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Community Voices

Everyone is different & the smart ones are the ones getting help. Maybe we aren’t the ones with the disabilities. We just talk about it & get help.

<p>Everyone is different & the smart ones are the ones getting help. Maybe we aren’t the ones with the disabilities. We just talk about it & get help.</p>
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Community Voices

How Music Therapy Helped My Stroke Recovery

I have always loved music. I loved to sing along with the radio. I’d sing in the shower. I was in the kids’ choir at church. I played the piano and flute for several years. I was in marching band in high school. So I was not unfamiliar with how to sing to tune or clap to the beat. Once I had a stroke, all that changed. After the ischemic brain stem stroke, I couldn’t talk or move. My communication was limited to blinking my eyes. After much hard work at subacute therapy, I wound up in a wheelchair at inpatient therapy at the hospital. I could say short sentences and walk short distances with a walker at this point. I was all too familiar with physical therapy, occupational therapy, and speech therapy. I was surprised to find myself in music therapy. Although music had been part of much of my life, that came to a crashing halt after my stroke. I could barely hum, let alone sing or play an instrument. So I was surprised to be sitting in a circle with other stroke/TBI survivors and holding a pair of maracas. Everyone in the group had some type of simple instrument to play, and when the leader played a guitar, everyone else played along with her, making “music.” Now, I wasn’t regularly a maraca-shaking kind of girl. I could barely shake the maracas let alone keep any type of rhythm. I honestly felt foolish and didn’t know how this was supposed to help my recovery. The next music therapy session was later in the week and I was made to go. I wasn’t there by choice. This time, the leader was having the survivors each choose a song and everyone sang along with the guitar player. I kind of mumbled, halfheartedly participating. Then, the leader brought me a big notebook of songs and asked me to pick one. A bunch were rap or hip hop — not my style. Then, I saw a familiar one I had always loved, “The River” by Garth Brooks, my favorite singer. As I listened to the familiar beginning strums of the song, I forgot where I was and sang my heart out. I had the song memorized, so I didn’t have to look at the words. I closed my eyes and I sang along to the tune I’d heard so many times before. I could actually sing better than I could talk at that moment! I cried tears of joy because for a few minutes, I felt “normal.” At speech therapy the next few days, I asked my therapist if I could sing some more Garth Brooks songs. She looked them up on YouTube and I sang loudly to “Friends in Low Places” and “The Thunder Rolls.”  I would listen and sing away to songs in my hospital room while I was by myself. Amazingly, I remembered words to songs and sang clearer than when I had a regular conversation. It helped me feel like me somewhat. I never thought singing would help me to speak again, but there you have it. Singing was a way for me to feel close to a regular person and encouraged me to try harder in other areas of my recovery. Now, I still sing in the car along to the radio, but my teenagers tell me to stop. Heaven forbid mom get her groove on.

Community Voices

Am I the only one

I sustained a TBI 25 years ago and am now in a situation where I am without any support system. Have no contact with anyone, am completely paralyzed by being on overload emotionally, mentally and cognitively and am in a very bad situation. Am I the only one totally alone? If I am, then what,? I only could do things with people I knew who monitored me and enabled even doing the most simple day to day things. #TBI #social -disorder #Depression #PTSD

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Community Voices
Community Voices
Community Voices

chatcat761 Cathy Carlile Turner

#chatcat76  I'm so excited...I found myself! Please don't reply to the text in the title as this is my home. I'm so sorry. I bet I'm the first one to make a mistake! The name of my closed group is Let's See the Patient. I'd love for you to join, as I'm getting all my writings together about my Chronic illnesses and I love to help make appointments go better. Soon, when I'm eligible, (I'm new, so I might not be "old" enough yet), I'd love to do "rooms". I'll get my story in asap. But I'm pausing for a flare to end!

Have a good ??? My husband forgot to tell me what day it is.


#TBI #Dystonia #CervicalDystonia #Neuropathy #Virus #EpsteinbarrVirus #LymeDisease #CpapMachine #Relationships #DoctorVisit

Community Voices

TBI - And your name?

Our community is a close knit one. Now, I just say "I will recognize you, but probably not your name. Or I will recognize your name, but not your face"? It's such an easy way to get people to laugh and joke about my "abilities" to forget. I'm not as embarrassed now. Somehow, being open about our issues that can be embarrassing, makes people more aware and understanding. Can any help out in how that has worked for you? Or does it? It might be personality, or the person itself, but how do you handle memory issues, (or other health issues) when someone you know comes to talk, and you are trying to remember who they are? Everyone is different and every situation is different, but is there something you have tried? #TBI #Relationships #MemoryLoss

Community Voices

You can see this group is about anything. I wish it wasn't! I didn't put Childbirth, as I don't think it applies! lol. But one thing is...you can't get well or better if your doctor doesn't understand. You know that! Don't be afraid to search for one who does! I AM NOT A DOCTOR, but I've been in the medical field 20 years before disability. I've never stopped. Advocacy because of my love. While I am weary and have shut down many sites, I love Mighty so here I am.

If you have questions, I beg you to be as specific as your comfort level allows. (regarding the relationships) There are ways to make your visits rewarding and helpful for getting better. I can attest to this. I've lived through things that are a bit shocking, but having the right doctors and mind set, is what saved my life. I am recovering from something now, so thanks for your patience.

Something we have known for a long time, but it's not spoken about. Again, I do not "bash", but I urge you to go with your gut. Harvard found (as if it was new) the 3rd leading cause of death. And many believe it is higher, as most are unreported. This is not to scare, but to inform you in all honesty, you must be involved in your care. Trust, transparency etc... is a must. I will do a video to show what is needed for doctor visits at another time. Please, it's your life, and make it worth getting better!

Community Voices

Doctors and Diagnoses


One thing I believe from 17 years’ experience on one side of the bedrails and 20 years on the other side of the bed rails, is one of the most important people in your life are your Professional Caregivers! It is our LIFE, and we must be in the hands of someone we trust or feel comfortable with… OR we are on a very bumpy road. We tend to be intimated by someone who might have a bit more education than us. IF that ever is an uneasy, overall feeling, then find another doctor and let this one go. I discovered patients aren’t aware they can fire their doctors. Who’s paying who? The first visit is like an interview. Sometimes, it is good to present the visit in this way. Depends on you, the situation, etc. Do they listen? Do they answer questions understandable? Do they include your caregiver – in my case – do they include education and information to and from my spouse? Do they seem to genuinely feel they can help and are they eager to help? If at any time this changes, consider the worth of the relationship.

Also be aware, you can be dismissed also. Some do not believe it is worthwhile treating patients who will not comply to any treatment or have a resolution to an issue they would like to try. Your attitude comes across also. This is a line between doing something you don't feel is best (that's not called non-compliance) and just not doing anything the professional is asking or suggesting. It's wasting time and money.

If I gave my story this soon, everyone would run to the hills. One thing I can say, if there isn’t a good “vibe”, RUN. I don’t care if it is the President of the world, heavens etc…who says they are the best. RUN. If they EVER insinuate that a psych is needed – RUN. A psych test is different when assessing TBI, etc. Therefore, if your condition calls for a psychologist to be a part of the overall plan right away, then fine. But don’t allow this to keep you from getting the treatment you need. If they are not sure what to do, (I have nothing against Psychologists. But they can be used in the wrong way and it was almost to my detriment.) Don’t be afraid to ask questions about their recommendations. It could be very valid. If they do not believe in alternative medicine (massage, acupuncture, etc…) RUN. Every modality has its place and research is a great tool. (Understanding how to research is necessary) Massage is a good tool for relaxation, with acupuncture. I’ve noticed in our area, more surgeons are requesting these modalities before surgery. Many use them, also.

These are subjects of discussion and please join if you want your visits be be profitable.#patients #Doctor visits #TBI #Dystonia #RSD #Relationships

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