Charcot Marie Tooth Sandals

Charcot Marie Tooth sandals are hard to find as most can't wear sandals.  I tried for years, flip flops, normal sandal, closed top sandals, etc... and nothing worked.  The problem was my foot is so curved that it would not sit properly in the sandal..  My heel would always be touching the ground since it was stuck off to the side of the sandal and not inside the sandal.


I finally decided to give a pair of Crocs a try instead of a sandal. I am beginning to think this might be the best purchase yet.  I finally found a pair of sandals that I can slip on and go.  No spending 5 minutes tying my shoes.  I always hated tying my shoes, still do at 42 years old.  LOL.

The pair I purchased is the CROCS rx silver cloud.  They are closed toe, they slip on even with my foot.  I can't always wear them for long walks and such.  Always wear my shoes for that, but for the beach, summer, going into the garage or out in the back yard they are a god sent.  Two years now I have been wearing them and have never regretted it.

Cheers

Matym

May you be stronger tomorrow then you are today!

Charcot Marie Tooth Disease - CMT Awareness Month 2011

Charcot Marie Tooth Disease - CMT Awareness Month Do you have Charcot Marie Tooth? September is awareness month for CMT, so I thought I would explain some of the symptoms I have in case you are trying to determine if you have CMT.

It is my belief that the most noticeable symptom is the high arches in the feet. All my life way before I even heard of CMT I had high arches. As the muscles weaken in the feet then begin to pull back. As the muscles pull back they create the arch in the foot. Once the arch is there you begin walking on 3 points of your foot instead of using the whole foot on the ground. I remember my first appointment with my neurologist, he took one look at my feet and said Charcot Marie Tooth. He proceeded to sit down and talk to me for 40 minutes. The DNS blood draw was done that day and 2 months later I confirmed Type 1A.

Cold feet would be the next biggest symptom. As I type my feet are freezing, I live southern Canada and as the weather of fall begins to come my feet get colder and colder. I think it is time to get the slippers. A large dog also works well, I remember as a kid that our Old English Sheep dog kept my feet warm all the time.

Charcot Marie Tooth is considered a peripheral neuropathy so your hands and feet are impacted the most. As the muscles weaken the hands and feet can become deformed and numbness and nerve pain can set in. My hands are not to bad but my feet have been deformed for years. my right foot is getting more and more curved each year. My orthotics help a lot and allow me to walk more without as much pain.

Tripping would be my next biggest symptom of Charcot Marie Tooth. As the disease progresses foot drop begins and causes me to trip. I end up catching my toes on, pretty much everything. Just the floor sometimes is enough. Growing up my friends use to say it only took a leaf to make me trip. I don't even have to be walking sometimes. I use to get the odd comment at work, "What are you drunk", I use to reply with "Yeah, 9 am I am drunk!!!" It use to drive me nuts but not anymore, I just let it slide now.


Cheers,

Matym


May you all be Stronger Tomorrow then you are Today...

Charcot Marie Tooth Disease - Setting Our Children up for Success

Charcot Marie Tooth Disease - Setting Our Children up for Success, lesson learned. We bought our house almost 7 years ago and when we did we were not looking for a pool. We were just looking for our usual stuff in our house. Many bedrooms, a couple of baths, garage, etc.... When we weren't finding what we wanted we added a pool in to our search just to make sure we did not exclude something based on that. Then of course we found the home we wanted in no time, included a pool and a pool table so it was 2 things I was not looking for. Aquatic exercise turns out to be one of the best forms of exercise for patients with Charcot Marie Tooth Disease.

Needless to say turned out to be one of the best decisions have made for my family. Now I just need to figure out how to keep it running all year. Maybe its time to find a new house with a pool but this time have the pool come with its own house. I watched my 8 almost 9 year old son this week do 2 things in the pool. The first was to be able to beat a friend in a race from one end to the other. This is a huge deal for him as normally "race/competition" types of games he does not win or do well at. The second was I watched him swim from one side of the pool to the other over, and over and over and over again, you get the point. This was a great work out for him, something he would not of normally done. I guess a 3rd was to run away from the dog in the pool for an extended period of time as well. He was tired when that was done. All in all he had a couple of good workouts this week in the pool while having a great time. I guess I was able to set my son up for success without even knowing it, one of the best kinds. Not sure if I even knew about Charcot Marie Tooth when we bought this place, if I had it had only been for a short period of time and knew nothing about it.

Cheers to summer to all,

Matym

"May you all be Stronger Tomorrow then you are Today..."

Walk for Muscular Dystrophy 2011 - Hamilton

Walk for Muscular Dystrophy Association Canada in Hamilton was a complete success again this year. We managed to hit our goal of raising 500 dollars as a family. This past year has been very important for my family as I have discovered that 2 of my children has CMT type 1a. MDA Canada supports CMT so it was important for us to get out and do our part.

The main goal I have for this site is to be able to help spread awareness. For a disease that is as common as MS, there sure is not much awareness out there. Its hard sometimes to even find a Dr that knows what CMT is.

May you all be stronger tomorrow then you are today.

Cheers,

Matym

Children and Charoct Marie Tooth

Children and Charcot Marie Tooth, is a very sensitive topic.  I would think it is sensitive to most parents with children with CMT.  With CMT Type 1a there is a 50% chance that you will pass on the gene to them.  It does not skip any generations, there is always just a 50/50 chance that they will get it.  The hardest part to deal with is knowing that you passed it onto your children.  There is a certain amount of guilt that will always be there, and you get reminded of that on a daily basis.  With 2 out of 3 of my children there is always something to remind me of CMT.  It does not have to be them either, it can just be me some days :-(.  You tend to forget about yourself when you are more concerned with the children.

CMT effects my children much differently.  My son seems to have more issues with his hands and his fine motor skills.  He does not seem to trip as much as my daughter and not as much pain either.  His energy level is low and his "get up and go" is lacking as well.  His motivation to play games and sports is there, it just seems hard for him many things with his hands and most sports require the use of you hands.

My daughter has more leg and foot pain then my son  When she was just a toddler she use to wake up with pain in her feet and legs.  I can remember many a night rubbing her legs when she was so young.  She trips more then my son and has a harder time running and playing or gym activities.  She also seems to have a sleeping issue as myself.  Getting to sleep is really hard most nights even if you are way over tired.  Her fine motor skills are excellent and her writing and printing are excellent as well.  We had a hard time with our son and printing.  He has come a long way with more road still to travel.

Well that is all for now, thought I would just drop a note about the differences between them.


Cheers,

Matym

Charcot Marie Tooth Shoes and Orthotics

Charcot Marie Tooth Shoes and Orthotics is a huge topic and covers a wide range of people.  For this entry today I am going to talk about using custom made orthotics and the types of shoes for them.

Custom made orthotics are a great way to help support not only your feet but it also seems to help with energy levels.  I think because the muscles are not working as hard when there is more support for the feet.  I have had my othotics for awhile now.  They helped my feet in a large way.  Less pain in my feet and I could do more without tripping and falling over so much. Shoes also play a key role in having orthotics.

I finally had to replace my shoes and get a fresh pair of New Balance.  I have been buying these all my life since before I was 10, way too long ago.  This year I had to do more research then usual as I had to find a pair that would accept my orthotics.  My pair are very large and thick. I needed a shoe with a deep toe box to accommodate the orthotic.  My Charcot Marie Tooth disease has made my foot deformed over the years to the point where my right foot is very crooked.  Check out the pic below, its from a pair of my Crocs, you can see the curve in the croc.  Kinda funny. :-)  Anyways I digress.

The bottom line is that New Balance has what they call an "sl-2 last" which has deeper toe box.  I bought a pair of 927's.  They have stability control for both twisting your foot both in and out.  The deeper toe box allows for lots of room in the shoe for my foot and orthotic.  Once I had this combination I had great improvement in my stability.  I hardly trip at all anymore and the constant swelling in my knee and foot has almost disappeared.

Now this is the best part and I only found this out a couple of weeks ago.  We all know how to lace up shoes, and by the time we get to the top of the shoe there is usually not enough lace left to utilize the last hole.  I went in a running shoe store looking for shoes for my CMT children.  I ended up talking to the expert about laces as my son needed a new pair for his NB shoes.  She showed me how to make a small loop at the top of the shoe and back fill with lace to utilize all the holes in the shoe.  This has made a difference as well.  I can feel my foot not twist out as much. This has also helped my heel in my right foot.  It use to go up and down a bit as I walked and my heel would rub against the back of the shoe.  This does not happen anymore either. Now I know this is not a great explanation.  Here is a series of 4 picture that I hope explains it.   I hope to do a video of this and upload to youtube but need more time.

Cheers all,

Matym

May you all be stronger tomorrow then you are today.

Charcot Marie Tooth - Support Group

Charcot Marie Tooth - Support Group;  I wanted to take a bit of time to post a personal review of a support group that I belong to.  If you do not belong to CMTUS then I suggest you do, and don't delay.  I have been a part of CMTUS for approx 7-8 years and have met many people there.  One of the things I struggled with was being able to talk to someone like myself.  40 years old with CMT progression that gets worse every year.

This group has people from over 30 Countries, with all various types of CMT.  I guess I am lucky in a way having  Type 1A as it is the most common.  I have laughed, cried, yelled, screamed, and everything else to this group of people and there always seems to be someone that understands what you are going though.  There are people joining all the time.  People with CMT, parents that do not have CMT but their child does, siblings, etc...  You name it and they are there.

So if you need to vent, have an event coming up or are just looking for more information about CMT that comes from the people that have it, then this is the place for you.  Here is the link to sign up to CMTUS.

Enjoy all, and god bless,

Matt

Finally Got the Results

Hi all, its been awhile since I have posted.  Between Christmas, putting my Mom in a nursing home, dealing with my son's broken arm, daughter's sprained knee, work, fighting with my brother, fighting with Dr's, its been a crazy couple of months.

Well the Dr. finally got me in to replace a canceled appointment.  So we get in the office, there are my 3 kids, my wife and I plus the Dr.  We sit down, he tells us the bad news, they both are positive for Type 1A.  I was not surprised by any means.  He goes over the stretches, with them.  Not helping them just showing them.  Then he gives me grief about my son being heavy and he needs to be motivated to help his CMT.  I talk about their broken arm and sprained leg.  He looks closer at my son, but still no help.  Then I get into my questions about them, about support for PT, OT, Orthotics, what could the school system offer, etc...  All I get back is, telling us to exercise and stretch the calf.  Not even the muscle behind your upper part of your leg (sorry forgot what it was called).  Nothing for the hands, nothing for exercises, except to do them.  My wife asks a few questions and they were basically not answered.

The next part is the fun part.  Now I know he was not going to like this but I brought it up anyways. I treated it all with "kid gloves" because I knew he was going to get upset. So I ask why I had to wait so long and how come I could not get a letter stating they had CMT.  He just flew off the handle, I am busy etc... and nothing I could do.  I explained that with my son in school is having issue and I wanted to know sooner beacuse he needs help I have to talk to the school.  Then I spilled into that fact he has no compassion for me or my family and neither did his admin.  He just got up and said again I am busy it is the way it is and walked out.  My wife started crying my kids were in disbelief and not sure what to do.  I followed him out and he ducked into another exam room quick so I could not follow him.  Scared little chicken he was.  Some Dr's think they are GOD and god for bid you challenge them.  He looked down on me from the beginning and it has never gotten better.  I was beside myself and I felt horrible for the kids as this was their introduction to CMT.  The worst part was he called CMT a nuisance disease, how a disease that can land people in a Wheelchair a nuisance disease does not make sense to me.  The guy just wanted me out of his office, again no compassion and no bedside manner.

Now for the good.  We got a referral for orthotics for the kids.  Dr Grad is just a wonderful women and I say women on purpose.  Not once did she ever make us feel like she was better then us, I think I even forgot she was a Dr at one point.  She was racing my son down the hall as she was watching him run, she had fun that day as did we.  Anyways, she got the kids fixed up and we get their orthotics next Friday.  I can't wait, I am hoping they will help my daughter's pain in her feet and legs.  Anyways, I cannot say enough about her and it was really good for the kids as they needed this after seeing the other person (notice I leave his name out, but if anyone is looking for a Dr, in the Golden Horse shoe and wants to avoid this guy I will be glad to let you know, just leave a comment).  That is it for today, 2011 is a new year and hopefully a new Dr. and I will be good to go.

Happy New Year,

Matym

Canada Frustration with Health Care

Good morning all, well its been some time since I have posted.  I have not really been in the mood since I have been fighting with the hospital to get the results of my kids DNA testing.  So here goes the story.

It all started in Jan of this year when I had my yearly with my Neuro(I will keep names out of this).  I asked him then should I get my kids tested.  I thought that 2 of my 3 kids had CMT due to various issues they deal with.  I got a YES from him but I need to get a referal from my family Dr.  I processed that with my family Dr and finally got an appointment about 4 months out.  OK long time, but thats Canada and dammit you have to live with it.  (my sleep apea clinic took about 9 month for an appointment so I guess 4 months is good. :-( )

I told him there was no way were the kids having and EMG.  I would rather not know then have them go through that crazy test.  What ever medical professional created this test had to be nuts.  On no planet does sticking a needle that large in your leg feel good if you have Nerve issues.  Anyways I digress, easy to do with EMG's.  :-)

I called into his admin once I got the appointments for the kids and asked why we had 2, 1 hour appointments.  1 hour for each.  She told me it was becasue they were going to do an EMG.  I just laughed and said not a chance.  She said that would be for the Dr to decide.  I said no, I am the parent and there was no way in hell they were doing an EMG and I did not care what the Dr said.  Of course she had to goto him etc... to confirm but hell NO WAY EMG's are EVIL.

So our appointments finally come, he does his exam.  He concurs with me and thinks they have it, so he orders the blood work for the DNA test.  Of course no EMG was done.  :-).  The results come in a couple of months later and they book an appointment for 3 months out from the date they get the results.  I call in and ask to have them sooner.  School is starting for the kids and I want to be able to talk to the school and be confident that I know they have the disease.  NO NO NO, never going to happen.  He only give's results in person.  I said I only want a yes or no, nothing more. I got no where.  So I have to live with not being able to help my kids for 3 months.

Then 3 weeks before my appointment they move it out a month for reasons beyond their control.  OMG I was pissed, I had just received my son's report card and one of the negative comment was due to CMT.  It was talking about him working on balance in Gym class.  I have just been beside myself, I have been up one side and down the other of the admin but I cannot talk to the Dr.  He refuses to call me and I don't believe for a minute that his admin is fighting for me very hard.  I need information that is in my kids file and it is being held hostage.  I can't believe they how I am being treated.  Then it gets even better.

She calls one day this week and offer's a 3pm appointment to me as a cancellation.  I told her I had to pick the kids up and school at 3:10 and could not make it but I could be down there by 3:50.   Now its my fault I can't get the results.  The next day I call her asking if she had spoken to the Dr yet and of course the answer was no.  Then she proceeds to tell me she had another appointment on the same day as the 3pm but she gave it someone else because she thought I said I could not make it that day.  I said nooooooooooooo, I could not make 3pm and that most other times that day would be fine.  OMG, again, just beside myself.

So here, I am with my son that needs improvement on his report and I cannot help him due to the medical community in Canada.  As far as I am concerned I should of had a letter in my mail box with the test results 3 months ago.  Just like it was when I receive my test results 8 years ago.

Thanks for listening,

MM

Charcot Marie Tooth Awareness Week

Well it is my Charcot Marie Tooth Awareness week is almost here.  I am very excited to try and do my part in raising awareness for this Disease.  I have contacted our local paper and I am hoping that they will run a story on the awareness week.  I am waiting for a reply now as it is sitting with their "City Desk".

I have changed my facebook profile picture to the CMT awareness logo.  It is available at http://www.charcot-marie-tooth.org/index.php.  Please do the same and help spread the word about CMT.  With awareness comes knowledge, with knowledge comes solutions, with solutions comes a cure.  Help support CMT by raising awareness for the disease.

Thanks

MM

Charcot Marie Tooth and the Beach

Hello all, sad to see summer is gone.  All I want to do is go back to the beach. 

I have been going to the same beach/cottage for most of my life, usually every summer but some years are missed.  This year I had a really hard time of it, as there is a huge hill of sand between the cottage and the water.  I have been climbing the same hill for over 30 years and never really thought that much of it until this year.  I my knee kept giving out, twisted my ankle many times, and of course at night it was much worse.  The dark sends me off balance as it is.  Even with me new shoes I found it very difficult, and without it was even worse.  I hate wearing my shoes to the beach, did not seem right but it was the only way sometime I could make it.

Ever since I had both eldest children tested I have been keeping a close eye on them to see how they react to situations.  I was watching my son and he has a hard time with stair's now yet on the sand he seemed quite at home.  Until later in the day when he was tired, of course he could not keep up with the other kids and liked spending more time then others in the cottage.  I think he was not letting on how much it bothered him, as he was really tired a few nights. Me too.  :-)  All in all though he dealt with the hill great and did not complain at all.  I think it is harder on the parent then the kids when it comes to stuff like this.  A simple thing like walking down the stairs is hard for him as he 2 steps most stairs.  I asked him to walk "normal" one night on the stairs and he had a really hard time, it only seems to be one of his legs but I am like that too.  CMT affects my right leg worse then my left.

Anyways, other then that I just want to go back to the beach.  Bring on Summer of 2011.

Cheers,

MM

Charcot Marie Tooth Shoe

Today I would like to talk about shoes for people with Charcot Marie Tooth and orthotics.  After I got my new orthotics I noticed that I started twisting my ankle more.  At first I did not understand but then figured out that the depth of my shoe was too shallow and I had no support on my ankle.  I have been looking for a new pair of shoes with a deeper box that would allow the orthotic to fit in and still support my ankle.  After many days of research and educating mysell. I found that New Balance has the best option.  Its also the only shoe I have worn for the last 30 years so that helped too.

In general New Balance has what they call "last".  A shoe "last" is the mould that was used to build the shoe.  The most common lasts' are sl-1 and sl-2.  Shoes with an SL-2 last have a deeper box and allow the othrotic to fit in.  I have purchased a pair of mw927 walking shoes.  I did this for a couple of reasons.  The last is deeper, to allow my ankle not to twist while still providing room for my othotic which is kinda thick.  Also it has support built in that will not allow my foot to roll outward (Lateral ) or inward (Medial).  New Balance also built this shoe to support the natural walking gait.  I find my foot "flows" better from heel to toe as I step.  All in all these are great shoes and would recommed these to anyone. Click the shoe below to get more details about the shoe.

Cheers,

MM

Charcot Marie Tooth Inspiration

Well this is a story worth writing about.  If you don't have CMT or understand it, it comes in many forms and types. There are people confined to wheel chairs and people that look like they do not have a disease and everywhere in between.

This post is about a person who is an inspiration to me.  She has CMT and by the sounds of it is much like myself regarding the progression of the disease. Donna from London just finished an Olympic length triathlon.  I walk 5km and feel like I am dead.  She did this plus a whole lot more.  Donna set a goal for herself and man did she complete it.  If I had enough words for this I would like to write book about her Journey, as you can imagine she just did not wake up one day and complete this.  There would have been much training involved in completing this activity.

The fact that she ran 10K, biked 40K and swam 1.5K all in the same day is just wonderful.  I feel better inside just knowing that someone with CMT could complete this.

Donna, you are a real inspiration to me and who knows maybe I might do one too.  Well maybe just bike 40K.  :-).  Congrats again.

For the complete story check out her blog.  Donna's Triathalon Journey

Cheers,

MM

Charcot Marie Tooth Progression

With the progression of my Charcot Marie Tooth has gotten worse as the years have gone on.  I tended to ignore it for the longest time but when I was falling asleep driving home from a long day at the office it was beginning to get hard to overlook.  It must have happened a few times in the same week before I really took notice.  I thought I was doing good all those years and I guess I have been very lucky. 

The burning pain in my feet and starting in my hands is getting worse year over year.  I also notice that I hunch over more then ever.  There are a couple of toes on my right foot that seem to burn all the time.  Sometimes lighter and sometimes stronger.  Its almost like someone is holding a lighter to the bottom of my toes.

As muscle wastes away everyday tasks are becoming harder and harder.  Heck just staying awake some days is tough.  Not sure how I would do it if I had to go into the office everyday.  I don't think I could hold a full time job if I had to commute to the office everyday and I already had a sit down office position.

Cheers,

MM

Walk for MDA in Canada

Well, I completed the 5k walk and raised 540 for MDA Canada.  We were all last or second last out of a large field of participants but I figured that.  The weather held off and the kids had a blast.  My daughter spent all weekend camping and then still managed to do the 5km, in her rubber boots, and I was very proud of her.  She stuck it out. 

There was good food and drinks after, followed by some prizes.  We ended up winning 2 gift cards for some restauraunts in town here, so we are looking forward to going out for dinner.  My new orthotics helpped out a bunch, I don't think I could have walked 5 km without them.  Although it still took a few days to recover.  The first I would not walk very far, it was better by the 3-4th day. 

That's about it for today.  Happy Father's day to all the Dad's out there.  May day be filled much love from your children.  Remember to play with them as much as possible, think I am going to start with a swim in the pool with the kids.  Followed by more swimming with the kids.  I doubt we will be able to get them out of the pool today.  Its the first day its opened since my pump broke while trying to set it up.  Then I had to do some plumping and get a new pump, so the water was a little green, OK, a lot green. Took3 days to get rid of the green.

Cheers,

Matym

MDA Walk in Canada

Well my walk is tomorrow at 11am in Hamilton.  I am 95 dollars short of my goal and I am hoping the rain will stay away tomorrow.  I never thought to find out how long the walk is so I have no idea what I am up against :-).  I will have to ice my ankle again before bed to make sure I am good in the morning.  Good night all, and here's to hoping tomorrow is a good weather day.


Cheers,

MM

Muscular Dystrophy Fund Raising - Walk for MDA in Hamilton, Ontario, Canada

Good morning all, well I am down to my final weeks to reach my goal for the Walk for Muscular Dystrophy in Hamilton on June 13th 2010.  I have reach 37% of my Goal so far so I am on a roll.  Please if you could find it to donate 5, 10 dollars I would really appreciate it.  I have already asked and they are channeling my funds to the Peripheral Nerve bucket of fund raising so I know its going to help our cause.  This is the first year I am participating in this event and I am planning to do it every year.  Please click the banner at the top of the web site to donate online.

If you live in Canada you will get a tax receipt for Income Tax.  I was very surprised this year at how much money I got back from the Government on my income taxes


Cheers,


MM
Separately we make a difference but together we can find a cure!

crocs rx silver cloud

I thought I would do another post on my Crocs rx silver clouds with summer coming up.  Living with Charcot Marie Tooth has not allowed me to ever wear a pair of decent sandals, flip flops or any other kind of summer shoe.  I even tried a pair of the knock off crocs and I could barely keep them on my feet let alone walk in them.

Last year I finally broke down and thought I would try a real pair or crocs after hearing recommendations from other's with CMT'ers.   I bought them from Shoebuy.com.  With free shipping and free return shipping in the USA you can't go wrong.  For me since I live in Canada I could not buy them here.  I checked store after store and could not find them.  I spent a long time looking and nothing.  At least with this place I was able to get shipping to Canada.  It cost around 15 bucks I believe but in the grand scheme of things it worked out great.

They are great and hardly wearing at all after I would guess about 6 months.  My wife's knock offs are destroyed while mine look almost brand new.  They are as comfortable today as they were when I first got them too.  Anyways I just thought with summer coming it would be good to discuss these again.

Cheers,

MM

Fellow Blogger For Charcot Marie Tooth | Fund Raising

This entire quote came from Tim Phillips web site and I love it.  Check out his site at http://www.cmtcreatesmusic.blogspot.com/ which is where the quote came from.  

Like myself Tim is trying to help find a cure for CMT.  Tim is raising money for CMTa which is a US based charity working on finding a cure for CMT.  I am from Canada and I am trying to help out MDA (Muscular Dystrophy Association Canada) with fund raising.  Either way you will be helping out a good cause and hopefully help find a cure for CMT. You can find my banner at the top to Sponsor me or here is a link to sponsor Tim http://www.timjohnphillips.com/

Quote: Courtesy of Tim Phillips

Another classic case for me is appearing drunk when I'm not. I like to go out to bars, clubs etc. and do what you do at those places. The problem is that moving around the crowded room, I'm always the guy that stumbles, trips and spills drinks due to my lack of balance and ankle strength. I have no problem with being drunk if I am, but it is annoying to appear to be something you're not. This has become less of an issue with the purchase of some new fancy AFO's (Ankle Foot Orthotics), but they too have limitations particularly when it comes to dancing, and I do like to dance.

Support Charcot Marie Tooth Research in Canada

As a Canadian and a person with Charcot Marie Tooth I have always wanted to help fund raise to help find a cure.  This year looks like the year I will start.  Here in Hamilton, Ontario there is a walk for Muscular Dystrophy Sunday June 13th 2010 at 11am.  The walk is held at Bayfront park in Hamilton. I set a personal goal of raising $500 dollars.  I hope to get much more but I had to come up with some number.  :-)


Here is my link to sponsor me with your online donation.


Thanks all for your support,

MM

Charcot Marie Tooth Research

Well here is the latest in CMT research.  It involves around NT3 Gene Therapy for CMT1A Benefits Mice.  Here is the link to the MDA where the entire article is.  This is about the most promissing thing I have seen with CMT next to Vitamin C.  The idea for this one is there inject NT3 directly into the muscle.  The study showed that after 20 weeks the ice were stronger and after 40 weeks even more stronger.  This is only with one injection too, not multiple. In this case the testing was completed on Type 1A.  I guess for once it is nice to have the most common form of the disease.  Anyway check out the article and when you are done come back and vote at the poll.  I am curious to see how many think that this might end up being a cure for CMT 1A and maybe other.

I wish I had more time to devote to fund raising so the researchers can have enough funds to find a cure.  Since I believe my 2 children have CMT I would love to find a cure and make their lives better.  Mine too of course, but I am more concerned about them then I am with myself.

That's it for today, have a great Saturday.


Cheers,

MM

Charcot Marie Tooth Children

Hello all, still waiting for my orthotics.  This week I hope.  Well it has been a long couple of weeks over here.  I have finally decided to tell my children about Charcot Marie Tooth.  They knew something was wrong with their Dad but not what.  My oldest is 10 now and I am about 99% sure she has it.  It has been eating me alive for a long time to decided whether or not to tell her.  She has many of the same symptoms that I have.  Feet pain, leg pain, trips on occasion and has really cold feet.  My wife is so wonderful and started doing stretch's with her and the boys every morning and then a bit of exercise. 

The worst thing for me is watching how tired she looks by 6-7pm every night.  She just looks so tired and bagged.  Then when she goes to bed, like most of us she either can't get to sleep or wakes up frequently during the night.  It seems like we wake up at a drop of a hat every night.  I can be sitting on the couch and falling asleep watching TV, then go to bed and take over a hour to fall asleep again. argggggggg :-(  So frustrating some days.  Oh well, that's our life.

On a positive note my starts playing hockey tomorrow.  Not Ice hockey of course, but ball hockey.  He is looking forward to it, I hope he sticks with it.  Baseball and soccer, have not done well with him in the past.  I have a feeling he has it too but is not as bad as his sister.  I have order a referral for them to my neurologist so hopefully we will find out in the next coming months if they have it.

Here is a video I found of Amy Desilva, a wonderful young lady who has CMT singing as a ball park.  What a great kid.  That's all for tonight.

Cheers,

MM

Charcot Marie Tooth Orthotics

Well I got fitted for a new pair of Orthotics this week.  It has been a long time since I have had any and my feet sure have paid the price for it.  I get them in a couple of weeks and I can't wait.  I think not having them make my feet tired and my body.  Ah hell; lets face it I am always tired, but that's another post.  I will have to buy new shoes too but I will leave that for another day as well.  I have been wearing my crocs around the house all day since I work at home most of the time.  They have made a huge different too!

I think once I get the new Orthotics I will wear them during the day and try and keep my new shoes for in doors.  When I talked to the guy that is making my orthotics we talked about the crocs and wearing something on my feet all day long.  He believes that that if I wear them all the time a lot of my pain will go away.  I am hoping it help me with being tired all the time.  I just can't ever seem to get enough sleep, and I think stressing my feet all the time is not good.  I will let you all know if it makes a difference once I get them.

That's it for today all, have a great weekend.  Make sure you get enough sleep.  :-)

Cheers,

MM

Charcot Marie Tooth Shoes

Even before I found out that I have Charcot Marie Tooth I was wearing good shoes.  I have been wearing New Balance shoes for the better part of 30 years and have never strayed from their brand.  Once I found out about my Charcot Marie Tooth, I then knew why I needed them all those years.  There are two main reasons for this.  The first is the width, they come in many width's. Although only certain models do, I always manage to find a pair in my size and width.  The second is durability, I had one pair that lasted almost 3 years, they were very beat up after that amount of time, but I wear them in summer, fall, winter and spring.  I hate winter boots, they never fit right and hurt my feet. 

We need very supportive shoes, and I would hope most of us have orthotics in our shoes and boots.  New Balance shoes again are excellent for orthotics.  They have a lot of room since you can buy them in widths.  The heel is very supportive as well.  One of the worst things when I don't have anything on my feet is twisting my heel and/or the ball of my foot. I find as I walk up and down stairs I twist it the most, or in the kitchen as I pivot a lot on my feet spinning around.

My latest pair of New Balance shoes is one of their hiking shoes.  These things are great and I will get another pair for sure.  They have more traction in a shoe then I have ever had before.  I have not slip this winter at all.  Usually I fall down at least once or twice in a winter season.  Not this year though, what a great thing.  They are light weight and durable like the other models I have had.  The only thing with these shoes is they are expensive, so I am always trying to find deals on them.  Although I have not purchased shoes from shoebuy I did buy my crocs there.  I think I will try my next pair from them as they do offer free shipping and return shipping too.  They always seem to have coupons.  Right now they are offering 10% off.  Use the link below to use the 10% off any purchase.

10% Off Any Purchase at Shoebuy.com plus Free Shipping. Enter  'SHOEBUY' to redeem at checkout.

That will do it for today all, have a great week-end.


Cheers,

MM

Charcot Marie Tooth Fatigue

Feeling tired is one of the many symptoms that people with Charcot Marie Tooth must deal with.  The fatigue can be really bad some days, where all you want to do is sleep all day.  The tired feeling is one thing I dislike the most about CMT.  I fatigue about 7-8 hours after the day starts and continue to be tired the rest of the day.  Strange though I can't get to sleep, seems so crazy some days.  The fatigue in Charcot Marie Tooth is due to having weaken muscle's and it's twice as much work for CMTer's to do the same thing as someone without CMT.

To help counter the effects of fatigue I take a couple of supplements. Vitamin C helps I think in more ways then one.  It helps create energy and its antioxidant characteristics help the body in general.  I also take Vitamin E as that helps with the absorption of the Vitamin E.  I hear magnesium helps as well but I just started taking it a couple of days ago, so I hope it does.  Other then that gets lots of sleep and make sure you exercise if you are overweight since that will help as well.  The more I exercise the more energy I have, I also seem fall asleep better.  I have begun riding the stationary bike again and strength exercises for my arms.  I get tested for strength every year when I see my neurologists and so far I have not been losing any strength so that is a great thing.  I am hoping next year when I go, I will see an increase in strength.  We will see I guess.

Cheers,

MM

Charcot Marie Tooth Type 1

Charcot Marie Tooth Type 1 is a genetic disease.  There are many subtypes of the disease that that are caused by different nerves.  It is often called a demylelinating peripheral neuropathy, which is said to have muscle weakness and muscle atrophy.  Sensory loss in the hands and feet occur first, hence the peripheral neuropathy. The progression of the disease is usually slow.

The foot characteristics for Charcot Marie Tooth usually with show a high arch with hammer toes.  This is not always the case, since the muscles get weaker the foot will sometimes drop.  In this case you end up with a flat foot.  Most people are diagnosed between the ages of 5 - 30 years.  The progression will differ from person to person and even within siblings.  There is a 50/50 chance that the parent will pass on the gene to the children, so it is not uncommon to have multiple siblings with the disease.  Even within the same siblings the disease progression with vary.  The symptoms vary as well.

Here is a break down of the tye differnt types within type 1

Type                           Percent of type 1 population         Gene Involved

1a                                               70 -  80%                                    PMP22

1b                                                5  - 10%                                       MPZ

1c                                                 1  -  2%                                      LITAF

1d                                                    2%                                           ERG2

1e                                                    5%                                  point mutation in PMP22

1f                                                     5%                                           NEFL 

Although type determination can be determined through EMG's, a DNA work up is the most reliable method to determine the type of CMT you have.

List of medications to avoid.

- seramin
- Velcade
- Vincristine
- Cordarone
- Dapsone
- Colchicin
- Videx
- anything with gold in it
- Arava
- Antabuse
- Dichloroacetate
- Misonidazole
- Nitrofurantoin
- Nitrous Oxide
- Mega Dose B6
- Stavudine
- paclitaxel
- docetaxel
- Zalcitabine


Cheers,

MM

Rare Disease Network DNA Sequencing

Reminder that Charcot Marie Tooth Disease on TV. PBS is running a special on TV for Rare Disease Diagnosis Through Technology. Part 2 airs this weekend Feb 19- 21st. I hope you can all catch it.

Here is a link for the Rare Disease Network with more information.

If you missed it I have the first 2 parts on this post.

Crocs Silver Cloud Canada Buy rx

I absolutely love my rx crocs Silver Cloud. This particular brand of crocs is very hard to find in Canada, actually impossible to buy anywhere. I could not find the crocs silver could RX to buy anywhere in Canada. Since I have a neuropathy similar to the neuropathy that diabetics get I wanted this brand of crocs really badly.

The silver in the shoes help to keep the wetness down, and they are closed toe so that is great since I don't want anyone to see my feet. ;-) These are so awesome for my feet. The pain is cut down so much and the burning has also been reduced. I have never been able to wear a slip on type shoe so I was glad when these finally showed up at my front door. I had to order them online and have them shipped to Canada. The only regret I have is not doing this sooner. I think I am going to get another pair, one for indoors and one for outdoors. I wear these in the house all day long now.

I have included the product line a the bottom of this blog. That will take to the same place I bought mine.

Cheers,

MM

Rare Disease Network DNA sequencing and Charcot Marie Tooth

Hello all I have added the link to the video's from the RARE Disease's network in case you were unable to see them on TV. The Dr. specializes in DNA sequencing and the Dr himself has CMT. Its great to see someone in the medical field with CMT, in a strange sort of way. He has dedicated most of his life to DNA sequencing, with a CMT twist I am sure;-) Enjoy all, I will post the third one once it is available.

PART 1


Part 2


Part 3 (waiting to be published)

Charcot Marie Tooth Disease Hand Strength

Hello all, I have a bit of good news I beleive at this point. For Christmas this year we got the kids (me included) Rock Band for the Wii. At first I was excited to play the drums since that is something I have always wanted to do. I did a few songs and found the base pedal was to hard with all the repetition. By the time I was done the 3rd song my leg was killing. As we all know with Charcot Marie Tooth Disease the hands and feet lose strength first.

I picked up the guitar one night and started playing a few songs. After the second song my hand was cramping up and my finger's were stuck in one position for a minute or so one night. The next few nights I played too and found that it was hard and painful. I could not do more then 2 songs in a row. After a couple weeks something remarkable happened. I could play longer and longer and better and better. I could not believe it, I began to get some strength back in my finger's! Truly amazing it was. For once in my Charcot Marie Tooth life, I was creating muscle instead of losing it in my finger's. It was like I was exercising without knowing it. It's been about 2-3 weeks now where I seem to get stronger every day. Totally Amazing. So bottom line is the Wii is awesome.

What ways do you increase strength in your finger's and hands?


Cheers,

MM

Symptoms of Charcot Marie Tooth Disease
Charcot Marie Tooth Disease Common Tests
Diabetic Crocs Great for Charcot Marie Tooth Disease Patients

Charcot Marie Tooth Disease EMG

I still do not know where my Charcot Marie Tooth Disease comes from. My mother was tested years ago and it came back negative for the DNA test. My father had already passed on so he could not be tested fr Charcot Marie Tooth Disease. My brother agreed to go and see my neurologist and get tested. His appointment was yesterday. Now I am not wishing this one anyone but a little piece of me wanted him to be positive so I know where this crazy disease comes from.

He came back and his EMG was normal and his sensation in his hands and feet were good too. He still has really cold hands and feet and his finger's get very white. The Dr. is still going to send him for DNA testing so we know for sure. The other side of my family has been tested and they do not have it. All my siblings are 1/2 brother and sister's and since my Dad has passed on already this is my last chance to find where this comes.

Happy Saturday.



Cheers,

MM

Charcot Marie Tooth Disease Cold Hands

Question
Is it common amongst Charcot Marie Tooth Disease patients to have cold hands/feet?

Opinion
One symptom I get for Charcot Marie Tooth is cold hands I believe. As well as cold feet, not sure which one is worse really. The cold hands make it hard for me to do my job some days as typing for long periods on time can be very painful sometimes. I think in Charcot Marie tooth patients that have cold hands also tend to freeze in one position more. It's kinda strange some days when your hands get tired, they will just freeze in some bizarre position anywhere from 3 - 60secs. Depends on the severity of the cramp. The cold feet is just more annoying then anything. I miss my Old English Sheep dogs we had growing up. They loved cold things and at the same time they made my feet warm.

Conclusion
Yet, to be determined. I will put a poll up on the site for a month and see what the response is. I will keep it simple, something like. Do you find that with Charcot Marie Tooth Disease patients cold feet and hands are common? True or False. That should do it I think. Don't forget to vote in the poll!

The last poll I did worked out very well. It was on the type of CMT you have. Type 1A was the most common. I guess that good since its the one I have. Not sure really some days.

Cheers,

MM
Type 1A

Charcot Marie Tooth Disease

What is Charcot Marie Tooth Disease. It is a family of Neurological Diseases that affect the Nerves. It is thought that 1 in 2500 people around the global have some form of Charcot Marie Tooth. I personally have Type 1A, the most common type. CMT patients have slow never connectivity. CMT Patients also have weaken muscles as a result of CMT. Since the body can't fire the muscles as well then begin to atophy. As the atrophy progress the patient loses muscle mass in the hands and feet first. A common sign of a patient with CMT has very high arches and hammer toes. This is a direct result of muscle wasting in the feet. When the muscles get weak the toes pull back and the foot pulls back causing the high arch and the hammer toes. My neurologist took one look at my feet the first time I saw him and he told me I have CMT.



Different Types of CMT


CMT Type 1 - Autosomal dominant This of CMT is the most common type of CMT. There are many different subtypes which will be explained in future articles. They all cause demyelination, which essentially slows the speed at which signals travel throughout the body.

CMT Type 2 - Autosomal dominant except for CMTB1.This type of CMT affects patients axon. Where in Type 1 they outside sheath of the Nerve is affect, in Tyep 2 its the center of the Nerve that is affected.

CMT Type 3 - Autosomal recessive Type 3 affects very few CMT patients

CMT Type 4 - Autosomal recessive Type 4 also know as Cowchock syndrome

CMT X-Linked - X-linked dominant CMTX ia thought to ro b a 32 Gene Mutation as well, but more research is needed.

There was a poll completed on this site and out of 39 respondents 26(66%) had Type1, 17%(7) Type 2, 12%(5) with XLinked, 2%(1) type 2 and 0% were type 4.

Symptoms of Charcot Marie Tooth Disease
Charcot Marie Tooth Disease Common Tests
Diabetic Crocs Great for Charcot Marie Tooth Disease Patients

Charcot Marie Tooth Disease on TV

Charcot Marie Tooth Disease on TV. Holy have not seen that before. PBS is running a special on TV for Rare Disease Diagnosis Through Technology. The first part the airs Jan 22- 24th weekend. This first part provides an introduction into DNA sequencing. It also focuses on how technologies like this help Diagnose people. I have had my DNA tested for this disease an it was confirmed type 1A. Can't wait to watch this special.

Part 2 Feb 19- 21st and part 3 is March 26-28. I hope you can all catch it. I missed the first one since it was not on in my area. PBS have many channels these days.

Here is a link for the Rare Disease Network with more information.

Rare Disease Network

Too watch the first 2 parts, click here.

Mickey Mouse Cartoons Trip to Disney 2009

I love Mickey Mouse Cartoons and now I got to see them live where all the magic happens. Mickey's PhilharMagic was a wonder and the best 3D experience of my life. You see Mickey Mouse Cartoons everywhere and the kides faces were always glued to the screens when they saw them. We were so glad when we were able to see the Mickey Fantasmic Display at MGM as well. We were colder then we would have liked but was worth it to see the display of the Fantasmic Display. Was a true wonder on water and you still got to see some Mickey mouse Cartoons as well.

Well we survived the trip to Orlando. Just barely though. Well, it is now 2 days after being home and I barely have the energy to write this, but I feel compelled to share.

The 5 night 6 day trip was absolutely one of the best trips I have ever been on. I have never seen so many smiles on my children faces before. It was so wonderful to see.

Day one was ok, we made it to Detroit in time to have dinner and have a swim in the pool. The hotel was awesome in Detroit and right beside the place where you long term park your vehicle for free. The hotel was 99$ for the night and included up to 8 nights for parking. The shuttle followed you in the parking lot to pick you up at your car. They dropped you off at your car too. It was really a great all around.

Now for the fun part. Once we got to Disney on Day 2 it was awesome. We went to Hollywood Studios first day and it was open till 11pm for Magic Hours. Its great when you stay on Disney Property. We did not get to the park till about 3:30pm and we still saw about 90% of the things we wanted too. That night my right ankle was like a softball. I iced my ankle every night when we got back to the room. Bye the third day I had to ice both ankle's. The left one is almost normal today, probably 2 more days for 100% recovery. The right one will be at least another 5 - 7 days I would think until its 100% recovered. Next time we do this trip as a family I will need to take a day off in between each day at the park as it was just to much strain on my ankle each day. It just compounded by the end and was brutally painful by the end. Like I said another week to recover, hopefully the burning pain will stop by then. :-)

Cheers,

MM

charcot marie tooth crocsrx silver cloud

Well I finally got my Crocs and I have been wearing them for the last couple of weeks. I have to say, it was a great purchase and they are all they are cracked up to be. For the first time ever I have been able to wear a slip on. Its a wonderful feeling know I can just throw these on to go out to the garden. The are big on the sole and allow for some play in the heel part of the foot. My right foot is crooked and would never fit in a other type of slip ons, as the heel would always fall out. Also my toes stick in the front part of the Croc great and they stick there very well. I found in the past any slip on type shoe would always rub on the top of the toes and cause problems. Not these. They are so comfortable. I did have a heard time finding them though. I could not find anyone in Canada of sells this particular model. I was able to find these here at this online store and have included all the models at the bottom of this blog. I bought the Silver Cloud RX model.


Cheers,

MM

charcot marie tooth livingwithcmt back up

Hello all sorry about that. The original forward I performed did not work. Now it is all back to normal and better the ever. My Crocs are in should get them tomorrow, can't wait to try them on. It should be good help keep my feet dry too.


Cheers,

MM

Diabetic CMT Crocs Rxcrocs Silver Cloud

Hello all. Been researching a lot on Crocs Rx. I seem to spend much time researching things. I like to make sure 100% I know what I am getting into. Well today I realized how much Diabetic Neuropathy is like Charcot Marie Tooth. Guess I should lose some more weight and get my blood sugar back under control. Will starting walking again, and get on that bike.

One issue with having CMT is buying slip on type shoes or sandals is a real nightmare. I have never been able to buy a pair of any kind of slip on shoes and sandals just don't have any support. Flips flops are awful, never get my crazy looking foot in that thing. Its not like I think crocs have much support either but since they conform to the shape of your foot they do offer some additional stability.

Today I realized that since Diabetic's and CMT'ers have so much in common I thought I should share the deal I found on Crocs. They are called RXCrocs and they have been built for Neuropathies. The also make Croc Socks for people with Neuropathies. I bet they would both look great together. :-) Anyways take a look below at the bottom of this page and it has all the available crocs. We have a 10% off coupon and they offer free delivery and free return delivery too.

That's it for tonight. Have a good one all.

Cheers,

MM

Diabetic / CMT Crocs Rx Rxcrocs Silver Cloud

Hello all. Been researching a lot on Crocs Rx. I seem to spend much time researching things. I like to make sure 100% I know what I am getting into. Well today I realized how much Diabetic Neuropathy is like Charcot Marie Tooth. Guess I should lose some more weight and get my blood sugar back under control. Will starting walking again, and get on that bike.

One issue with having CMT is buying slip on type shoes or sandals is a real nightmare. I have never been able to buy a pair of any kind of slip on shoes and sandals just don't have any support. Flips flops are awful, never get my crazy looking foot in that thing. Its not like I think crocs have much support either but since they conform to the shape of your foot they do offer some additional stability.

Today I realized that since Diabetic's and CMT'ers have so much in common I thought I should share the deal I found on Crocs. They are called RXCrocs and they have been built for Neuropathies. The also make Croc Socks for people with Neuropathies. I bet they would both look great together. :-) Anyways take a look below at the bottom of this page and it has all the available crocs. We have a 10% off coupon and they offer free delivery and free return delivery too.

That's it for tonight. Have a good one all.

Cheers,

MM

charcot marie tooth common tests

Athena has a DNA test for the most common type. Type 1A. I was tested in Canada so it was not Athena but it was the same DNA test. Another common test for the other types is to perform an EMG. Depending on the person though it can be very painful. It seems to me the worse the CMT is, the more pain there is.

To assist in detecting CMT an intramuscular EMG is performed. The procedure for this type of EMG is to insert a needle electrode through the skin into the muscle itself. The neurologist then observes the electrical activity during the insertion of the electrode. Valuable information is gathered while the needle is inserted about the state of the muscle and its innervating nerve.

The results are gathered in are various stages of the procedure and completed multiple times 15-20 during any one test. Since muscles at rest have certain properties the test begins with measuring the electrical sounds at rest. Then the patient contracts the muscle in a slow and steady pattern, and another measurement is taken. If there is any spontaneous contraction that might mean there is damaged muscle. (a common symptom of CMT patients is fasciculation's) Once one round is completed the needle is pulled a few millimeters and then all the measurements are done again.

Nerve conduction testing is also often done at the same time as an EMG in order to diagnose neurological diseases.

Vitamin C, mega Dose and Charcot Marie Tooth

Good morning all. I have been spending most of my morning researching Vitamin C and Charcot Marie Tooth. There are many studies going on for CMT around the globe in relation to Vitamin C. There was a mouse study done in France to determine the effects of Vitamin C and CMT. In the mouse model it was shown to lessen the effect on the mouse when given Mega Dose of Vitamin C.

Here is a great article on the study and its effects on CMT. There are current human studies to determine the impact on human's. CMT & Vit C

I have tried Mega doses of Vitamin C and have found it does help. To what degree and the correct does is still out for debate. I can't wait for these studies to be completed. At this point I believe it only helps CMT 1A. I have been researching prices for Vitamin C and have found this body building web site. Go figure, LOL. These are 1000MG's tablets and there are 250 in the bottle for about 15 bucks.

Just Plain Tired

Hello all, sorry this post will be a bit negative. I am just plain tired. Summer is such a busy time or year. I have taken 2 vacations in the last month, 2 weeks on a very long trip and 1 week camping at a park that has many amenities. I just feel like sleeping all day, all night, and then all day again.

This is the one of the tough parts of this disease. Always feel like you need to do more but when you run out of gas, that's it the tank is empty. Of course all the tiredness leads to pain. I woke up one night a couple of nights back and could not get my foot to go straight. It was all cramped up and would not release.

I do find that Vitamin C helps with being tired. I have been off that for awhile since my last acid reflux incident that landed me in Emergency. At least it was not my heart :-). I will have to start low does Vitamin C again and see if it helps at all. That's it for today. Time to go have a nap, LOL.

Cheers,

MM

Croc Socks

Wow, I was just looking at the croc's section again as I have not decided which pair to get. I saw they have croc socks now! They must be like Diabetic socks.

They have a back school special, 10 dollars off 50 dollar coupon and they still have free shipping and free return shipping if it is needed. Its a no lose deal. Use the B2S coupon code at the checkout to get your 10 off 50 deal. I am thinking I might have to get the socks, too. Still not sure, too many choices.

Last minute add, the Silver Cloud version have also gone down to 48.75, down 1.25 since before I went on vacation. Plus the coupon, gettin better all the time.

Happy Friday night all.

Back Home, well a few days ago

Good morning, just finished a shift at work. Well not really a shift but a fun morning nevertheless. Nice to be back home and out of the damp weather. Like swelling is not bad enough, add on the Atlantic Ocean and see how that goes. :-)

The weather was nicer in Newfoundland then here. This is way to hot and muggy, can barely breath out there its so muggy. I have been putting my feet up every night and it is helping. These early AM calls for work does not help either.

I was looking at my feet tonight and notice the hammer toes are getting worse. I guess I don't really look at my feet to much. We went for a hike at Cape Spear to see the Whales and the old Lighthouse. By the end of that day it was brutal, must have twisted my ankle a 1/2 dozen times for so. Makes for a tired day that's for sure.

Cheers,

MM

Tue Aug 11th

Well, we are in Newfoundland for our big family trip this year. We ended up on a small island off the north coast of Newfoundland called Change Islands. It is a very rocky terrain and a lot of rain an dampness.

My feet are very swollen and I think I have twisted my ankle about 200 times since I have was there. Its tough slugging over all the rocks and when they are wet it is brutal.

We are back in St John's now and glad to have Internet access again. Sorry for the delay in posting :-) We fly back to Toronto on Friday, its like a whole other world here. Its a really beautiful and if you are every looking for a quiet totally different vacation, this is the place to go. Traveling again tomorrow to another cousin's house, so I will sign off now and see you again in a couple of days.


Cheers,

MM

Thur Aug 5th

Well just took a long trip and my ankle is swollen like a softball. 2 airports, a 12 hour day. 3 hours of flying and I can't stay awake. Yawning here like nuts watching my wife pack and un pack again. Need to sleep now. I will keep it short tonight. Have a good night all.

Cheers,

MM

Charcot Marie Tooth - Julie Newmar

Famous people with CMT. I thought I would put a lighter tone out tonight and find out if anyone knows any celebs with CMT. The only one I could think of is Cat Women from Batman. Go figure someone with CMT gets famous for their legs. hahahahaha

Julie Newmar's long legs were once insured for $1 million, she is now forced to grasp on to people to avoid falling down as the illness impairs her ability to walk.

Crocs for CMT?

Well I know for a fact that I hate buying sandals or any slip on shoe. I have tried the knock off crocs and they were not good. Just hurt my feet and with Charcot Marie Tooth, I did not need any additional pain ;-) I have been trolling around the internet as usual and found the RXCrocs that were suppose to be good for Diabetics. Since their Neuropathies are close to ours I decided to check them out. I just bought a pair of the RX Silver Clouds, can't wait to try them. This place has free shipping, free return shipping if any problems, and I found a 10% off coupon. They are at the bottom of the blog check them out.

July 30th, 2009

Well its been a long day today. These long days at work are brutal. They get harder and harder as I get older. Oh well, I guess "normal" people get that too.

Hey I am excited today I added a You Tube portal on the bottom of the blog geared to CMT. I was surprised to find so many video's. Some good, some not so good. Nice to see where I was in the progression by seeing other people. I sure would like to meet someone with CMT. Maybe one day.

Anyways check out the new video's. I think you will like them.


Cheers,

MM

CMT

Hello all, in case you don't know me. My name is Matthew and I live in Canada. Best country to live in the world as far as I am concerned. My basement flooded today, between the total down pour of rain and the sewer getting full, it was a long day. good thing we had a pool and have a small pump to get water out. Punched a hole through the screen in the basement window and ran the long hose I use down the drive way. I am dog tired now.

I was searching around twitter today and found a few others with CMT. I had found one but only one. I would propose that we mark all our CMT posts with CMT1A, since of source it is the most common. Can't use CMT thanks to Country Music Television. LOL.

Have a good one folks. Please sign up and follow this blog I would love to have some action there.

Cheers,

MM

Sat July 25th,

Well hello again all. Its been another long week and as always really tired by Friday's. Well Saturday now. I have been searching for a quality inexpensive vitamin store where we could order our Vitamin C at a discounted price, but I am yet to find one. If anyone knows of one please reply to this post. :-)

Burnt myself again this week, delayed reaction of course. Burns must be one of the things I hate most about CMT.


Have a good Saturday folks and stay tuned for more CMT resources coming soon.

Pain Foot pain that is

Hello all, boy this disease sure has funny things with it. You never know if or when you are going to hurt. Today has been awful, all in the feet. Painful, painful day. Can barely stand some dayss it hurts so much. Have a good night all, hopefully I will feel like typing more tomorrow.

What are the symptoms of Charcot-Marie-Tooth-disease?

The neuropathy of CMT affects both the motor and sensory nerves. A typical feature includes weakness of the foot and lower leg muscles, which may result in foot drop and a high-stepped gait with frequent tripping or falls. Foot deformities, such as high arches and hammertoes (a condition in which the middle joint of a toe bends upwards) are also characteristic due to weakness of the small muscles in the feet. In addition, the lower legs may take on an "inverted champagne bottle" appearance due to the loss of muscle bulk. Later in the disease, weakness and muscle atrophy may occur in the hands, resulting in difficulty with fine motor skills. Although sensory nerves are also involved, patients rarely notice significant numbness or pain.

Onset of symptoms is most often in adolescence or early adulthood, however presentation may be delayed until mid-adulthood. The severity of symptoms is quite variable in different patients and some people may never realize they have the disorder. Progression of symptoms is very gradual. CMT is not fatal and people with most forms of CMT have a normal life expectancy. Make sure to check our medical alerts link to stay away from potentially harmful drugs.

What is Charcot Marie Tooth

Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States. The disease is named for the three physicians who first identified it in 1886 - Jean-Martin Charcot and Pierre Marie in Paris, France, and Howard Henry Tooth in Cambridge, England. CMT, also known as hereditary motor and sensory neuropathy (HMSN) or peroneal muscular atrophy, comprises a group of disorders that affect peripheral nerves. The peripheral nerves lie outside the brain and spinal cord and supply the muscles and sensory organs in the limbs. Disorders that affect the peripheral nerves are called peripheral neuropathies.

CMT Canada Poker Tourny

Charcot Marie Tooth Poker Night

Hello all. I was thinking the other day how a group of folks with the same Disease can get together and have fun online. For me since I love Poker, I thought this might be a good way. So to kick this off I thought I would get us all to play in the same Tourny @ Party Poker. It would be a free roll. To sweet'en the pot a little I thought I would off $20 payable to the highest person that post their user name here and I can verify they are Canadian. I will pay via paypal only or exchange in Party Poker. Look forward to seeing everyone at the table.

Tourny July 26th 3pm. I will update with the Toury # once it is posted.

Charcot Marie Tooth Poker Night

Please reply to this post with your party poker screen name Registration is only open for 1 hour before so make sure you remember I will keep posting here as well.

Statins Weight Loss Program

Since we can't take statins, I did some research and found this great program. Check it out.


Cheers,

MM

Sat July 18th, 2009

Hello all. I must say one thing I worry about is high cholesterol. Since we cannot take statins like most people we need to find alternatives to drugs. For some that might mean an alternate life style. Here I think is a great example of how this would work. I am thinking abnout trying it. It will be such a huge change from what I do today. I wonder if I could even begin with this. Seems to daunting of a task to begin with. Just starting might take forever. I don't know.

Have any of you tried it. Please leave your comments on the subject I would love to hear them.

www.heartattackproof.com

July16th

Good evening all, a little later then normal. Its been a busy week, getting tired by Friday. Tried to find a baby sitter and had no luck tonight. We were going to go to the pony's tomorrow and go out for dinner. Looks like we are going to take the family to Swiss Chalet instead. I love their chicken breast on the Kaiser Bun with the dipping sauce of course.

I have been thinking about getting a pair of Crocs, the discussion group I am a part of seems to love them for CMT and they have an Rx Version now. Good for Diabetics and us of course :-) Once I find a cheap spot on Internet with a good deal I will post a link. I am going to try them for sure. I hate buying sandles or anything for my feet really. I think that is the thing I dislike the most are our feet. They are such a pain sometimes. For real too some days!!! LOL. Well I think that should do it for tonight. Have a good one all and TGIF tomorrow. Wooooooooohoooooooo

July 15, 2009

Well, I would like to talk about kids today as I just got back from my daughter's baseball game. It is so hard as a parent with CMT to watch their child go through the same thing. It hurts big time to watch her as she tries to run. The other kids are always faster and better and god knows, I know what that feels like. Like its not bad enough I had to live through it all, I have to watch her struggle much of the time. Good thing she seems to takes everything well, and is good at laughing things off.

Anyways, time to get back to my Ice Cream and get these guys to bed in the next hour or so LOL.

Have a good night all.

Cheers,

MM

Arg.....

OK, so some day are good and some days are bad. Take yesterday for example, normal day in the neighbourhood right. Kids are happy my wife is happy. Then as usual pick up something that is hot and holy crap did that hurt 1.5-2 seconds later. I hate that when the signals don't get to your brain fast enough, end up burning myself good some days.

Did the same thing when I took a cup of coffee out of the Microwave, I was part way across the Kitchen when that one happened. What do you do but move faster, can't drop it. Had a curved burn on my hand from that one.

Have a good night all, see you tomorrow.

Cheers,

MM

Living with CMT

Hello all, as I get older my life with CMT seems to impact my daily life more and more. I started this blog so I can share my daily life trials and tribulations of CMT. I am honored to be able to attempt to share this diease with the world. Now I just have to see if I can do it. :-)

MM

New Domain

Hello again, added the new domain to the blog tonight. LivingWithCMT.com I love it and it had a great ring to it. Any ideas for the Blog let me know, especially links. Would be glad to add them.

Cheers,

MM

Up and running

Hello folks, looks like it how I want it. If you have any ideas for links please let me know. Glad to research and post. Please ask any questions regarding CMT and I will find the answer.


Cheers,

Vitamin C

Vitamin C looks promising to help CMT Type 1A symptoms. Can't wait until the trials are over.