What is your biggest challenge of CMT?

As I learn what I can about CMT, please tell me what you consider to be most challenging.

Wishing you well,

SK

My biggest challenge is the weakness in my lower legs, preventing me from walking far. I am also experiencing some weakness in my hands, so opening jars etc. is more difficult. I have OA in my left knee and right ankle, but I have braces that help those. I find walking with a cane makes things easier since the muscles in the ankles don't have to work so hard to keep balance.

I find the most important thing is pacing yourself. I am a caregiver for my husband who has dementia and our aging dog, so I do a lot of shopping, cooking, yard work, etc. I do fine as long as I can plan my day and take breaks when I need them. Mornings are the best time, so I try do all the necessary chores then, having enough time in the afternoons to get the rest that I need. I was diagnosed 6 years ago when I was 71. I went to the doctor because my toes were curling and I wanted to get them fixed. He sent me to a neurologist. I am happy that the CMT has not progressed too far. By the way, I never did have my toes fixed, instead I discovered a toe brace which works great. I buy it on line from "Foot Smart". (The curling toes are caused by muscle atrophy since the nerves are not sending the signals they need.

My did was in a wheelchair at age 71, so I feel lucky that I can still do a lot.

Good luck to you with your many challenges, P.J.

Hi Phoebe,

Thanks so much for your response, you are an amazing lady for your age, with all of the hats that you wear, especially that of a caregiver! Your husband is very fortunate you have your love and care!

Yes, I work a little and rest a lot too! There are actually times when I feel very well, and I tend to really tear into things to get them done, but then I'm down for days afterward, so I understand the need to 'pace'.

OA and CMT have to be a tough combination, one going after your joints, the other your muscles! I'm glad that the brace saved you from surgery, as that just doesn't always work out as planned! I have a GP that continuously tells me to have surgery for the SI joints to fuse them with medical 'super glue', and have the lumbar central canal stenosis repaired, BUT the Rheumatologist says 'not yet, as you have no guarantee it will make a difference for the better' and a Chiropractor that says he sees both sides! So, here I am in limbo land!

When I was first on the 'fix me'trip, I saw the Asst Professor of adult ortho spine surgeon at Hopkins, saw the Asst Prof of Neruosurgery at University of Maryland. They both told me that surgery would only ever make me worse! Then there is the osteopenia complication, wondering if my bones would even hold the surgical hardware IF that opinion would change.

So I guess we work with what we have, you know? I understand what you mean about feeling lucky that you're not in a wheel chair yet, even though I see that as a definate possibility in my future. It's when I go to the Rheumatologist and see a kid in a wheel chair, the kind you just never get out of, that I feel ashamed to even utter one complaint! Kids should never have to suffer more than a skinned knee!

I'm looking forward to getting to know you, Phoebe! I'm already a fan of yours!

Wishing you well,

SK

I am not sure you received the reply I wrote to you, so I will reply again.........

You are amazing with all your challenges. Thank you for all the time and effort you are spending on our behalf. Best of luck to you.

Phoebe

Thank you Phoebe!

It is my pleasure to be here, great fun getting to know everyone! We all have our challenges, mine is all genetic too, and though I can look back and see it at my heels at times, I think there are triggers that can set it in motion, even high gear! Of course I pretty much defined autoimmune in it's most basic form.

Weather is a BIG challenge to me, and not only did it get cold and pour rain, it sleeted and later even snowed, now not like it was supposed to in Minnesota! Guess that's why my Nan always told us never to plant anything before May 30! I miss being able to get down and dig in the dirt and grow things. My husband built me beautiful terraced flower beds in the front and unless one of the grand kids shows some interest in planting them, they'll be mulched over!

Hope you're having a good day,

SK

How sweet that you husband built terraced flower beds for you. I hope they do not have to be mulched over. On Mother's Day, my three daughters and whichever of the grandkids are around all come to our house an plant our flowers and get the yard looking good. This is followed by a brunch. It is a wonderful tradition and everyone seems to have fun working together.

Happy Easter to you. Enjoy the beautiful day.

Phoebe

My husband is a master with wood, he surely won my heart when he started building me beautiful book cases! Most women when asked what they want for Christmas will reply jewels, but I want a place to hold all of my beloved books, especially the collectors ones! REAL WOOD CASES, with real wood backs! Photos of the grand kids are on them as well!

When my Mom came to live with us, he built shelves to hold the large crocks, bowls and platters she brought along. We wanted him to build a china closet, but he asked me if I couldn't just find one already built! (I wanted wooden shelves, not glass). So I found a huge Mahogany one in an antique warehouse in upstate PA online, that he drove a couple hundred miles to get!

Yep, most days he's a keeper! LOL!

Thanks, I had a beautiful day, all the grand kids came! Now they are the very best present in the world!

Hope you had a wonderful day too! Thanks so much!