Charcot Marie Tooth

One of my Guinea Pigs, Archie died somewhere between 11.20am and 2pm today

He had contracted a URI (Upper respiratory infection) and it was developing into early stages of pneumonia.

I am devastated, he went downhill so quickly! I take note of how all my pigs are every day and up to about 5 days ago he was fine, breathing ok and not looking worse for wear at all. He's been on baytril (antibiotics) since thursday and was eating as normal up to yesterday evening.

I am so sad that I wasn't there for him, when I came to check on him again and found him in forever sleep, he looked like he had been in alot of pain.

He was 3 and a half years old and we had him for about 8 months. He came from a rescue in Gretna Green and we rescued him and a young sow who we named Belle.

Now I am worried about the other three piggies. These infections are highly contagious. I have put his cage mate on antibiotics for now and am watching the other 2 very closely.

I am going to buy a special pot and shrub type plant for Archie to be buried in.  I want a plant that is there in some form all year round (eg- shrub) and preferably want one with lots of white flowers, like a blossom type effect. I'll have to see what the garden centre suggest.

Here is my boy...

and not a great quality photo, but showed what a devoted little Mummies boy he was (curled up on my shoulder)

On the 9th September (2009) I posted to my blog about getting a Soft Strapping Brace for my foot and ankle and wrist support... I had forgotten to post a photo so am doing that now.

Below is one each of the wrist support (left) and ankle strapping (right)...

Below is the wrist support and ankle strapping on...

I have at last got my Neurology appointment through.

It is on 16 December at Airedale Hospital. I have never heard of the consultant Dr Marek Kunc so don't know whether he will be any good with CMT but we shall have to wait and see.

Ideas for what questions to ask are welcome.... and how would I ask to be able to see him regularly (yearly or whatever)

Well of course, as expected, when I got the AFO back after going to get an insole fitted, the insole has made no difference what-so-ever. It is not even a solid insole, just one of those thin grey foam ones glued in. If I knew that was all they were going to do, I’d have told them I’d already tried that!

Following yet another appointment, the AFO was sent away again... this time to have the front softened and extended slightly.  I thought this would work but it came back having been chissled at with a rought edge and sharp bits.

I have had to ring for another appointment again and I have finally got my orthotist to agree to re-casting my foot/leg for a completely new AFO to replace the hacked rubbish one.

I have a 40 minute appointment booked for 16 December so if my other AFO is anything to go by, which was made from scratch by Tanya, then I should have a fab new AFO with just one just of adjustments.

Rather embarrassingly though, I am now well known by name at Airedale hospital as I rang up giving my name to book the appointment and they said, “Oh you see Tanya at Skipton don’t you”

So hopefully, just a little more patience will pay off.

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 ***

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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 ...

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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?

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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.

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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.