Hi people,
Anybody use any special tools to compensate for the neuropathy?
I carry a needle nosed pliers on my keychain, and in the glove compartment of my car, in order to use credit cards at the ATM.
Also a "neuropathy" button hooker---a wire loop on a plastic handle, purchased from WalMart online.
Also carbon fiber AFO's for foot drop, purchased on e-bay .
Also "neuropathy" fingernail clippers, with finger handles so I don't drop the clippers on the floor.
Hello to jimkline 1948 .....
The answer to your post is, most cetainly 'YES !
Here in the UK hundreds, or perhaps even thousands of Cmt sufferer's, have learned to adapt devices to assist them with their every 'day-to-day' living personal needs :
In particular, the dreaded Cmt "clawing-fingers-hands" which is part of this debilitating Neuromuscular "Wasting" disease is not usually discussed ? :
You should also be aware that your body's "LONG" peripheral nerves to your limbs/lower body extremities, (fingers/hands/feet/etc), are receiving 'very-weak' electrical wave signals, "going-to-and-from-the-brain":
Therefore as a result your fingers/hands will lose all your "Fine-Finger-Dexterity", and you will be unable to 'pick-up-coins', and operate key card devices, and also struggle to withdraw your debit card at a ATM cashpoint machine :
Ps, please find below a copy of my reply to a fellow sufferer's question,
-----------------------------------------------------------------------------------------------
>>>> Okay ! here we go ? How much 'spare' time do you have ???
> An enlarged, and 'ergonomic' PC keyboard: Helps stop me hitting "double-keys":
>Currently, also presently on my Ikea desk are my>>>>
>Computer keyboard / Shoe-Horn / Long-Nosed Pliers / Letter-Opener / >Extra-Thick-Ball-Point Pens / Button-Pullers (LARGE & small) / Small->Screwdriver / Heavy-Enlarged-Grip-Scissors / Medical-Grade-Nail-Snips >Leather-Wallet-With-"Pulling-Out"-Loop attached :
> Petrol-Pumps ? YES ! I have to use BOTH hands !
> Newspapers ? YES ! problems turning pages ! Due the total loss of my >"fine-finger-dexterity":
> Supermarket Bags ? YES ! (big-problems), so I now take my own >hesian bags + Bottle-Carriers:
> Velcro Fixings ? "A-God-Send", Overlap both faces, so that you can grip one to pull open:
> Watches ? Changed all my watch straps to "Expanding-Bracelets" type:
>Screwdrivers ? Purchased a "Small-Cordless-Screwdriver" :
>Laces ? Long gone, all footwear has now got "Velcro" straps:
> Zip's ? You overlooked them ? Hate them, as my fingers total loss of >sensations, simply cannot cope with them: I always use my "small->long-nosed-pliers", to assist me: I have also fitted "Zip-Pullers" to my >'zip-up' jackets etc :
>What about using "cash-points" / ATM's / I cannot pull out or >withdraw my card, as I have no 'brevis' muscle(s) between my thumb >and forefinder:
>My solution ? Remove card by placing R/H 1st forefinger below the >card, and your L/H 1st forefinger on top of the card
> Gentle pull ! Hey->Presto ! Cmt is beaten once more ! ! !
>Cmt's "clawing hands: Purchase a 'pistol-grip-handle' used for spray paint, also for use on hair spray cans / deodorant cans etc-etc :
Finally, I have mounted in my small room, on the wall is picture frame stating >>>>
> HOI ! "Pay attention Cmt, as I'll only tell you this once" ?
Cmt ! I now know now that I personally, simply cannot get rid of you ?
However, "you can just 'piss-off", because you "aint gonna beat me", or my family members ! ! !
Result ? one 'happy-chappy', enjoying life to the full, with my "off-springs", ie, son, and daughter, with my two beloved Grandson's aged 16, and 18, who have all most unfortunately, have all inherited Cmt Type 1A from me !
Once again we all have 'NO' mental, or "doom and gloom" attitudes, to this disease as our existing total lifespan, is so preciously short:
Accept what God has given you, and get on with it, 'adopt and create' within yourself, a most sincere >>>>
"POSITIVE-MANAGEMENT-MENTAL-APPROACH" to cope with this debilitating, and frustrating Cmt Disease, and it's many, and totally varying medical "side-effects” :
Each, and all of Cmt sufferer's have different symptom's, no two cases are the same :
Best of luck to you .....
John (Glasgow) .....
John I love your reply and positive attitude! I am a CMT sufferer as well trying to keep positive! I live in Greenock with wife and seven year old son. Not sure if he has inherit CMT as we haven't done any checks on him.
It would be great to meet you personally as you come across as a very inspirational person!
Josebastid@yahoo.com
Hi to Jimkline !
My pair of pliers kept in the car is for getting my pound back out of supermarket trolleys (which are themselves useful as walking aids).
I use a mole wrench to help me open those horrible "childproof" caps on bleach etc, that you are supposed to squeeze at the same time as turning.
I use my chin to help to press my nail clippers when tidying up my finger nails.
I always used to use a skewer to open hot water bottle caps, but these are now made from flimsy plastic instead of having a strong metal loop on top, so I just don't fasten them so tightly, and hope for the best. Any better ideas? (NB you can't cuddle an electric blanket, or put it on your freezing toes)
My hose pipe is kept extended with its on/off adjustable nozzle by the greenhouse so that I don't need to lift watering cans. Of course I have to be very careful not to trip over the hose.
The only solution I know for pulling the starter cord on my motor mower (another useful walking aid - and self-propelled, too) is to ask my neighbour, though of course that depends on the neighbour being at home on a dry day. At least once started, this is a garden job I can still just do.
Ideas needed please:
How to open those beastly little sachets of mayonnaise you get at cafeterias.
How to wrestle compression socks/stockings on to one of those metal frame devices for "easily" (!) putting them on. I am new to this, and it takes at least 10 minutes and gives me sore hands to put just one on to the frame.
Hi,
I don't use compression socks as such, but I do wear thick "walking" socks inside my boots when we go out walking. I also have serious problems trying to bend and reach my feet to put any kind of sock on but I have a brilliant device to help me...purchased on Amazon and called.
Sock Aid Easy On Easy Off
Sold by: Advanced S.A. International Ltd
It does require a certain amount of finger strength to mount the sock on the "putter-onner" admittedly, but I rest the device on the bed beside me to put the sock on it and you can take your time with it ...then the rest is - as they say - a doddle.
The "taker-offer" part is brilliant and makes removing socks easy, I also use it for picking up my clothes in the morning and transferring them onto the bed ready to put on.
Might not do it for you but it certainly worth investigating...it makes my life a great deal easier.
Thank you, Forester,
I have just looked at a wee Youtube video of someone using your Sock Aid. It certainly looks easy ! But I'd still have the huge battle to get it onto the gadget - I have pretty feeble fingers, and compression socks are very tight indeed, and fight back.
However while I was exploring Youtube's offerings I came across a bloke suggesting you use a pair of textured rubber gloves to help ease the stockings on to your legs, so I deduce that they may well help a bit to persuade them on to the frame. Tomorrow I shall seek out some gloves and start experimenting.....
Couldn't get hold of any textured rubber gloves but ordinary Marigolds seem to make the job of wrestling with compression socks marginally less impossible, and my hands get less sore, too.
daylong.co.uk/other/product...
I hope this link works but I bought these gloves recently with silicone nobbles on and I found them to be very useful in getting my socks on otherwise I have to rely on my other half to do it for me!
Hello to Etxalar (Greenock) .....
I was diagnosed Cmt Type 1a in 1998 by the Institute of Neurological Science in Glasgow's Southern General Hospital:
The Cmt diagnosis was confirmed by taking,
a) 6 No, phials of blood which were then sent off to a specialist laboratory: (Aberdeen University Lab): Results will take 6 weeks to reach a diagnosis:
Todays cost for this DNA sample is £8,000 (circa): So if ever your NHS Consultant Neurologist, appears to be reluctant, it may be due to each Health Board's financial position:
b) A Nerve Conduction Speed/Velocity Test followed (uncomfortable for a child) can show the actual speed that the 'electrical-wave-signals' are being transmitted at from the brain to the lower limbs, and the various 'muscle-groups', and including the body's extremities Hands-Fingers: Usually in Cmt the signals strength is reduced by 60%:
Therefore, over your own particular lifespan the lack of a strong" electrical 'wave' signal being received at the various Muscle--Group(s) will cause these muscles to "waste-away" (atrophy):
My own personal decision was to NOT get my 2No. children tested at such an early stage in their young lives:
However, many Cmt parents choose to adopt a "knowledge-is-power" approach to getting their child tested:
Why ? what good will it do them ? Absolutely none, so why hang a "I have Cmt" label on them:
You, and you alone will know when to get your son tested as in particular when he approaches his teenage (growth-spurt) years:
Over the last decade or so, the Pediatric Orthpaedic Surgeons have adopted a "wait, and see" approach, and will only operate as a last resort with bone surgery:
Instead they will try, Shoe Insoles - Soft Tissue Repositioning - Tendon Lengthening -Toe Straitening etc:
Today, 'toe-straitening' is now done as a "Day-Care" procedure :
Bone surgery is only considered as the last, and final option:
Why ?
Because nowaday's they have the medical knowledge to realize that, no matter what medical operation, or procedure is undertaken, in Cmt the various muscle group(s) will still continue to "Waste-Away" due to the continuing, and ongoing lack of a strong "electrical-wave-signal" being received at the body's lower limbs muscle groups:
Alway's remember that surgery is a 'trade-off' ? Yes, you may gain something, but equally you may also loose something ?
I will get off my "soapbox" now, and wish you, and your son, the very best of luck:
John (Glasgow)
Definately right about gain something , lose something. After every operation I am weaker. Takes ages to recover. The knees and ankle get better but takes a year to get my strength back to what it was before the op. I think it's mostly to do with anaesthetics but not really sure.
When I was diagnosed with CMT 10 years ago, i was told my son who was 7 at the time was not able to be tested until he was 12 and usually it skip's the first generation, so they say, and lucky enough when he was tested he was clear of CMT (thank god) i have learned to live CMT myself and have a lot of fall's indoor and outdoor, but i keep my chin up and make the most of thing's, as there is no cure, what else is there to do but be as happy as you can be.
I have a 3-foot long shoe-horn, so don't need to bend at waist so much. Shoes are slip-ons, no laces. Use a very sharp folding-blade pocket knife to open letters and puncture plastic containers. Am going to stop taking delivery of the newspaper, because feel unsteady walking onto the driveway and bending down to retrieve it. One time I fell on the driveway and had to crawl on hands and knees to the house so I could clutch onto something to lift myself to erect position. I have the thick pens, and handwriting greatly improved. All my stairs have grasping rails on both sides. Biggest problem seems to be putting on my socks in the A.M.
Hello to jimkline1948 .....
"Welcome to the Cmt UK Club" !
Keep on utilising any devices to assist you to
"Manage" and "Control" this most frustrating
of Neurological Disease's :
Tell Cmt "just you p**s off, as you will not defeat me ! ! !
Best of health to you .....
John (Glasgow) .....
Ps, There are devices available that you can purchase,
to help/assist you to pull on your socks ? ? ?
Have a look at our webshop - cmt.org.uk/shop for lots of little gadgets for daily living, from pill-punchers (to get tablets out of blister packs) to silicon handles to put on the back of your ipad/tablet to help you hold it!!
There are thousands of gadgets out there!
Karen
The finger clippers sound good.
The arthritis foundation has various aids for crippled hands.
Am I a carrier of CMT
Cmt? Awaiting to see neuroligist
CMT and Muscle Growth
Speech Problems with Type 1A CMT