#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | NCI Cancer Stats @NCICancerStats Check out our Did You Know? video to learn about common types of brain and other nervous system cancers: https://t.co/3YkHMI26en #BTSM https://t.co/CDWtnxqsLo |
 | Lisa O'Leary @lisaoleary524 Hi everyone, Lisa here, former care partner to my husband Patrick who passed from #GBM 7/2015. Our wedding anniversary was 5/24 - tough day. Glad to be here co-moderating with @adamhayden tonight. Sorry we don't have the official (@)BTSMchat page up and running yet! #BTSM |
 | Liz Salmi @TheLizArmy Really looking forward to tonight's #BTSM chat starting NOW! The topic: physical movement, with moderators @lisaoleary524 and @adamhayden. Here's me relearning how to walk after my 2nd brain surgery. How has your movement been affected by a brain tumor? https://t.co/tWrWnavznh |
 | Yale Cancer Center @YaleCancer RT @NicholasBlondin: Yale Neuro-oncologists hard at work to bring the next breakthrough treatments to our patients! @YaleCancer #ASCO19 #btsm https://t.co/175fdxWSgW |
| Lisa O'Leary @lisaoleary524 RT @TheLizArmy: Really looking forward to tonight's #BTSM chat starting NOW! The topic: physical movement, with moderators @lisaoleary524 and @adamhayden. Here's me relearning how to walk after my 2nd brain surgery. How has your movement been affected by a brain tumor? https://t.co/tWrWnavznh |
 | Claire Snyman @clairehsnyman @adamhayden Dialing in from Vancouver - Happy Sunday everyone :) #BTSM |
 | Christine Choan, PhD 🧬🧠 @preopticarea RT @TheLizArmy: Really looking forward to tonight's #BTSM chat starting NOW! The topic: physical movement, with moderators @lisaoleary524 and @adamhayden. Here's me relearning how to walk after my 2nd brain surgery. How has your movement been affected by a brain tumor? https://t.co/tWrWnavznh |
| Liz Salmi @TheLizArmy @clairehsnyman @adamhayden Liz here in Sacramento, CA. Living with Grade 2 astrocytoma. Tonight's topic is timely! I just bought new running shoes today. #btsm |
 | Adam Marc (he/him) @adamhayden Clinical, academic, research, or industry professionals: Feel free to share credentials and affiliations. Thanks for joining! A special welcome to anyone joining from #ASCO19 #BTSM |
 | Erica Robinson @eleighrobs @adamhayden @lisaoleary524 Erica here. @NBTStweets @NewEnglandNBTS Brain tumor advocate, volunteer, team captain. #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @adamhayden Thank you for sharing this, Liz! #BTSM |
| Erica Robinson @eleighrobs @adamhayden @TheLizArmy @lisaoleary524 Thank you for sharing this. #BTSM |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ I made it! 😊 Hi wveryone, Sabine here from NJ. AA3, 5+ years, bt advocate& advisor. #btsm |
| Erica Robinson @eleighrobs @TheLizArmy @adamhayden @lisaoleary524 @paulfranktweets Brave! And to think I was going to share my MRI outfit that I wore today. #BTSM |
 | Emily McIntosh @mcintose @adamhayden Emily, from Canada #WeTheNorth Two year survivor of anaplastic astrocytoma gr. 3. Finishing third degree (PhD) in kinesiology - so I would say i'm an exercise enthusiast! #BTSM |
| Lisa O'Leary @lisaoleary524 @mcintose @adamhayden Looking forward to hearing your perspective on the topics tonight! #BTSM |
| Liz Salmi @TheLizArmy @eleighrobs @adamhayden @lisaoleary524 @paulfranktweets Hey, @adamhayden isn't the only one who can rock a cane! #btsm #likeaboss |
 | Low Grade Glioma Registry @gliomaregistry #btsm on right now! |
| Erica Robinson @eleighrobs @adamhayden Brave. #BTSM |
 | KateWhy @KattyBatty1 @TheLizArmy @lisaoleary524 @adamhayden That reminds me an awful lot of videos I have of my son after his first surgery. #btsm |
| Liz Salmi @TheLizArmy @eleighrobs @adamhayden @lisaoleary524 @paulfranktweets But seriously, I do want to see your MRI outfit. You could do a whole YouTube video blog on how to be a fashionable patient. #btsm |
 | Rachel Yan @rachyan_ Hi I’m Rachel, a medical student here to listen and learn. #BTSM |
| Lisa O'Leary @lisaoleary524 @Curtis1158 @adamhayden Welcome, Stephen! We're glad to have you join us! #BTSM |
| Liz Salmi @TheLizArmy @mcintose @adamhayden This is a perfect topic for you! #BTSM |
 | Jennifer Swenson @JKBSwenson As experts gather for #ASCO19 to do good work please be mindful of the hundreds of children diagnosed with DIPG and DMG H3K27M each year. Over 50 years w the same close to 0% 5 yr survival rate. #btsm |
| Low Grade Glioma Registry @gliomaregistry @gliomaregistry @YaleCancer |
| Liz Salmi @TheLizArmy @adamhayden WOW! I barely recognize that Adam. Much to ponder... the people we were before, the people we are after... #btsm |
| Lisa O'Leary @lisaoleary524 T1a My husband's #GBM was rt parietal lobe. He immediately had issues with proprioception. His balance problems prevented real exercise. Definitely contributed to his depression during tx, as he was incredibly active before dx. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @eleighrobs @TheLizArmy @adamhayden @lisaoleary524 @paulfranktweets Do you take a picture every time you get an mri? I do 😜#btsm https://t.co/pRS6pWHFuq |
| Erica Robinson @eleighrobs @TheLizArmy @adamhayden @lisaoleary524 @paulfranktweets Not fashionable. As the nurse said: "Here, honey. One size fits no one". #BTSM https://t.co/2IijnQrgYV |
| Lisa O'Leary @lisaoleary524 T1 When I was caring for my husband, the demands were 24/7 and I completely neglected my own care. I did not exercise. After he died, I was dx with rheumatoid arthritis, and had back and elbow surgery within 1.5 years. #BTSM |
| Liz Salmi @TheLizArmy @rachyan_ Welcome Rachel! How is school going? Are you interested in any particular specialties? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @adamhayden T1: I was very lucky, Tumor/Surgery did not affect motor skills. Fatigue, however, is a whole different story.... #btsm |
| Liz Salmi @TheLizArmy @MakesItFancy Welcome, Alison! Happy surgerversary! #btsm |
| Low Grade Glioma Registry @gliomaregistry so brave of you to share-hard to believe seeing you now! #btsm @TheLizArmy @gliomaregistry @theABTA @NBTStweets @theIBTA @STOPhersentumor |
| Erica Robinson @eleighrobs @Sabine_NJ @TheLizArmy @adamhayden @lisaoleary524 @paulfranktweets I actually haven't until today! #BTSM |
| Claire Snyman @clairehsnyman @adamhayden T1: Balance issues after surgery - challenges walking around at night in the dark 🙄 #BTSM |
| Liz Salmi @TheLizArmy @adamhayden T1: My tumor is in the left parietal lobe, in the sensory strip and next to the motor strip. It has impacted my balance & #proprioception, and after surgery I had to relearn how to hold my body in place in order to walk. I did extensive physical & occupational therapy. #btsm |
| Erica Robinson @eleighrobs @Sabine_NJ @adamhayden T1/ Same. My motor skills were not affected. #BTSM |
| Rachel Yan @rachyan_ @TheLizArmy Very well, thank you! I am interested in neurosurgery and neurosurgical oncology, so this talk and all of the perspectives shared are invaluable. #btsm |
| Liz Salmi @TheLizArmy @eleighrobs @adamhayden @lisaoleary524 @paulfranktweets OK, what is the hashtag for #MRIselfie???! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @TheLizArmy: @eleighrobs @adamhayden @lisaoleary524 @paulfranktweets OK, what is the hashtag for #MRIselfie???! #btsm |
| Emily McIntosh @mcintose @adamhayden A1. I struggled a lot post-op. I wasn't allowed to exercise (more than walking) for an undecided time after surgery. This was very challenging since exercise is how I relieve stress. Combined with the depression from the seizure meds I was put on made for a trying time. #BTSM |
| Christine Choan, PhD 🧬🧠 @preopticarea @TheLizArmy @lisaoleary524 @adamhayden My tumor is in the right insula, technically not a region involved in movement. Before being diagnosed with astrocytoma, I had a diagnosis of MS because of movement problems, not sure the diagnosis was correct! One of the “MS lesions” started growing and was the astro! #btsm |
| Low Grade Glioma Registry @gliomaregistry Inability to drive due to mobility issues very difficult -important (in locations where available) to learn about car services-in Massachusetts it is "The Ride"-ask your providers if they know of such a service @DanaFarber @BWHNeurosurgery #btsm #gliomaregistry |
| Liz Salmi @TheLizArmy @clairehsnyman @adamhayden I can relate to "challenges walking around at night in the dark." You know that neuro test where you put your palms out face up and then close your eyes? I fail that one EVERY. SINGLE. TIME. #btsm |
| Emily McIntosh @mcintose @adamhayden A1 pt 2. I'm now allowed to exercise freely, but unfortunately still experience terrible headaches and vomiting if I push myself too hard, so I just keep an eye on my heart rate and slow down if my HR gets too high. #CantStopWontStop #BTSM |
| Lisa O'Leary @lisaoleary524 @mcintose @adamhayden Good for you for finding the balance that works for you! No pun intended. :) #BTSM |
| Liz Salmi @TheLizArmy @preopticarea @lisaoleary524 @adamhayden I was also thought to have MS (before the "lesion" grew within a few weeks). I wonder, who else was initially thought to have MS before their brain tumor diagnosis? I imagine this to be more common among more low grade tumors. #btsm |
| Lisa O'Leary @lisaoleary524 T2 Patrick had ltd occ and physical therapy bc most of his clinical tx was inpatient in the hospital. He refused physical assistive devices until he was unable to walk, and was forced into a wheelchair. Photo from our wedding. #BTSM https://t.co/Monu5bfuQW |
| Liz Salmi @TheLizArmy RT @gliomaregistry: Inability to drive due to mobility issues very difficult -important (in locations where available) to learn about car services-in Massachusetts it is "The Ride"-ask your providers if they know of such a service @DanaFarber @BWHNeurosurgery #btsm #gliomaregistry |
| Adam Marc (he/him) @adamhayden Love this patient/self-monitored bio marker awareness! Track HR & correlate to other physiological effects. #ptexp #btsm |
| Claire Snyman @clairehsnyman @TheLizArmy @adamhayden Yes!! I had many bruises to show for my endeavors to walk around at night time! #BTSM |
| Erica Robinson @eleighrobs @lisaoleary524 ❤️ #BTSM |
| Christine Choan, PhD 🧬🧠 @preopticarea @TheLizArmy @lisaoleary524 @adamhayden I have heard several people telling me the same thing. I was treated for MS for several years while the tumor was growing slowly. Radiologist always checked the tumor from the previous MRI, indicating no change since the tumor was growing so slowly. #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 Unrelated to the chat, but you are a STUNNING bride. I am happy you were able to marry your best friend and the love of your life. #btsm |
| Liz Salmi @TheLizArmy @clairehsnyman @adamhayden Was your tumor also in the parietal lobe? #btsm |
 | RipsRant @RipsRant @adamhayden Balance coordination. Fine motor. #BTSM |
| Lisa O'Leary @lisaoleary524 @TheLizArmy Thank you Liz 😭 we did pretty well on our wedding looks for planning in one week! I did find that dress online, no alterations, 2 months before and bought in case we had the chance to use it. I am the luckiest woman to have married him. #BTSM |
| Liz Salmi @TheLizArmy @adamhayden T2: I worked w/physical & occupational therapy. At a certain point I was visibly "fine" so no more therapy was prescribed by my doctor. However, proprioception challenges are just a thing I FEEL, so I work hard on this (every week, even today!) with a trainer at my gym. #btsm |
| Low Grade Glioma Registry @gliomaregistry #btsm question-why do we keep patients in hospital gowns? would more "normal" attire (even favorite sweatpants) elevate mood when doing PT etc? |
| Claire Snyman @clairehsnyman @TheLizArmy @adamhayden No - third ventricle - so underneath the parietal lobe (I believe?) #BTSM |
| Lisa O'Leary @lisaoleary524 @preopticarea @TheLizArmy @adamhayden Wow! Amazing proof of how important it is to be our own advocates as patients and care partners! #BTSM 😦 |
 | I Live Now Rachel 💎 @KickBrainTumors Hello beautiful people! I will be listening in. My first brain surgery in 2003 I could barely walk. Occupational & Physical therapy was a journey. My second brain surgery in 2010, walking, hearing loss, memory, and speech therapy. Left Brain 🧠 #BTSM I am also @HYHUTriangle 👩🏽💻 |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @adamhayden Physical therapy, Smart watches/ fitbits etc. I think it can be motivating to be a member of an (online) community to exercise together. #btsm |
| Liz Salmi @TheLizArmy @adamhayden T2 (cont): I recognize my ability to work w/a trainer who specializes in movement is a luxury. At the same time, my training and I have learned SO MUCH together. I wish there was a place we could publish what we've learned so others could benefit from my training. #btsm |
| I Live Now Rachel 💎 @KickBrainTumors RT @TheLizArmy: Really looking forward to tonight's #BTSM chat starting NOW! The topic: physical movement, with moderators @lisaoleary524 and @adamhayden. Here's me relearning how to walk after my 2nd brain surgery. How has your movement been affected by a brain tumor? https://t.co/tWrWnavznh |
| Erica Robinson @eleighrobs @gliomaregistry Yes. I think wearing something comfortable, familiar, may make patients feel more at ease. Physically and mentally. #BTSM |
| Lisa O'Leary @lisaoleary524 @Curtis1158 California - surgery was at Kaiser in Redwood City, but radiation and chemo and most other tx at UCSF #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors RT @Sabine_NJ: @eleighrobs @TheLizArmy @adamhayden @lisaoleary524 @paulfranktweets Do you take a picture every time you get an mri? I do 😜#btsm https://t.co/pRS6pWHFuq |
| KateWhy @KattyBatty1 @adamhayden T2: my son had inpatient PT/OT, a leg brace, and then outpatient PT for several months and has a yearly PT/OT followup. He found continuing bball and track at school the best PT for him though. #btsm. |
| Low Grade Glioma Registry @gliomaregistry #btsm the majority of the population could not do that! |
| Lisa O'Leary @lisaoleary524 Side note: I am LOVING all the photos and videos being shared today!! #BTSM |
| Emily McIntosh @mcintose @adamhayden A2. #BTSM I was very fortunate to not require physical rehabilitation. I used my social support network (friends/ family) to encourage me to get outside and moving. Very grateful that my fantastic running club @LagerJoggers slowed right down to run with me when I was recovering. |
| Liz Salmi @TheLizArmy @gliomaregistry I am OK with the gowns that are designed as "wrap arounds" (no ties). I would appreciate cooler patterns! Cats, emoji faces. I mean, get with the times! #btsm |
| Erica Robinson @eleighrobs @adamhayden @gliomaregistry This is a great outfit! Fashionable, yet practical. #BTSM Not easy to move in scrubs, robe, that is falling off, becoming untied. |
| Liz Salmi @TheLizArmy @Sabine_NJ @adamhayden Oooh, what if there was a brain tumor exercise community?? What would that look like? #btsm |
| Adam Marc (he/him) @adamhayden Gotta bottle the #hpm chat rule to do intros with a GIF! #BTSM |
| Claire Snyman @clairehsnyman @adamhayden A2: Working with a vestibular physio to help me with my balance really helped me. I also try to keep physically fit to ensure my body is up for physical movement i.e. if my muscles can help manage my balance, this is a good thing! #BTSM |
| Low Grade Glioma Registry @gliomaregistry #btsm yes very important to ask your doctor if the "bookends" have been read and compared (i.e. did the last MRI get compared with the very first (not just the one before))-make sure to ask! #glioma #gliomaregistry @BWHNeurosurgery |
| Emily McIntosh @mcintose @TheLizArmy @adamhayden @TheLizArmy Are your proprioception difficulties location specific or full body? Are the challenges foot position, joint position or more? Do you use mirrors when working out? #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy @adamhayden Steps/miles/minutes per day? Definitely message board to motivate each other! #btsm |
| Erica Robinson @eleighrobs @lisaoleary524 I only thought of taking it because we were chatting tonight! #BTSM |
| Liz Salmi @TheLizArmy @eleighrobs @adamhayden @gliomaregistry FASHION CRITIQUE of @adamhayden's outfit at physical therapy: Hoodie makes sense, but I couldn't do leg lifts in skinny jeans. #btsm |
| Lisa O'Leary @lisaoleary524 T3 Before dx and tx, Patrick was one of the most active people I ever met. Post-dx, he was terribly embarrassed by the physical and mental toll it took on him, and no longer wanted to see friends. So painful to see him isolate but had to respect his wishes. #BTSM |
| Liz Salmi @TheLizArmy @mcintose @adamhayden Location specific (tumor is in left brain, issues manifest on the right ), but as such I overuse the left side to compensate & have developed many tension patterns over the years. I have hemispatial neglect, run into things, have to LOOK at parts of my body to move them. #btsm |
| I Live Now Rachel 💎 @KickBrainTumors Brain tumors can run in the family #BTSM worth a share! |
| Lisa O'Leary @lisaoleary524 I would LOVE to see this! I'm not a patient, but if I can help to encourage the community in any way, I'm IN! Not that not being a pt has ever stopped me from being involved before... :) #BTSM |
| Liz Salmi @TheLizArmy @adamhayden T3: I don't feel stigmatized, but I really suck at going down the stairs. ANY STAIRS. I am probably worse a 2-5 steps because I think "it's just a few steps" but that is when I trip up and fall down the stairs. #btsm https://t.co/JXs2XpnC7u |
| Liz Salmi @TheLizArmy @Emi_Livingstone Thanks for hanging out with us. Jump in at any time. #btsm |
| Erica Robinson @eleighrobs @lisaoleary524 Me too. #BTSM |
 | St_Molly_AgentofChaos @Lifeiskitsch Shoot! I was finishing #GameofThrones & forgot chat! I’m late! #BTSM |
| Emily McIntosh @mcintose @TheLizArmy @adamhayden I am wondering if you have ever thought of or tried vibration insoles in your right shoes? They are generally marketed to diabetics with peripheral neuropathy, but the increased mechanoreceptor activation might help with cuing? #BTSM |
| Liz Salmi @TheLizArmy @lisaoleary524 Maybe it could be a community that includes patients, care partners and other supporters? Or would care partners benefit from their own communities as a type of "self care?" #btsm |
| Lisa O'Leary @lisaoleary524 @Lifeiskitsch Welcome, Molly! We'd love to hear your take on the topics! I know how important your physical fitness routine is to you! #BTSM |
 | 🧠Julia Robertson @Ailuj_Nostrebor @TheLizArmy @lisaoleary524 @adamhayden I had left side weakness post op but that has resolved #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch So... I have no physical challenges I’m guessing because of my tumor’s specific location. Mine is all, like, thinking stuff. Deep left temporal/hippocampus region is lots of stuff, but I never had physical noticeable issues. #BTSM |
| Lisa O'Leary @lisaoleary524 @TheLizArmy I'd give it some thought. I like the idea of us all being together, since dealing with BT's is really a team sport - but understand that the needs are likely different. #BTSM |
| Liz Salmi @TheLizArmy @Sabine_NJ @adamhayden I remember when I got my first Fitbit there were "challenge" communities. I am the least competitive person in the world, so the challenges made me anxious. But if the challenge was to "be the best you" and not comparative I would be down with it. #btsm |
| Lisa O'Leary @lisaoleary524 @Ailuj_Nostrebor @TheLizArmy @adamhayden So glad it resolved. How long did it last for post op? What helped most to regain strength? #BTSM |
| Emily McIntosh @mcintose @TheLizArmy @adamhayden I should specify that I am NOT a salesperson; I'm a scientist. I study balance and have many colleagues that are working on sensory perceptions related to skin, muscle, and joint forces and movements. #BTSM |
 | Danielle Gessler @DanielleGessler RT @EK_Drake: Coming up this Tuesday - June's #AYACSM tweet chat! #AYACSM = Adolescent and Young Adult Cancer Societal Movement - a multidisciplinary cancer community est. in 2013 CC: #btsm, #bcsm, #lcsm, #gyncsm, #childhoodcancer, #cssmchat, #hpm #hcsm, #medtwitter https://t.co/kRCDBRxzqV |
| Christine Choan, PhD 🧬🧠 @preopticarea @adamhayden However there is a stigma that I have felt when using walkers or wheelchair. It’s a real social experiment to see how people talk to you differently #btsm |
 | Matthew Zachary ✡️ 🇮🇱🟦 @MatthewZachary RT @EK_Drake: Coming up this Tuesday - June's #AYACSM tweet chat! #AYACSM = Adolescent and Young Adult Cancer Societal Movement - a multidisciplinary cancer community est. in 2013 CC: #btsm, #bcsm, #lcsm, #gyncsm, #childhoodcancer, #cssmchat, #hpm #hcsm, #medtwitter https://t.co/kRCDBRxzqV |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @lisaoleary524 @adamhayden I have had no noticeable *PHYSICAL* issues except, in retrospect, seizures. 2 for sure, & 2 some years earlier as well. Extreme fatigue. EXTREME. And mood changes over time. But seemed fine for many years. Things would be weird, then fine. So no way to know for sure. #BTSM |
| Liz Salmi @TheLizArmy @mcintose @adamhayden I have NOT tried that. BUT, I have used a neoprene sleeve on my knee as a way of "feeling" that part of my body and be conscious of it when doing strength training exercises. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @adamhayden A2 #BTSM Lots of physiotherapy time helped me to get back on my feet and independently mobile |
| Lisa O'Leary @lisaoleary524 This was DEFINITELY our experience when Patrick was in a wheelchair. I was baffled to see how people either stare like you're an alien or completely ignore you. #BTSM |
| Liz Salmi @TheLizArmy @adamhayden Oh snap! You really channeled @CBlotner_ with this observation. #btsm |
| Christine Choan, PhD 🧬🧠 @preopticarea @adamhayden Walking meditation really helps me! #btsm slow walking in nature |
| Lisa O'Leary @lisaoleary524 T4 It took a few years after Patrick died and my own PTSD tx, but I have finally gotten back to using physical movement to heal my health. I'm a spin instructor, I lift weights, and recently started Krav Maga and Muay Thai! Major wins considering where I was a yr ago. #BTSM https://t.co/5tXMqo3pFf |
| 🧠Julia Robertson @Ailuj_Nostrebor @adamhayden A1 #BTSM I had balance issues and then hemiplegia pre-op. Left side weakness post op. |
| St_Molly_AgentofChaos @Lifeiskitsch @adamhayden @TheLizArmy @lisaoleary524 Howdy!!! #BTSM |
| Liz Salmi @TheLizArmy @Lifeiskitsch @lisaoleary524 @adamhayden This is the first I've seen someone mention FATIGUE in tonight's chat. THIS IS HUGE. Fatigue plays a big role in the motivation for movement and exercise. Good point, Molly. #btsm |
| Emily McIntosh @mcintose @TheLizArmy @adamhayden That's great. If it's working then that shows promise for a variety of things you could try to help give more sensory feedback and cues for balance. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @adamhayden A3 #BTSM I was embarrassed to eat publicly. If my left side was not functioning well I would drop food, spill etc. I still get nervous about people seeing me eat! |
| Claire Snyman @clairehsnyman @preopticarea @adamhayden Yes, that's a great one! #btsm |
| Erica Robinson @eleighrobs @adamhayden T4/ Going to the gym, or even taking a quick brisk walk in between tasks, helps me relieve stress and just clear my head. My head. Haha! #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @adamhayden T4: I started rock climbing 1 year post diagnosis. Set a goal to climb a 5.9 and eventually, I did it!!! I don‘t do it to handle stress though. It simoly makes me happy! #btsm |
| Lisa O'Leary @lisaoleary524 @Ailuj_Nostrebor @adamhayden My husband had this problem as well! I had to feed him most of the time if he had to use utensils. He started eating a LOT of quesadillas while in the hospital... #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @lisaoleary524 @adamhayden The fatigue & symptoms seemed almost worse years ago, though, than it did as tumor grew & upgrades... is that even possible? Because in 06-08 i had more depression, mood changes, double vision once, & 2 “faints” (ex-husband related stress= seizures). But unnoticed til ‘16. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @adamhayden T4 #BTSM My biggest win physically was when I started running and completely my first 5Km run. Since starting university I have found the best way for me to manage stress and anxiety is to get up and walk it off. |
| Liz Salmi @TheLizArmy @adamhayden T4: As an answer, I am sharing this Instagram post from a few months ago. I like to do a lot of jumping around. I like the idea of being someone who is going to be 40 in a few months & still doing cartwheels. Being alive is awesome. https://t.co/bNzwB9oNL0 #btsm https://t.co/BjIIc9xVec |
| Low Grade Glioma Registry @gliomaregistry so true -patients all report it #btsm |
| Lisa O'Leary @lisaoleary524 Amazing attitude, and inspiring others as always, @adamhayden! #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors @gliomaregistry I still put clothes underneath hospital gown 🤣for Physical Therapy #BTSM https://t.co/cSOvxXD9hz |
| Liz Salmi @TheLizArmy @lisaoleary524 I love that you are feeling good. Your exercise posts make me excited to go out and do my own work! #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @lisaoleary524 @TheLizArmy @adamhayden It lasted for a few years post op and was a slow process working with my physio to regain strength and control. It isn't 100% of what it used to be but it is good enough now that no one notices unless doing an neuro test :) #BTSM |
| Lisa O'Leary @lisaoleary524 RT @TheLizArmy: @adamhayden T4: @adamhayden T4: As an answer, I am sharing this Instagram post from a few months ago. I like to do a lot of jumping around. I like the idea of being someone who is going to be 40 in a few months & still doing cartwheels. Being alive is awesome. https://t.co/bNzwB9oNL0 #btsm https://t.co/BjIIc9xVec |
| Low Grade Glioma Registry @gliomaregistry impressive! and remember exercise has known association with improved cognition #btsm (as well as abs) |
| Lisa O'Leary @lisaoleary524 @gliomaregistry Haha, yes I have noticed improvement in both! 🤣 #BTSM |
| Erica Robinson @eleighrobs @adamhayden @lisaoleary524 Thank you guys for making this work tonight, without the @BTSMchat account! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch T4 (never actually checked what question is) I have taken another follow-up neuro psych exam, just to kind of compare with pre-craniotomy/rad/chemo neuro psych exam. I was given some ideas on some word finding tricks I can do & activities that might help with words/memory. #BTSM |
| Emily McIntosh @mcintose @adamhayden A4. I signed up for a 5km to force me to exercise & train on days when I didn't feel like it. I knew it would help with depressive and digestive symptoms (and it did). Completing the race 6 days after finishing chemo was a big win! #SlowAndSteady #BTSM |
| Liz Salmi @TheLizArmy @lisaoleary524 @Ailuj_Nostrebor @adamhayden Note to self: quesadillas are an accessible food option. #BTSM https://t.co/M8EIs70RL2 |
| Lisa O'Leary @lisaoleary524 @TheLizArmy I'm so glad! I'm sure they bother some people but I get so much positive feedback - I'm a real person who has struggled, and it has been hard fought to get back into shape. I know people can relate, so haters be darned! :) #BTSM |
| Lisa O'Leary @lisaoleary524 YAAAAAAS!! You guys this is going to be GREAT! #BTSM |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @Ailuj_Nostrebor @adamhayden SO. MUCH. CHEESE. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @TheLizArmy @lisaoleary524 @adamhayden Hooray for 1 handed foods! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch T4// I’m back at gym like a beast. Running, walking the dogs, & lifting weights. Aiming to lose my long-lasting steroid fluff. Hope to do a powerlifting competition once. Just to see. Haven’t picked up that barbell in a meaningful way in years. Looking forward to it. #BTSM |
| Erica Robinson @eleighrobs @adamhayden @lisaoleary524 @NBTStweets Set my account up already! This is exciting! #BTSM |
| Lisa O'Leary @lisaoleary524 @adamhayden @TheLizArmy @CBlotner_ @Sabine_NJ @JeremyPivor I do feel like I was operating as two people - #BTSM co-mod and @warriors fan! 🤣 |
| Liz Salmi @TheLizArmy @adamhayden @lisaoleary524 @CBlotner_ @Sabine_NJ @JeremyPivor THANK YOU @lisaoleary524 and @adamhayden for putting together such a great chat. I really needed to talk about this stuff. It has been nearly 11 years & the physical impacts are still a thing for me. It's such a part of my life I almost forgot the journey I have been on. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @MakesItFancy Yes! I have a whole page & I’ll take a photo and send to you. If you don’t hear from me by noon EST tomorrow, PM me. I might forget. But if you send me a brain emoji or something, I’ll totally remember! #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors Interesting! The thinking can be very challenging. Memory is literally shot. Left brain no joke🧠 #BTSM |
| Erica Robinson @eleighrobs @adamhayden @lisaoleary524 @TheLizArmy Now, THAT would be a cool MRI outfit! Although, the mask part is already covered in the tube, and those are too many accessories. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @KickBrainTumors Right? I think my brain is handling itself in a pickle pretty darn well, but it definitely has broken parts. That second neuro psych exam proved it, if there was any doubt. #BTSM |
| Emily McIntosh @mcintose @adamhayden Any movement, no matter how little is helpful. You don't have to run a marathon to exercise. Focus on what you can do - if it's tapping your toes to music, put on your favourite tunes often. Find something you love, even better in a social group, & you will reap the rewards #BTSM |
| Erica Robinson @eleighrobs @TheLizArmy @adamhayden @lisaoleary524 Right? The belt? Also, metal. No can do. #BTSM |
| Lisa O'Leary @lisaoleary524 Thanks for joining us tonight! All the love to my BT fam! #BTSM |
| Christine Choan, PhD 🧬🧠 @preopticarea @TheLizArmy @Lifeiskitsch @lisaoleary524 @adamhayden Absolutely fatigue is the number one problem to deal with #btsm |
| Emily McIntosh @mcintose @adamhayden @lisaoleary524 @TheLizArmy @CBlotner_ @Sabine_NJ @JeremyPivor Thanks #BTSM gang! Now, back to the Raptors game. #WeTheNorth |
| Lisa O'Leary @lisaoleary524 @mcintose @adamhayden @TheLizArmy @CBlotner_ @Sabine_NJ @JeremyPivor You mean, the Warriors game of course! #BTSM #DubNation ;-) |
| St_Molly_AgentofChaos @Lifeiskitsch @preopticarea @TheLizArmy @lisaoleary524 @adamhayden My only issue is non-cancer folks saying, “me too.” Lol! Other cancer patients, sure. But, no, 80-year old dad— you’re 80. I’m 38. You’re supposed to be tired after day playing golf! I’m not supposed to be tired two hours after 8 hrs of good sleep & drinking cup of coffee! #btsm |
| Lisa O'Leary @lisaoleary524 @eleighrobs @adamhayden @BTSMchat We did our best, thank you for your patience! Looking forward to having it fixed so we can reach more folks! #BTSM |
| Christine Choan, PhD 🧬🧠 @preopticarea RT @mcintose: @adamhayden Any movement, no matter how little is helpful. You don't have to run a marathon to exercise. Focus on what you can do - if it's tapping your toes to music, put on your favourite tunes often. Find something you love, even better in a social group, & you will reap the rewards #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors Early morning. Allergies kicking in. Have a goodnight everyone. Great brain tumor community! #BTSM https://t.co/UecUbFqs50 |
| Christine Choan, PhD 🧬🧠 @preopticarea RT @Lifeiskitsch: @preopticarea @TheLizArmy @lisaoleary524 @adamhayden My only issue is non-cancer folks saying, “me too.” Lol! Other cancer patients, sure. But, no, 80-year old dad— you’re 80. I’m 38. You’re supposed to be tired after day playing golf! I’m not supposed to be tired two hours after 8 hrs of good sleep & drinking cup of coffee! #btsm |
#BTSM content from Twitter.