Brain Injury Awareness Month, March 2017

The first time I saw a brain injury awareness video was during Brain Injury Awareness Month. I thought it was wonderful. Every year, different ones came out, and they were all wonderful . I dreamed of one day making my own with beautiful graphics with brain Injury facts set to music and I’d be singing again. You see, after my brain injury in 2010, I lost my ability to sing. I wrote it it in this blog. It was just seven months that I reblogged my sadness over not being able to sing; https://www.google.com/amp/s/janicetindle.com/2016/05/21/ah-to-sing-to-dream-by-janice-tindle/amp/

So, to have the two come together at the start of this year was truly a happy moment. It happened quite by accident. One day, while in the waiting room of a doctors office, I heard on the radio one of my favorite songs, The Lennon- McCartney song ” The Long And Winding Road.” I hadn’t heard it in a very long time and I had forgotten just how beautiful it was. That night, I looked it up on you tube and started to sing along. To my great surprise and delight, I was not displeased at how I sounded! Not great, but not bad either! What makes this so amazing is that a short time before this night, I was being assessed very throughly in because of a suspected stroke. 

You see, I woke up one morning with a frightening pain in on the left side of my head and a severe pain throughout. I sat up and started to speak to tell my husband that I thought it was trigeminal nerve pain, but, all that came out was a bunch of gibberish. Was it migraine or stroke? Well, after not one, ( in which it happened again) but two trips to two different hospitals, I was told that I probably had had a couple of mini-strokes. 

I didn’t appear to suffer any great damage from the incidents, ( although I did find out I few things about my health that I didn’t know) but two wonderful things happened; my ability to sing again, and my vision actually improved enough that it warranted a new prescription! That is amazing! I found one other story online of a man whose vision got better after an actual stroke, so I guess it does happen! 

Anyway, I recorded myself just for my own private viewing to see what I really sounded like and if I could improve at all. It came out satisfactory, so I then made a few notes on a pad and added them as I had seen others do and recorded it because I wanted to share my joy with my other brain injury/movement disorder/ TIA survivors to inspire them to never give up! 

So without further ado, here’s my simple little video. I hope you like it. And thanks to John Lennon and Paul Mcartney for writing such a beautiful song. The song in the background is a karaoke and not the The Beatles record. I do not own the rights to the song. https://youtu.be/R6oAsc25s8Q

Janice Tindle, 2017 photo owned by Janice Tindle

Posted in brain injury, coping skills, dementia, Dystonia, human interest, inspirational, Inspiring, life changing, life changing events, motivational, self, singing, tindle, traumatic brain injury | Tagged , , , , | 4 Comments

Brain Injury, Dystonia and TIA Awareness: Year of Self-Care   by Janice Tindle 

This is my first blog post of 2017. I’ve declared this my “Year of Self-Care .” Last year, I got off track a bit, but it’s never too late to change, so I’m getting my rountine exams out of the way at the start of this year. That way, if something needs addressing, it won’t interfere with any future plans. Best to find out now if something is wrong before it gets out of hand. There really isn’t a downside to self-care, so I’m embracing it. I’ve already seen how much benefit as come from the change. 

So here’s what I devised for myself. I’ll share it with you all. I’m not telling you what to do, I wrote to myself as if I was talking to me, the reader. If it pleases you, you’re welcome to join me. 

One of the first things I did was to make the decision to leave Facebook. I’m still working on deleting my account and pages, but, in light of recent events that I happened to see on the news as I sat in a doctor’s waiting room, I’m so happy that I’ve spared myself that unnecessary drama. 

The next thing was reestablishing my former mindset of taking the time to the niceties for myself again. Hair, mani-pedi, wearing my favorite clothes and jewelry, just for me, even if I’m not going out, because it makes me feel happier. Remember ladies, when as a little girl you played dressed-up? It was fun. It’s still fun. It doesn’t have to be much, just a switch from those ratty robes and sweats into slacks and sweater is a huge plus! Switched out those slippers for “outdoor shoes” just to see if I liked how that feels. 

Diet and nutrition. As healthy as I can get without it being a burden. Same with exercise. Every positive is a positive. I congratulate myself for each improvement I make and then make it part of my regular routine. 

Another thing is making and keeping my doctor appointments and therapies. That’s a tough one. It’s quite a burden to plan, get ready and go when you never know how you’ll feel. Responsibilities come up, emergencies happen, dystonia happens, migraine happens, but, keeping these appointments, especially the physical therapy, is important, so I’m determined to follow through and get my body stronger than it is right now. 

My health is my most precious possession. I think everyone should feel that way about themselves. Every year should be the “Year of Self-Care.” For me, I’m committed to this promise, so I’m expecting to be healthier next year than I am right now. 

Which brings me to my new video. It’s about the art of self-expression, creativity and that wonderful self-care; respite. The heart and mind need a break of constantly being absorbed in responsibility. 

I have been wanting to do a brain injury awareness video for years. I had big plans for a big project, but last night, I made a very simple, but heartfelt little video. Part of self-care is meeting your goals in a simple fashion. Big productions are wonderful, but not doing something just because you can’t do it up big, is denying yourself the joy of having experienced it on a small scale. Sometimes the little joys are the ones we remember most fondly.  I hope you like this little video. Please feel free to share it with anyone you feel needs encouragement. Thanks, Janice 💚

Posted in brain injury, coping skills, disability, duty, Dystonia, honesty, human interest, humanity, inspirational, Inspiring, motivational, self, tindle, traumatic brain injury | Tagged , , , | 2 Comments

How To Love Someone With Dystonia  by Janice Tindle 

I can’t remember the last time that I gave someone a great big exuberant hug or got one. I can’t remember caresses, being held close or engaging in that enthusiastic wrist holding handshake. I can’t remember group dancing, or even being held close on the dance floor. Well, I can, but I won’t let myself, because it makes me too sad. 

Since I got dystonia, I can’t do a lot of things that I used to do, and people can’t touch me in the ways they’d like; hugging, holding, squeezing.

But that doesn’t mean that I can’t be loved.

Let me explain; 

The other day, as I was getting Botox, I screamed out as the needles went in on the left side of my head, particularly around the trigeminal nerve and jaw. The neck and shoulder hurt as well. ” My whole left side hurts,” I said to the doctor. He tried to distract me by joking. ” I could have Kim, ( the nurse) start singing. She’s always breaking out in song from some musical.” She laughed and said, ” Sure, what do want to hear?” My husband, Dan, who was sitting in a chair across from me said, ” Why don’t you sing something from, ” Left Side Story.” I smiled, and chuckled. He’s good at that, when things get tough. 

Make us laugh. If just for a moment.

I can’t physically do the things I wish I could I do, like running the vacuum or scrubbing the floor. 

Be our bodies. Do for us what we no can longer do. 

The old standbys still apply, people in chronic pain still like pretty things. 

Show us you care. Bring us flowers, or a gift bag of something wonderful to make us feel that you still have lovely feelings for us. 

And speaking of feelings…

Write us a love letter, send a friendship card, or just write an old fashioned letter reminding us of how much we mean to you. 

Just because we have dystonia, we’re not dead. We’re still here, and we’re lonely a lot. 

Include us. We miss your visits, phone calls and invitations. 

It takes a lot courage to live with dystonia. It takes a lot more courage to keep being strong when your loved ones walk away because they are ignorant about your condition. Which brings me to the biggest one…

Believe us. Dystonia is a very painful neurological movement disorder. There are many forms of dystonia. Ask us what kind of dystonia we live with everyday. Educate yourself about dystonia. Ask us to recommend a book about dystonia. There are several online that are quite good. Go to a website like DMRF.org or http://www.dystonia.org.uk.  Join or come to a support group for friends or families of people with dystonia. Write “dystonia” in your search engine box and start reading. Watch YouTube videos. Watch a documentary or news report. We will be happy to help you learn about all the complexities of dystonia in all its many forms, but we’ll be happy if you just read enough to help make our lives a little easier. 

You’ll find our options are limited and the research is too, so look into supporting us in finding a treatment of something more than just symptoms. Oh, and a cure would be nice. 

Support us.  We may ask you to help raise awareness or support research. Please do. We’ll feel uplifted and so will you. ❤️️

Posted in humanity, traumatic brain injury | 16 Comments

#HAWAC #Writing Success ” I didn’t give up, I finished the #wegohealth challenge!” by Janice Tindle 

 The WEGOHEALTH Activist 30 Day Writing Challenge, Day 30! 

“It’s the last day of HAWMC! Congratulations, you completed 30 days of writing! Take this last post to reflect on your health advocacy journey and set a goal for the next year. Perhaps you want to try a new platform for your activism, attend a patient summit, or start a podcast. Remember, “
goals high, and don’t stop till you get there.”
 

Well, I did it! Thirty posts in thirty days! This is a first for me. I tried to do a writing challenge last year, but my hands were could hardly function. They are still a problem, but, I’m learning how to manage my daily use effectively. I’m always thinking about ” arm use time.” 

I have three things I fantasize about doing at least once that would be really fun and promote health advocacy: 

1. Do a stand up routine 

2. Write a really good book

3. Have a online radio show

Those are the fun things! My other goals are much more serious. 

1. Find ways to serve God more fully 

2. Get healthier and stronger 

3. Become a better caregiver and advocate for my mother

I’d like to thank WEGOHEALTH for this amazing challenge. I’ve thoroughly enjoyed it and I’ve learned a lot about myself and others. With the use of this platform, I was able to get things off my chest that I wanted to say for a long time. 

I also received many, many wonderful comments that have made me feel very encouraged to keep writing and being a voice for those who can not put their pain into words. 

I want to write more of the uplifting and inspirational stories that help people through the rough hours. I hope people will read them. ❤️️

Posted in Brain injury radio, caregiving, coping skills, disability, honesty, hospice, inspirational, Inspiring, motivational, self, thought provoking, tindle | Tagged , , | Leave a comment

#HAWMC #TBI ” The Thoughtful Vegetable, Angela Ronson’s blog” by Janice Tindle 

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 29

“Have you checked out fellow HA’s pieces for our HAWMC? Choose one of your favorites and repost it to your blog. Be sure to include a few sentences on why you love this piece!”

Who do I choose? Well, I have to go with loyalty on this one. I nominated Angela Ronson. I challenge her to do the 30 days, and she did. She is also a fellow admin on The Traumatic Brain Injury Resources FB Page and when I leave FB at the end of the year, she’ll be there backing up Trina Chambers- Bradlee. That gives me peace. She has an amazing story, truly unique. Angela is definitely the one blog everyone should read because she’s supposed to in a coma. Mind blowing blog. The Thoughtful Vegetable by Angela Ronson. Check it out. http://thoughtfulveg.blogspot.com/?m=1

Posted in traumatic brain injury | Leave a comment

#HAWMC #Health Focus;  “Challenges & Victories” by Janice Tindle 

The WEGOHEALTH Activist 30-Day Writing Challenge,Day 28

“5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small
victories) that keep you going.”

Challenges:🤔

🤔” The spirit of course, is eager, but the flesh is weak.”- Mark 14:38.

I can not physically do the things I want to do. That’s very frustrating. With dystonia, the more you move, the more your nerves twist your muscles. It’s like being “wrung out” continually. The pain is nonstop, and yet, we endure. 

🤔Being understood instead of judged. Stress makes any neurological disorder worse. If I spasm as a result of stress, it doesn’t mean that my condition is psychological. It means I’m having a neurologal response to stress. 

🤔Getting help and support in all areas of my life. If I had a personal assistant everyday, I could accomplish my goals. 

🤔Having both visible and invisible conditions, none of which is curable or easy to manage. It’s very hard to try to keep yourself as healthy as possible when your body is going in the opposite direction. It’s a battle. I’m very high maintenance. 

🤔Being depressed or having anxiety about having chronic pain is a symptom and not the same as having an actual mental illness. Why is this so hard to understand? 

Victories: 😊

😊I’m still here, fighting. I’m currently using neuroplasticity to manage my health and it’s working. Ups and downs, ebbs and flows, but always moving forward. 

😊Becoming an internationally published writer. Writing has been such a stabilizing factor for me. It’s builds self esteem and confidence. 

😊Having people tell me that through my words and example that I’ve helped them accept their disability, moved them, changed their opinion, thinking or response towards the disabled, inspired them, and that they were able share my words with others to help them understand what they are going through. Having people tell me, “you write want I feel.” 

😊I helped get a disabled parking space in front of my doctors office by contacting the city each time I got there and a non disabled person was parked in the spot. I sent them pictures of me and the car in the space.  

😊Reported two spam websites who stole my article and made themselves the author of , ” 7 Ways To Support A Loved One With A Traumatic Brain Injury” for copyright infringement and violations, to remove it. They were later closed down. 

😊Having the courage and self love to walk away from toxic people and unhealthy situations ( like leaving Facebook at the end of the year.) Although a lot of the above victories happened because of Facebook, a lot more challenging circumstances happened that created problems for me. I believe that my health focus is stronger without Facebook being a daily focus in my life.

(I bought this painting recently. I intend to use it to help me with my visualization therapy. ) 

Posted in cargiving, coping skills, disability, Dystonia, Dystonia awareness, honesty, human interest, humanity, inspirational, Inspiring, life changing, life changing events, motivational, people, rare disorder, self, thought provoking, tindle, traumatic brain injury | Tagged , , , | 2 Comments

#HAWMC #Sunday Selfie #Marriage #Caregiver

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 27 

“Sunday Selfie: Post your favorite picture of yourself. Don’t be shy, it’s time to shine!”

This is easy. My wedding day. Not a selfie. 

It’s my favorite picture of myself because I was young, healthy, vibrant and strong. Most of all, I was happy and content. This picture was taken on my wedding day. 1980. The world was my oyster. No physical boundaries, full of joy, hope and endless aspirations. On this day, there was no thought of sickness, heartache or trouble. No thought of loss, aging or untenable situations or impossible circumstances. The future was bright. We had freedom and exuberance. However, the marriage vows are for ” better and worse.” When the worse happens, that’s when you find out just how strong the marriage bond is. The man next to me became my caregiver and took my mother in to live with us. “For better or worse, for richer for poorer, in sickness and in health, till death do us part.” Amen. ❤️

Just to give you some perspective. This was written after a night filled with horrible pain from dystonia. I worked physically hard all day yesterday. It was unavoidable. I woke up feeling exhausted , but, it is time for my mother’s shower. As I help her take a shower, tears of pain fall from my eyes to the floor. They are indistinguishable from the drops of water coming from her body as we towel it dry. In spite of terrible circumstances, you can still create beautiful art. The pain is temporary. The art and memories last forever. 😀

Posted in brain tumor, cargiving, duty, Dystonia, Dystonia awareness, family, honesty, human interest, humanity, inspirational, Inspiring, life changing, life changing events, marriage, motivational, people, religion, self, spiritual, thought provoking, tindle, traumatic brain injury | Tagged , , | 2 Comments