Re: Dartmouth-Hitchcock in Lebanon

[Guest guest]

Hi Ed -

Nice to hear from someone here in the Granite State....

I'm comfortable with my neurologist; I've only met with her once so far, but she

hit the nail on the head. She's here in Concord.

Do you think it's worth going up to Dartmouth-Hitchcock in Lebanon? My thoughts

are that possibly someone up there is doing research and might request to do DNA

or gene testing, and maybe the expense would be lessened....

Any thoughts? Thanks -

[Guest guest]

Hello ,

If you mention my name to the neuro-doc she might remember me. I think I saw her

a couple of times.

Athena lists 25 CMT/hnpp definitive tests.

They're in Worcester, MA area. If you're comfortable and she has some

other CMT/HNPP patients, you might as well save the travelling.

Incidentally, the AFO people are right in the other building on the

second floor. Pincince at Capitol Orthotics (226-0106) has been doing my

AFOs for years now and I like him a lot. If you get into them, make sure they

put a laterally flat bottom on them. That helps a lot with balance.

I wouldn't go with a flex hinge. The lightest is a simple one

piece " rigid " . They trim the area just above the ankle to give some

flexing there and that is enough. Also, it is important to have both

sides carefully adjusted for height so that your hips don't tip laterally when

you walk. That leads to lower back problems.

I had New England Brace make a molded shoe for me once and they were OK except

they got the lateral angle way off and had to redo the shoe. I used molded shoes

for decades before I needed an AFO. They're very expensive now about $500 a

shoe. They don't prevent the slap, but they are super comfortable and help a lot

with balance particularly in pronation (lateral tipping.)

I've found NewBalance shoes from Zappos in Florida the best for wear with an

AFO. They look like " nurses " shoes and come with an insert that you can remove

to match the AFO height. I like the models with Velcro closure straps.

Incidentally, you can get shoe inserts molded from a cast of your foot which is

less cost than a complete molded shoe (about $125 if memory serves.) They are

almost as good as a shoe.

I get all of my doctoring done now in North Conway and

Portland/Scarborough. I do a regimen of stretching every day before

getting out of bed. That is very important for the hands, legs, and hips. In

years to come, if your feet are not taken care of, knee problems will occur.

I was 59 when diagnosed by a good neuro-doc in Hartford, CT. So

for the last 15 years I've been dealing with a known cause. My HNPP

problems started at age 12. The soft pads in your skeletal joints take a beating

from the uneven gait. I take a packet of Knox unflavored gelatin in my oatmeal

every morning ( same as more expensive glucocasomine and chondritin) which I

think is very helpful with maintaining good joint health. It makes nails and

hair grow well as a side effect.

If it should develop that you have HNPP, don't let anybody tell you it is less

severe than CMT - I'm living proof and the neuro-docs are just catching up to

that!

EdM from NH