Hey guys, my name is Jesse and I am a CMT patient. I’m glad to be here and just wanted to start a discussion so that I can meet new people. Tell me how you are, how are things going in your lives?
Hi I'm Tami. Hanging in there, myself: just had my 4th surgery in 3.5 years. PT is grueling but worth the effort in the long run. Seeing a new PCP to get a referral for an endocrinologist.
Hubby has severe PTSD and has been a challenge as of late or l should say most of the time year round.
Dad had a massive stroke and is in a rehab facility. Mom is holding it together best she can.
Brother just has 3rd colon surgery in 2 months. He is healing slowly l hope.
SIL is dealing with breast cancer.
So life has been up and down and up and down. Roller coaster is huge some days.
Trying to lean on God and let him worry about things. Trying to get healthier.
Good luck to everyone!
Hi Jesse, I am Gaynelle (AKA Braylin's Gramma) Things aren't too bad at the moment. I just take it one day at a time. It has been a mild winter here in Northern Minnesota compared to last year. It is still hard for me to be out and about because of slippery parking lots and sidewalks but I still have to try, I hope you are well.
So glad you did introduce yourself; I'm busy and have to take breaks often as I have a 2 yr old granddaughter I take care of while her Mommy works. At least my husband is retired to be here to help; believe me, it takes us both to keep up! LOL
I took a fall two days a go, as I do often. Very sore and tired from all the muscle tension of the fall. So, far I've not broken anything with the falls over the years except, big toes, several times. That affects balance though so it's not easy to get over even that slight of injury!
I'm looking forward Monday to my bi-monthly massage therapy. The muscles stay tense and need manual stimulation to allow them to finally release. It truly has been the best "medicine" for my progression of CMT. Too bad, medicare or other insurances do not recognize it as true medicine, and therapy.
Our winter so far hasn't been severe, but cold enough to make my bones ache more. Heat bothers me as well, so I adjust in summer to keep air moving around me and use cold paks. In winter, I've made, what I call rice buddies. Tube socks filled with long grain rice, and heat in microwave to use on lower back, around legs, neck where ever it feels comfy. Tube sock wrap around sore legs or lay on feet to keep toasty
I sing in public at weekly music jams as my wind down and socializing. Music lifts my spirits and rleeases happy endorphins to keep me more emotionally stable. As with any chronic illness, you have grieving for losses of function and down days just from fatigue sometimes.
Stay well, and I look forward to more shares of your experiences as we become friends!
Libby (aka CM)
Howdy :) I am doing ok. I am currently going through genetic testing to see if there is a link that can be detected. I have been referred for ankle braces and shoes. I find my mornings are better than afternoons. But each day is a good day. my husband and I are raising our two granddaughters, so every day is filled with hugs, laughter, and love. I have been coming to terms with some of the issues, such as walking a long distance, that seem to be off limits for me at this time. I keep working at it as I want my granddaughters to learn that it is not good to give up. They call my cane my "ninja stick", which sounds more positive. My parents were told I had CMT when I was quite young, but my father did not believe the disease was real so therefore it did not exist in my young years. Fast forward now to almost 48 years old and learning all that I can. I am currently looking at joining a study. My father was placed in a study for lung cancer, and the results of that study helped to expand survival rates by at least giving more time to live. I am a very positive person and I think keeping positive sure helps.
Hi, I'm Melody,
I have three daughters, ages 24, 14 and 5. No that's not a typo and yes I have lost my mind. They definitely keep me busy especially when you add a 2 yr old grandson.. After 15 yrs searching. I finally got diagnosed when I was pregnant five years ago by amniocentesis which showed me and my daughter have CMT. Lately it has been rough going but I have had a few good days lately. I am new here, and am so happy to have found a group that can truly relate and understand what I am going through. Glad you joined Jesse, and I look forward to learning about you!