Charcot Marie Tooth

I have a weeks holiday towards the end of October and I think a walking stick would be useful as Claire and I are hoping to make the most of the week with a few days trips (including a couple of theme parks). I think a stick would be especially useful as I don’t expect my AFOs to be wearable for a full day by then (grrrr!).

Well, I was wandering back to the car from the pub on last Saturday afternoon and popped in to an outdoorsy type shop and found the perfect stick for me!

This is the one I got below...

It can be bought from this website below although thats not where I got mine.

http://www.aidmobility.co.uk/acatalog/Blue-Candy-Cane-Adjustable-Derby-Cane.html

I think its great, I haven't had the courage nor the occasion to use it in public yet but it is real handy so far for propping myself up in the garden when doing a spot of light weeding in my raised bed ;) and has been good for helping my up and down the stairs.

I am still apprehensive about using a stick in public because of the usual stigma but I'll see how it goes. 

I am also considering crutches for occasional use, they would provide even more support than a stick and would look more normal on a person my age (27) but on the downside, they are more cumbersome and get in the way.

My Orthotic Clinic appointment today went really good with just one disappointment.

My shoes were ready, and I can get my AFOs in them easily which is fab! The heels on the shoes need lowering, but we knew this would be the case.

My right AFO was rubbing and pinching under my foot. I was hoping that she would make a new one from scratch as this right foot one (which was made by a different orthotist) has been nothing but hassle and the left one that Tanya my orthotist made from scratch has been really good.

She was reluctant to make from scratch again though.... obviously seeing pound signs and budgets in front of her eyes.... So she has suggested putting an insole inside for now. I have humoured her for now, but I know it is not going to work. I want to show that I am trying her suggestions though. ; )

In addition to the New shoes and the adjustments to my AFOs, I have been given a soft strapping brace for my ankles. These were given to me for in the evenings when at rest as my ankles and feet really hurt when my foot droops off the end of my leg! I am wearing them now at work actually (as my AFOs have had to go back again) and they are really quite good. ... They obviously don’t offer the same amount of support that AFOs do but just give my foot a bit of a boost and supports my ankles a little from rolling too.

I will add a photo of these later.

ALSO I have some of the usual wrist splints with the metal bar on the underside... These are for when I am doing stuff round the house really, as my wrists just droop if I try to pick up even empty pans and things.

I’ll add a photos of these later also  ; )

I discussed about the hand / finger cramps and clenched fists and mentioned the night splints you guys used and she said that I could use my normal braces she just gave me at night. I don’t think she quite understood what I was explaining though, the braces she gave me today would not work for the clenching as they offer no resistance against the fingers.

I didn’t pursue this as this is not a priority right now.

I must say, I really have to sing Tanya’s praises, she is so good... prepared to discuss things and doesn’t patronise.

Today she said I was a “walking advertisement for the department” (orthotics) .

OMG, that was a bit of a long post, sorry guys!

I don't take any meds apart from Naproxen and paracetamol/ibuprofen as needed.

The Naproxen is doing very little, if anything for the pain and I do get quite alot of pain.  The paracetamol/ibuprofen also does nothing for the aches and pain and it is getting worse.

It seems like such a daunting task trying to manage it. I wouldn't know where to start!  A pain clinic seems the obvious choice? Having never been to one before I'm not entirely sure what a pain clinic do to determine what your pain is and how to treat it?

I'd struggle to explain my pain too and I get so many differing aches and pains.  I've started to a body map, recording the location, type and severity of pain each day as no doubt they WILL want to know this information.

I'll keep you updated on what happens.

I am back at Orthotic Clinic at hospital on Wednesday, yet again. My appointment is to collect and be fitted for my new shoes and hopefully be fitted for the wrist splints providing my GPs referral has gome through.

I am also going to ask about my AFO Leg Splints again as they are still rubbing and pinching under my right foot... They have now cut the sole plate too short during the last round of adjustments so I don't know what the are going to do this time round...

I am going to suggest/ask that they make a new one for my right foot from scratch. I think a new one for my right foot made my Tanya, the orthotist I'm seeing now would be the best thing. Tanya has been able to make a left one perfectly with just one adjustment and she didn't make the right one, just ordered adjusment.

As always, I'll keep you updated.

I have been having a bit of a rubbish day in the last couple of days when it comes to tripping.

I am not in any more pain than usual but my feet feel like lead weights and are hanging off the end of my legs!

I have tripped and nearly gone flying four times at work yesterday before I changed my walking style to a slooooow shuffle. Today has been much the same.

Got loads to do at work but they will have to wait and go at my speed today. Either I shuffle around and still be in one piece for the next day or I rush around and end up with a serious sprain or worst a break.

I don’t know what is going on today, as I said I am not in any more pain that the usual aches and pains I get every day.

I am a little tired but again, no more than I usually am. I didn’t do much to cause the droopy foot over the weekend.

I often wonder how many CMTers out there wear an SOS Talisman or something similar.

I asked the question on the forum recently and got a few answers.

I am interested to know how many of you out there wear a health alert bracelet of some sort and WHAT YOU WRITE IN THEM?

You can let me know by commenting on this blog or by email to cmtcentral@hotmail.co.uk

*** SAM ***

--------------------------------------------------------------

http://www.charcotmarietooth.freeforums.org

I have just been offered an advanced course at work from an external company.

It is a brilliant opportunity. The course results in an approved qualification.

I would love to do the course but I am really worried cos it is inevitibily going to involve ALOT of writting, not neccesarily the exam (as the exam is computer based) but more the taking notes and I struggle alot with writing like that. 

I don't know what to do.   

I got my AFOs back this week after being adjusted again, they still need more adjusting though, the right sole plate still isn't right. And now I think they have cut too much off the right sole plate so are going to have to redo the right one from scratch... it stops way before the ball of my foot.

How annoying... I thought this time I had really cracked it!

I'm going to ring up for an appointment as soon as possible, bloomin hard work though as the Orthotic clinic only runs on a Wednesday!

Oh well, maybe I'll get there eventually.

I wanted to post an update on my mental state of mind since creating this website and the forum www.charcotmarietooth.freeforums.org .

I have found running this website and forum has helped so much in getting me to a "better place", of course I still have many low moments but being able to help others in the same position as me and in many cases being able to continue those friendships on the forum, being able to compare notes and engage in friendly day to day chat with like minded people mean I am able to honstly say that I feel better equiped to deal with day to day living and better equiped to be able to approach medical professionals and get what I need to live my life the best I can. So thanks you to all those who have helped me, whether through a small meaningful comment left for me or through the ongoing friendship I have found with many of you.

I don't want to completely remove the sections on the My CMT page as most of it still applies on those low days and I know many of you have been able to relate to this feeling. To those people, I want you know that there IS a way forward and there ARE many people who feel like you do. Finding them is the hard part, and I hope I can help with that.

Well I've had my GP appointment this afternoon and she's given me a fresh Naproxen prescription (I'd recently run out of the supply I had, but didn't realise my last one was in Feb 06!!! ).

She is also writing the referral for my wrist splints and the referral for the neurologist also.  So hopefully the referral for my wrist splints will come through in time for my other appointment which will be in around 3 or 4 weeks time when my shoes arrive.  She said I may have to wait a little while for the neurology referral but I am OK with that.  The purpose of my neurology referral is to set the ball rolling on a hopefully regular 1 to 3 yearly appointment with the neurologist to monitor my progress. 

I have been off work this week on holiday and have been doing a bit of decorating. my partner Claire has been doing most of it, and I mean most of it! I have not been able to do much at all, my knees have been giving way from under me and my hips have been agony after 15-20 minutes.

This made me think back to 3 years ago when we moved into this house. I used to spend several hours at the house every day painting, up and down ladders and sleeping on an airbed with just a wooden stool to sit on before going to work the next morning and coming back to the house to start the cycle all over again the next evening.

My CMT has progresses so much in 3 years, I'm hoping the rate of progression slows down soon. One thing I know for sure, if it carries on at this rate I am going to be completely wheelchair bound in another 3 years.

Well the orthotic appointment went good yesterday.

Tanya (Orthotist) was very helpful, she understood exactly what needed amending with the AFOs and has taken them away to do those... I should have then back within 10 days, I can collect them from the hospital without an appointment like last time.

I discussed the difficulties with shoes and she has measured me for a pair of hospital shoes. We'll see what they look like when they arrive, they looked perfectly OK in the catalogue though. These are supposed to arrive in about 4 weeks I think and she is sending me an appointment for the fitting when they get here.

I also asked about the Night Splints and Wrist Splints.

We discussed Night Splints and she thought some sort of strapping would be better for this which I have agreed with, she is ordering me some. Can't remember when she said those would be ready though, with my AFOs or my shoes.

As I suspected she said I'd need a fresh referral for the wrist splints but that is fine. She said if I got into my GPs quite quickly then my referral should be back in time for when I have my shoe fitting appointment and I could sort them out then.

I have an appointment with my GP for next Wednesday to arrange this referral. I am also going to speak to my GP about my pain meds and I may also ask for a referral to a neurologist.

I am due back to the Orthotic clinic tomorrow (Wed 29 July 09)  following getting my AFOs (leg braces) 4 weeks ago.  Hopefully they will get my AFOs adjusted.  I am certainly needing them at the moment. 

As well as my AFO adjustments I am going to discus some other things that have been on my mind for a while.

I am looking at requesting some Night Splints and Wrist Splints ...

- - - - - - - - - - - - - - - - - - - - - -

NIGHT SPLINTS......

Strangely I don't want these primarily for night time although on occasions I think they would be useful. My main reason for wanting them is for when I am sat in an evening reclining on my reclining sofa. MY feet droop and feel really heavy and they hurt when this happens.

They would be the "soft" splints, that hold your foot at 90 degrees, although I have also seen pairs to buy that the angle can be varied.

I think they would really ease alot of the pain I get in the evenings?

- - - - - - - - - - - - - - - - - - - - - -

WRIST SPLINTS......

I could do with some wrist splints. Although most of my pain and weakness is in my actual hand and fingers as opposed to my wrist, I notice the weakness more exremely in my wrists, especially when having to pick up heavy items such as kettles and pans.

My grip sucks also but I don't think much can be done about this?

Ideally I'd like the wrist splints so that that I could use them at my computer which I can't with the traditional, beige with metal bar.

- - - - - - - - - - - - - - - - - - - - - -

We shall see what my Orthotist says

I am going to go back to GP to review my pain killers as up to now I have been managing without really...

I have a prescription for Naproxen but haven't got any for months... recently though I've nearly used up all I had left because of the worsening pain so am going to discuss this with the doctors. To be honest, the pain can be dealt with (I Hope!!!) it is the realisation that things are progressing that bothers me the most.

Following on from my last blog entry, I'm going to try to explain another of the several new symptoms which have started happening more and more recently, pains in my hand and forearms.

This is mostly in my right hand/arm and the pain is present more often than not recently.

Most of the time this is dull aches in most of my hand extending up the top of my forearm. This on occasions turns to more severe aches in my forearm accompanied by sharp and tingling pain my my hand... usually in my little finger the most getting a little duller towards my index finger with quite a bit of pain and stiffness in my thumb.

I am getting quite a lot of pain recently and am generally noticing several new symptoms rearing their ugly head recently one of which is nagging, constant shin and foot pain in the metatarsal area.

A sure sign of a spurt of progression I think

I get mostly dull but turning sometimes sharp pains in my shins and also bad pain in my feet, like my bones are being crushed very slowly.

Nothing I take (Naproxen mainly) entirely shifts the pain either.

Well I collected my AFOs on 1st July and I wrote about the problems I?m having with finding shoes that they will fit in (in my previous blog entry on 4th July).

Since then, I have discovered that my AFOs fit in Crocs! Though not ideal obviously (as Crocs don't support my feet well enough and allow my ankles to turn too easily) they are a more than adequate temporary measure until my continuing search for shoes continues! Anything is better than nothing at the moment so at least I can wear them to find out if any adjustments need doing.

I have been wearing them in my Crocs for an every increasing time every day (started with half an hour) and wore them at work on Friday for 5 hours before I had to take them off after lunch time.

They do need some adjustments. They catch my left ankle and also rub and dig in under the ball of my right foot. Also, the ankle strap could do with attaching higher up and the wedge on the outside of the heel (put there so that my foot doesn't turn out) could do with being higher).

I am due back to the the orthotist at the end of the month but could do with setting the ball rolling for the adjustements sooner rather than later. I am reluctant though to risk seeing someone other than my usual orthotist as she is really really good. The guys I have seen previously have just not helped at all, despite going to see them 4 or 5 times for adjustments.

When I wore them on Friday, I also drove to work in them and although they take getting used to were surprisingly easy to drive in.

I can't wait to get them sorted properly. I envisage wearing them all day at work eventually. I do not feel as fatigued and even though I wore them for just half the day on Friday I still had some energy left when I got home, which I don't usually have. They really help with walking, I don?t feel like my knees are sagging and standing still is just totally different with them on! Usually when I stand still, my knees start to buckle very quickly and I start to sway, I can't stay with my feet in one place and usually end up stepping back and forth trying desparately to keep my balance! With my AFOs on I have been able to stand completely still, my knees don't feel as weak and I don?t sway..

So here they are! (with me in them!..)

OK, so my new AFOs arrived on Wednesday and they fit on my feet perfectly. They also fit in my shoes perfectly but I can?t get my damned feet and AFOs IN my shoes at the SAME time!

I got so frustrated I cried. 

The problem is that I can?t get my foot round the ?bend? (which is why I can?t wear wellies either!).  My foot just won't fit round the bend and my big toes and other toes get "stuck" on the insole of my shoe as my toes aren't mobile at all. 

I have tried putting my AFOs on my foot and then my shoe on and I?ve also tried putting my AFO in my shoe and putting my foot in.

I was so looking forward to getting them and I thought my existing shoes would be fine with them as the are Cosyfeet extra wide and extra deep ones that are supposed to be ideal for AFOs.

I even, whilst crying, and causing excruciating pain forced my foot round the bend to see if they were comfy once in but they are not, just too tight.

I don?t think it?s a problem with the AFOs cos they fit my feet perfectly (I know I won?t know if they are right until I?ve walked in them etc... ). I think it is a problem with my shoes no opening up enough towards the toe area.

I'm trying to find some more suitable shoes but I just don't know where to start (and I really don?t want to succumb to hospital made shoes again ).  I have been fighting for these AFOs for a year and a half now and I really need them.  They will make my life so much easier for me.

One of my dogs Lucy went missing this evening and I have never felt so useless in all my life.

I had to beg loan of a neighbours bike as mine has a flat tire (through not using it for a few years!). This was after stumbling about frantically for 20 minutes. I could barely cycle cos I was (and still am) shaking like a leaf and a lack the strength do be able to do anything much to help.

But we found her! (now for the most ridiculous part that I'm sure I'll laugh about tomorrow). She was in the house all the time... she can open doors and had managed to lock herself in the pantry.

I have been so worried, I cried and cried when I found her and my knees completely gave way resulting in me in a heap on the kitchen floor crying my eyes out and Lucy squirming all over pleased to see me.

I was frantic with worry and thought I was never going to see Lucy again. I couldn't bear the thought of it.

Emergencies such as these just go to show how much strength to keep going that a person can muster. I cycled for an hour and a half round and round, up and down hills, shouting her name, barely able to breathe!  This is all whilst having balance on a bike so rubbish that I had to give up risking cycling a few years back).

I don't know what it is that keeps people going in these circumstances but something was keeping me going way beyond my breaking point.

I went to the orthotists on Wednesday.

The woman I saw cast my leg a few weeks back and .fitted my AFO today.

She had it more or less spot on first time!   There are one or two very minor adjustments to do on the new left leg AFO and she kept my original right leg AFO too to do quite a bit of adjustments to.

I can't wait to get them back!  I'm really excited. I might finally be able to wear them now, they will help alot.