Inspiring To Aspire

All your tips are organized by 5 categories:

Emotional, Intellectual, Social Physical & Other

*CLICK ON THE ‘+’ TO EXPAND

Mindset, perspective & mental digestion

THE FOLLOWING TIPS ARE SUGGESTIONS – Do whats safe and right for you!

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19. Traveling on a Plane? If experiencing any anxiety about crowds/confinement you can always board last – less time on the plane. (Melissa ITA)

18. Meditation/ Yoga combined with physical therapy has worked immensely well for me – there are lots of resources on youtube (Yoga classes, including chair yoga, and yoga for TBI, as well as guided meditations). (Ursula, Florida, USA)

17. Write out a list of some things that make you the incredible YOU- whatever it is, dedicate time to it of these things all about you. It’s a gentle reminder you are awesomely you.  (Saira)

16 Don’t try to read your own MRI! We are not the trained professionals like our neurosurgeons do there job. We wouldn’t ask them to do our job and understand it (Juliann G, Ontario) 

15. Ask all the questions you want. Regardless if you think they are dumb…my biggest concern when I met with my neurosurgeon was if I had to take my nail polish off! (Juliann G, Ontario) 

14. Social Cleansing. Is your mood affected by what you hear and see? Mute or rid yourself of toxic people. You can ‘unfollow’/’snooze’ people on your socials. (Melissa ITA)

13. New Hobbies: Start a new hobby based on your interests- something you CAN still do and brings you joy. Surely can find something if not locally than something online. (Andy)

12. Jot your stories/feelings down all in 1 place. Sometimes writing things out can help digest. Ex “Notes” section in your phone, daily agenda or separate blank booklet (dollar store, babe!). (Melissa of ITA)

11. Make S.M.A.R.T. goals for yourself daily, weekly or monthly (S.M.A.R.T.= (Specific, Measurable, Attainable, Realistic & Timely). Check off when you accomplish them (Karen Vancouver Can)

10. Celebrate every success: Whatever it is- be proud with every step you take that is an improvement/ milestone. Baby steps. (Melissa of ITA)

9. Help Others: Does helping others who are also struggling make you feel good? From holding a door open for someone, to a buying a stranger their $2 beverage for the person behind you at a coffee shop. 

8. Volunteer at a committee/event . *Feeling wanted and having purpose could help -do what you love to do. 

7. Humour. *Joking about personal adversity isn’t for everyone, but works for me* So much loss. I did stand up making fun of myself,  “I’ll laugh at the same joke you tell me every day, because I’ve heard it for the first time” (memory loss). (Melissa of ITA)

6. Brighten someone else’s day by doing a nice thing for an unsuspecting stranger. Good deeds echo, AND you will release some ‘good feels’ hormones (Melissa of ITA)

5. Gratitude List or Journal: what are you grateful for in your life? Write it down daily/weekly or monthly. Note the WHY’s for that particular person? place or thing that hit you in the feels that moment. 🙂 write it down, and feel your mood lighten, even a bit.

4. Caffeine can give your body the illusion/trigger anxiety. Eeek! I love my coffee, but have to switch to decaf once and a while if feeling anxiety.

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PASS THE TIME (MIND DISTRACTION/ ENTERTAINMENT)

4. Apparently some hospitals offer music to listen to while you’re getting your scan done? Awesome! (None in Toronto I’m familiar with) (Melissa ITA)

3. ABC game: While in the MRI machine, pass the time by: Using the alphabet, pick a theme and correspond each letter to that theme. Ex: things I love, Aunt, Beer, Candles, you get it…. (insults I find the most fun… what’s E?). Include a loved one that can pick a theme before you go in. (Melissa ITA) 

2. Concentrate While in the MRI machine, pass the time by: going through one of your favourite movies or songs from start to finish picturing details/words/ fabrics, colours/sounds etc. Me? When Harry Met Sally (Melissa ITA) 

1 It’s quite LOUD while in an MRI machine. Sometimes I picture being in a club that’s playing techno- lol not my taste in music but helps (Melissa ITA) 

 

HELP OTHERS:

4. Compliment/Thank staff: When some people are stressed they get grouchy, so its nice to show them (and others) gratefulness (Melissa ITA) 

3. Feedback: give the technician a little feedback (good or constructive)… newbies are still learning or some seasoned staff have worked in the same job since wall paper was 1st popular- perhaps a polite reminder is needed? (Melissa ITA) 

2. Going to be late? Call: Manners people! There’s a busy schedule to follow, so if you’re going to be late, they will slot you in on the next one if the person to go after you is early (Melissa ITA) 

1. Stranger camaraderie: Does the person beside you in the waiting room look to be more nervous than you? Sometimes a simple smile or brief comment can make a big difference. We’re in this together, what ever ‘this’ is. (Melissa ITA) 

 

CONVENIENT COMFORTS:

5. Claustrophobic? Theres a ‘hockey-mask-like’ thing that goes over your face to keep you still. I close eyes the entire time. I haven’t opened my eyes once in 10 years of MRIs. Works for me. (Melissa ITA) 

4. Contrast injections: if you’ve been told in the past you have small veins, TELL THEM that! They may use a baby needle aka ‘butterfly’ needle. (Melissa ITA) 

3. Will you get a contrast dye injection? If you see 2 types of tape: the paper kind is SO much kinder to your arm hair! (Melissa ITA) 

2. Keep hydrated! You may want to have a bevy (or 4) the night before your MRI to diffuse some stress, so KEEP HYDRATED to keep your veins plump and juicy for the vampires! I mean, nurses/assistants (hehe) (Melissa ITA) 

1. ‘Dress for success’: Leave your jewelry and strappy/buttony/tight clothes at home. You’re going to change into a gown wearing just your undies, there’s no sense in wearing more than you need to! (Melissa ITA) 

6. About 8 months post-op, slowly walking again, Mom and I go out shopping. I bought a handy bowl/milk storage container for when I returned to my work- without the faintest idea I’d never be fit to work again. Sincere thanks to Mom for not saying anything when I bought it xox (Melissa ITA)

5. After “the” surgery, I had to move back to Moms while getting back up walking again. I used to sleep on top of the covers with a spare blanket over me. It occured to me later I subconsciously did that with the mindset I’d be up and independent in no time- wasn’t stating long. (was there for 1 year!) (Melissa)

4. When started public speaking, I tricked my brain by repeating over and over in my head I wasn’t feeling nervous, I was feeling excited. THIS changed my perspective: from feeling fear of failure to feeling free from judgement. (and seriously, what kind of monster would judge you for trying something, RIGHT?! (Melissa ITA)

3. Perspective: Years ago, my friend Val said to me, “Mel, you’re NOT your brain tumour; a brain tumour happened to you” – This was a lovely reminder I was more than my diagnosis. 10+ years later, and I still remind myself. (Melissa ITA)

2. Mindset: I used to call my doctor appointments as ‘meetings’. It sounds silly, but subconsciously it gave me some control back- a reminder I’m an active member of my care team. (Melissa ITA)

1. Creating good out of the bad: Easier said than done, I know! I couldn’t play my guitar anymore, so instead of just getting rid of it, I raffled it off and donated the money to the BTFC. Knowing someone else is out there enjoying it gives me peace. (Melissa of ITA)

13. ‘Why do we fall?…. So we can learn to pick ourselves up – Movie quote from Batman Begins <2005> (shared by Sarah M)

12. It’s OK not to be ok. Just don’t sit in it for too long- life is short. (Melissa of ITA)

11. Get to know your Doctor’s assistants name so you can be more personable: they are the gatekeeper to access your care. Be nice- don’t “bite the hand that feeds you” if feeling unwell/frustrated. (Melissa of ITA)

10. Stop…Focus and LISTEN. This is about my lack of focusing on one thing and also listening to my gut” (Juliann G, Ontario)

9. You HAVE to advocate for yourself. Push hard for the tests, answers, etc. the squeaky wheel gets the grease. (Gio DeRos, Osoyoos BC Canada)

8. Have grace with yourself.  (Sandy Stare, Appleton WI)

7. You HAVE to advocate for yourself. Push hard for the tests, answers, etc. the squeaky wheel gets the grease. (Gio DeRoss, Osoyoos BC Canada)

6. If you need help don’t be afraid to ask for it. Most of your family and friends would love to help but they don’t know how…so tell them. (Linda Rickford Surrey BC)

5.  Allow yourself to visit the dark place on your down days, just don’t unpack your bags and live there. (Linda Rickford Surrey BC)

4. Stop putting yourself down.. eventually your soul will believe it! (Melissa of ITA)

3. Embrace the good and cruse through the bad day by day. Easier said than done, I know- but life is short. I know I know. (Melissa ITA)

2. You are your BEST advocate and WORST enemy. Speak up, or settle down: it’s your call. If your soul is too tired, reach out to your best support so they can advocate for you. (Melissa ITA)

1. Manage Expectations of yourself, other people and things. Despite how you want something or someone to be, facts are facts. (Melissa ITA)

Organization, concentration and... ummm... memory

THE FOLLOWING TIPS ARE SUGGESTIONS – Do whats safe and right for you!

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13. People gasp when they see the desktop on my laptop- it LOOKS like a disaster, but I’ve created a custom background using blocks of colour which PRIORITIZE the CATEGORIES of daily life ex. Red= Priority, Blue= Work, Green= Health/Community, Orange= this website and my posts on socials. (How to create: Create a landscape sized page with your custom colours, then click “Apple>System Settings>Wallpaper”. Contact me if need more help with this 🙂 (Melissa ITA)

12. MOVED TO #4 IN ‘MEMORY’

11. Have more than one medication and can’t keep them together? Leave them in the same place every day, and tie/tape the bottles together! (Melissa of ITA)

10. MOVED TO ‘MEMORY #3’

9.Organize your desktop by creating a colour coded blocks image as the background. This helps me stay as organized-ish by saving items to desktop in the right location. (Otherwise, out of sight, out of mind).

8. Organize your email by category/priority to avoid losing emails.

7. MOVED TO #2 IN ‘MEMORY’

6. Clean up your office/craft space: so can visually find things easier. Not only does it keep me organized, cleaning also is therapeutic (Shh! Don’t tell anyone I said that)! 😉 (Melissa of ITA)

5. MOVED TO # 1 IN ‘BRAIN EXERCISES’

4. MOVED TO #1 IN ‘MEMORY’

3. If I don’t see it, it doesn’t exist! I tape information I frequently use (& forget) on my coffee table & laptop! (Melissa ITA)

2. Symptom Tracker: Some find it helpful to track your symptoms: gage the intensity, time for your doctor. This could also go in that blank booklet! (Simone Bennett, Chicago USA)

1. Buy/create a blank notebook & agenda (dollar store) to put all your notes, to do’s, reminders etc in it….and categorize it with custom labels Ex Work, Home, Priority, Groceries, To Do. Key: everything in one place.

  • bring it with you everywhere you go
  • make notes on the back page of dates for the next year (ex.medical appts)
  • New year: copy significant dates from your old to new

 (Melissa of ITA)

4. Forget the name of your doctor’s secretary/assistant? As a reminder, I’ve programmed their name in brackets beside my doctors name. WHY? Because building a warm rapport with your healthcare assistant has endless benefits!! Having that ‘human connection’ sure helps both side when dealing with sometimes difficult situations… Do I need to share more benefits?! (Melissa of ITA)

3. Forget your passwords? I do, every day!  Frustrating. Tip: type them out on your computer, organize them alphabetically, print off and have them taped in your daily agenda/ note pad. Update as needed. (Melissa of ITA)

2. See something you don’t want to forget? Consider the camera on your phone as your ‘brain backup drive’ haha (Melissa of ITA)

1. Medical Appointments: Prepare a list of questions you have written (in your agenda or phone) and make sure you ask them all! I would ask all my questions while respecting their time.  (Melissa of ITA)

4. I don’t know if this is something but my wife and I always watch Jeopary and try and guess the answers (anonymous)

3. Playing cards gets harder when I don’t play them in a long time. So I keep doing it. It’s something. (Kiara P) 

2. We’d play the ABC game when kids driving up to the cottage. You pick a them and one by one everyone answers with a word that corresponds with the letter of the alphabet when your turn. The catch is you have to recite every answer everyone said in order to progress. (Pamela Bancroft Ont Canada)

1. I like playing Word Games on my cell – it helps keep my cognition sharp-ish. ‘If you don’t use it, you lose it’  (Melissa of ITA)

As if BASIC COMMUNICATION wasn't garbled enough...

THE FOLLOWING TIPS ARE SUGGESTIONS – Do what’s safe and right for you!

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8. Sometimes I go community events and sit at the back and don’t say anything to anyone. Just to get out. (anonymous)

7. It’s not a tip but I deleted my facebook. Too many petty problems and whining. Stick to the good people you have in your life (Nathan A, Ont Canada)

6. I like the app Meetup, I can connect with others and they don’t know me. (anonymous)

5. Volunteer for something you like to do to make new friends. I don’t talk to my old friends since it happened. Ravy Florida USA

4. Alberta Health Services has developed an app called My Care Conversations , encouraging patients to record their appointments.
Interestingly, when you read about the app it states “You do not need the clinician’s consent to record.” Of course, asking first would be the polite thing to do 🙂 Also, it contains space to note your questions leading up to your appointment. Click HERE for the link. (Janet H,  Alberta Canada)

3. I tell my diagnosis early in a new relationship. Its part of who I am. If this scares them away, better to know now than later.  (anonymous)

2. Know what primary ‘love language‘ you are? (Search online: ‘5 languages of love’) This might help communication more if we know how we/others express they care 1) Being given a gift, 2) Having a chore done for you, 3) Words of affirmation, 4) Physical (ex hugs), and 5) Quality Time. Some say knowing what your loved one’s is, may help. (anonymous)

1. Delegate: *also shared for loved ones* Understandably, it can be a frenzie at the recent diagnosis ex getting paperwork filled out, facts straight etc while heavy heartache for all involved. Whoever asks to help, be sure to pair them with something they are good at/trusted with ex Filling out paperwork, dropping off food, driving to appointments etc (Melissa ITA)

Meaningful motions sure can be affected ex if have crummy balance

THE FOLLOWING TIPS ARE SUGGESTIONS – Do whats safe and right for you!

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Eating:

1. ‘Thrifty Melissa to the rescue!’: Using a measuring cup is an inexpensive way to enjoy soups/drinks to give better support if balancing liquids is an issue or sitting away from a table (Melissa ITA)

Grooming (showering/bathing)

2. If you don’t have the energy to shower, just wash your face. Listen to your body and be kind to yourself. (Linda Rickford Surrey BC)

1. Showering in a tub: Non-slip  matts/stickers are available to buy online. Worth the added safety! (Melissa ITA)

Mobility

3. Are you an Ontario resident? You may qualify to have financial support to get a taxi to take you to your medical appointments- or, anything else for that matter https://www.ontario.ca/page/ontario-disability-support-program (anonymous)

2. No longer able to drive? If a safe option, how about a 3 wheeler bicycle?! Dress it up the way you like and ride it proud like a peacock! Maximize your independence and (if safe) good exercise!  (Melissa ITA) 

1. Walking: Have balance issues? Ask your doctor how to get arch support inserts for your shoes *and find out if covered under your insurance or any support programs you’re on! (Melissa ITA)

Using the Toilet

2. Check out your local mobility store for raised toilet seats/handle bars if balance/toilet height is an issue. Also, talk to your doctor if covered. 

1. Constipation: Pain killers can be a blessing and a curse- drink tons of water!. *talk to your doc re safety & pain killers.

THE FOLLOWING TIPS ARE SUGGESTIONS – Do what’s safe and right for you!

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VISION

2. Always having sunglasses with me gives ease when there are bright lights and need to put on a pair ESPECIALLY every eye doctor appointment! (Melissa ITA)

1. Do you spend hours a day looking at a computer seen? An optometrist recommended the 20:20 method: for every 20 minutes looking at a screen, take a 20 second break on your eyes- look away! (Melissa ITA)

HEARING

1. Sensitivity to noise volume/pitch? Carry a set of ear plugs with you at all times when starting to be more social. I love checking out local bands, but the noise it too much- no shame in wearing them! (Melissa ITA)

TOUCH/ FEEL

1. Keep your head warm in winter and cool in the summer. It will prevent headaches and all the symptoms that go with them. (Corina, BC Canada)

2. Check out free certified  ‘Chair Yoga’ classes online (anonymous)

1. Do something you STILL can and LOVE to do! Ex Not a fan of traditional exercise but I like going for walks and taking my 3 wheel bike out. (Exercise also releases feel-good hormones into your body!) (Melissa ITA)

A place to share tips that don't have a category... yet!

11. I felt pushed away because I wasn’t family but I wanted to be there. I bought a card and had everyone in the office to sign it. Maybe this will help someone for an idea. (Beverly Wazzy NS Canada)

10. She would refuse everything offered. After a while, I would just pick up a coffee for her and put it in her hand while greeting her, commenting on something mundane. (Heather)

9. As a Mum, my coping strategy, although I didn’t see it as that at the time, was to fundraise; campaign for more awareness especially amongst the medical professionals, go to conferences to be as well informed as I could be and to help others. I joined a charity as a trustee and I admin and monitor a Fb support group for those with low grade gliomas. (Linda Rickman, Surrey BC)

8. Since my wife and I are divorced it was hard knowing what my daughter wanted or needed. I’d drive her to and from her physical therapy appointments. Usually in silence but she always gave a big hug after her appointments. (Luca Orillia Ont)

7. I regret not reaching out after hearing from his brother later that he (my friend with a BT) was lonely. I should have reached out. I guess my tip is to reach out to that person just to say you know and are thinking about them. (Anonymous Montreal).

6. Accessibility: I would make things easier for my daughter before she even asked for it. Example for meals I’d set the table with the salt and pepper close to her plate, so she didn’t have to ask for it as wasn’t able to reach from her wheelchair (Pam B)

5. Distraction: Sometimes I would bring up something unrelated in conversation to distract while waiting with her in the doctors office. Sometimes it worked, sometimes it didn’t. Patience. (Pam B)

4. Didn’t know what to say to my neighbour when she told us her husband had a brain tumour and starting treatment. I dropped off some books I knew he’d like on the front porch with a small note. (Zarah Huntsville)

3. I created a private group on Facebook with just my sister (who had recently had BT surgery). This was a place for us to connect without having to talk on the phone if having a bad day. It was a safe place to vent. (Jennifer S)

2. I’m not good with words so just did practical things I knew she’d appreciate, like dropping off her favourite food, filling out her government support paperwork. I knew she loved the dollar store, so I brought a huge bag of random things. (Ted M)

1. Delegate: The first few weeks were a blur. Whoever asks to help that you trust, pair them with something they are good at ex filling out paperwork, dropping needed items, helping with driving to appointments when couldn’t get work off. (Pam B)

6. Ask your phone company provider if they offer a discount for those who are on ODSP (Ontario Disability Support Program).  (Melissa ITA)

5. Cost for designer meds is expensive if you have no insurance! Be sure to ask your Doctor if its OK your Pharmacist can recommend a no-name version (Melissa ITA)

4. Check with employment laws where you live, but depending on how long you’ve worked at a place, if you had to leave after having your BT diagnosis, you could be entitled to severance pay. (Melissa ITA)

3. Did you have to break your lease because of a surprise BT surgery? Check out if you have a ‘compassionate release’ clause. I saved a boatload of money (Melissa ITA)

 

2. Also, Ontario lovelies! Heard of ODSP? Ontario Disability Support Program. See if you qualify for $ if having a hard time managing on your own (this also include transportation costs to medical appointments). https://www.ontario.ca/page/ontario-disability-support-program (Melissa ITA)

1. Hey ONTARIO LOVELIES! If you have a disability parking pass, than you get 50% off for all Ontario Camping Parks (2022, anyway! *woop woop (Melissa ITA)

THANK YOU, THANK YOU, THANK YOU, THANK YOU. Whoever you are, who ever is reading this, THANK YOU for everything you DO and DON’T do, thank you!!!

Any words of praise AND constructive feedback (which will flip everything with ‘thank you for’. No provider names or names of offices or hospitals will be shown here.

  1. THANK YOU for …..

Suggestions?

Change of clothes, list of medications, write down prime numbers, phone charger, 

 
2. Weekly bloodwork: Small veins? Be sure to ask for a baby/butterfly needle (Melissa ITA)
 
1. There was warning I may feel nausea/throwing up from treatment, so when the feeling was strong I made sure to eat something I didn’t like… that way I’d already have an aversion to it anyways. Haha (Melissa ITA)

1. Alberta Health Services has developed an app called “My Care Conversations” , encouraging patients to record their appointments.
Interestingly, when you read about the app it states “You do not need the clinician’s consent to record.” Of course, asking first would be the polite thing to do 🙂 Also, it contains space to note your questions leading up to your appointment. (Janet H, Alberta)
https://www.albertahealthservices.ca/info/Page16144.aspx