only one in the family with CMT

[Guest guest]

Hi ,

I am the only one in my family as well. We suspect my paternal grandmother may

have had CMT but cannot know for sure as she passed away when I was 12, 3 yrs

before my diagnosis. She was able to wear heels (something I could never do) and

didn't really have problems walking, just high arches.

I didn't really have pain until I was 27 and then it was just the callouses on

the sides of my feet. Surgery corrected that. Then 2 years ago I started with a

lot of pain, still working on a remedy for that. I had weakness in my hands at

the time I was diagnosed and it has worsened over time.

The biggest problem with the feet and legs at the time was just floppy feet and

an inability to flex them upwards completely.

As for cold legs in the winter....hmmm. I wear white cotton athletic socks

always and have never been able to keep the cold from seeping into the legs and

feet. I love snowmobiling and will use foot warmers in my boots. At night when

my feet and legs are freezing, I have a pair of big slippers my mother

crotcheted. They look really funky but they warm my feet right up. They're

awesome.

Hope

[Guest guest]

Hi, Hope:

I am a new mutation in my family as well. Type 2, diagnosed at 8, now 55. When

you mentioned the crocheted booties, it brought back some memories. My Mother

bought me a pair of what they called then " TV booties " .

They were yellow and were really long and the insert on top of foot and up leg

was orange and they had a yellow lace and you tied a bow right under your knee.

They were for sitting around and keeping the feet and legs warm and they did. I

still have them. What I used them for later when it was necessary, I put them

over my shoes and walked on the ice to get to my car to go to work.

They acted like ice grippers because the yarn stuck on the ice and I didn't

slip. We don't have ice much in Texas so we really are prepared for it. Now, I

don't have to get out...yeah!

Hummmm, maybe we should market those in the future. I can't crotchet at all.

They say " grandmas look " is back today in Home Decor! Grandmas are never out, no

children, so I'll never be one but a great aunt!!

Donna B.

[Guest guest]

Hi Donna,

Too funny! I never thought of putting them on my shoes to get across the ice. I

live in New Hampshire where ice and snow become a way of lifa as early as

October and can last right through to April. I usually just fall on it! haha I

can't crotchet either though my mother trys to teach me atleast once per year

(can't hold the hook and yarn, hands are too numb and weak) but still I try!

I managed to crotchet a squarish object once. hehe I chose to not have children

and will have to stick with the Auntie business, not a bad gig, and they will

have to make do with whatever I can glue or tape together (I am queen of glue

and tape).

Hope

[Guest guest]

I also am the only one in my family with CMT. Lately there has been some

debate as to whether I actually even have CMT because I have reflexes and

normal calves. I know some of you also have the same and do indeed have CMT. I

am going on the 14th to see a neurologist so hopefully he will be more

knowledgeble.

On another note, as many of you know we recently took in 3 brothers hoping to

adopt them. I just learned today that a cousin has come forward and wants to

take them. They have been with us for 3 months so please pray for us. I don't

think the agency will move them, but it is still a worry.

Jen