readings virtual readings scheduled so they are more than welcome for two free events thank you so much well i can't say thank you enough for being a part of today's free thinking with montel and i know you guys really enjoy this so make sure you share this information with your friends and get them to click on and you know listen listen closely especially if you know someone who has ms this is a great conversation and the type of conversation that i hope and wish that more of us who are survivors were having so other people could understand that it's worth surviving thank you so much montal i really appreciate it thank you so much you stay safe and oh you know i hope you got your vaccine did you i did of course oh president i literally uh a month ago i got vaccinated back in january and um you know i was a little reticent about the vaccination having had ms knowing that you know because i'm on a medication that is an immune modifier and thought that i may not be getting the same protection but i'm gonna get it anyway i got it i will tell you i'm so thankful for it because we're now recognizing that people who have ms who have been getting coveted without the vaccine had been getting pretty debilitated and having to go to the hospital and and this is a tough one to survive so um i was very fortunate i did i i contracted a covet now about four weeks ago but i am absolutely 100 positive that it was because of the vaccine that i did not have as tough a time as i could have had had i not gotten it thank god because the world needs you so don't go anywhere no i'm not going anywhere but i thank you so much for being a part of free thinking with montauk today and thank you for tuning in thanks for joining me on our free thank you with my tall please make sure you're subscribed and hit the bell to be notified when new episodes post each week we'd love to hear your feedback so please send us your comments [Music]

Channel: FREE THINKING with Montel

Views: 240

Rating: 5 out of 5

Keywords: news, health, montel williams, usa, america, Politics, us, BLM, wellness, together, information, vetrans

Id: sXQjfEceM2o

Length: 45min 42sec (2742 seconds)

Published: Wed Sep 22 2021