An update on Me
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May 11, 2010 at 9:24 am
Hello friends.
I got in to see a new Dr at our Nebraska Med Center. The muscular dystrophy association helped me to get the appt.
To make a long story shorter…I had an exam and a very , very painful EMG.
I mean VERY painful. I dont know the results of the emg, I’m waiting for my copy to come in the mail. I do know the Dr says I have Charcot Marie Tooth.
My hands are getting worse by the day. Strangely, I can still type but, writing with a pen is becoming more and more difficult. They did a pinch grip test on me and I am at a 4. When you get to 3, it’s considered loss of ability or some crap. When I get to a 3, I will no longer be able to button a button or zip a zipper, I guess. I notice it. I know exactly what it’s doing to my hands and strength.Connor also got an appointment to see a pediatric neuro and after exam…his diagnosis for now, is peripheral neuropathy. We both need a blood test to confirm the type of CMT…but, there seems to be no doubt.
Connor is still very strong…his hands, and his legs. We got a script for him to get leg braces to wear at night which will help stretch his heel cords but wont prevent the disease process. We can do stretching at home..but, he needs an insert for his shoes to lift his arch or the stretching wont do any good for his legs, it will only stretch his foot. To me, he has seemed flat footed…but, he does have an arch. It’s just that when he stands up, it falls b/c of weakness. With an insert, they said it will help. We have a script for that, too.
There is no treatment for either of us. We will just go about our lives and adjust things as we go along. He will have night bracing until he no longer will wear them…and I will be fitted for a new AFO for both sides. I guess I have to wear them now…lose the vanity and show my child that it’s ok to be different.
Those of you that know me….you can probably imagine what I’ve gone thru. He had his appt last Thursday and I cried for two days straight and still out of nowhere, I break down. I cant concentrate. I’m scared beyond words.
I never really cared what happened to me…just dont let it happen to my boy.
Well, now it has and I’m just sick.I knew this a year ago…I KNEW when I asked my last Dr if it would be possible that I had CMT b/c I didnt respond to all that IVIG he continued to give me, and I KNEW b/c my son didnt walk or run properly. I outright ASKED the idiot if it could be possible that I didnt have cidp, but, rather CMT. And his answer was “absolutely not”.
Hello ? Jackass ! I guess I need someone to blame.
Connor’s Dr said he shouldnt get a whole lot worse during his course of school…at least thru high school. Tho she did say, it’s hard to know.
I dont beleive that…but, I’m praying for that. I’m praying he is gonna have a very slight case and never need an AFO to walk. I’m praying everything for him with my entire heart and soul and if it’s ok, I’m gonna ask you all to pray for him, too.
So, CMT it is. For me and my Connor. 🙁
wishing you all the best,
Stacey -
May 11, 2010 at 10:45 am
[I]I’m stunned.
I send you love.
And hope … don’t let hope for real help slip away.[/I] -
May 11, 2010 at 1:50 pm
Hi Stacey!
There seems to be hope for you and Connor.
When you feel up to it go to stemcellpioneers.com and then go to Neurological disease and then go to CharcotMarieTooth Disorders. and check out posts by jpfarm.
JP Farm had stem cell therapy for CMT starting in Oct. 2008. He says you can PM him for information because he’s with a private company, but the research is ICMS certified.
I hope once you find that site you will get more info and take it from there.
I’m sure others on this site are better researchers than I am and perhaps can guide you better.
I went to a search engine and plugged in stem cell therapy and charcot marie tooth. Maybe you will find something more. It’s out there.
Some sites I found were disappointing, but there is definitely a good future for you and Connor even if doctors aren’t aware of the pioneer stem cell therapy being done.
First you need the blood work and there is no rush to do anything. But getting involved with CMT research and getting all the informtion you can now should make you feel better.
You and Connor are in my prayers and I know you will find a way. Please let me know if you have any questions or if there is any way I can look something up for you. I will help all I can and I’m sure others on this site will offer their help as well. This is just the beginning and time is on your side. -
May 11, 2010 at 7:21 pm
Stacey,
My sympathies on your situation. I wanted to mention something…I had lunch last week with an old friend, who was giving me some pointers on neuropathies, and she said she was diagnosed with CMT over twenty years ago. They told her she’d be in a wheel chair by 60, and she’s 63 now and still walking! But, she said that she credits water aerobics with keeping her as healthy as possible. She swears by it, and says that when she doesn’t do it, she suffers horribly. She is also, btw, an ICU nurse and hospital administrator for over thirty years, so she has some “credentials”. Thought this would help you, but mostly your son. Anything you can do to help maintain strength will help him in the long run.
Hope it helps…
Elmo
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May 11, 2010 at 9:25 pm
Stacey,
I was hoping all along that it wasn’t, but I guess it was. I guess you are reading a lot and finding out a lot about CMT. CMT is actually a lot more common than CIDP. You should be able to find out more information and get some more accurate information.
CMT can be very rough, and it can also be not so bad. I remember people from the support group I was in when they thought I had CMT, and they were in different levels of ability and disability. It is painful at times and can be challenging to walk and get around.
Please be kind to yourself. Maybe Connor won’t get so bad, and there are tendon lengthening surgeries that can help lessen the impact of CMT as time goes on.
My heart goes with you. Your road has been tough. I hope as understanding about CMT gets better, you and your family can work your way through it together.
I am with you all the way. Take care
Dick S -
May 12, 2010 at 1:43 pm
Hi Stacey,
I just read your post and have been offline for some time due to family problems, bla, bla.
As Always you have my prayers and thoughts. Thinking about Connor and yourself and wishing you both nothing but the best.:) –tim–
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May 14, 2010 at 5:12 pm
Thanks guys.
I have to say that I havent been reading alot lately. I did at first and all I could do was cry. Right now, some of the info hurts me more than it helps. I know it’s gonna take time…I’m sure I’ll always have guilt.
I am in a situation that, basically, I am alone in. As you know, my husband got that staph infection from a knee scope that landed him 22 days inpatient and five surgeries followed by the picc line antibiotics. Well, he is still on crutches and still in pain. No more physical therapy benefits.
The next step for him is another surgery to wash out the scar tissue and double check for infection . If all goes well, within about a month, he’ll have a replacement. Yet, very high risk for another infection with that.
So…all that is going on with him and his limitations, I dont talk about the stuff about me and Connor to him. I feel like I cant b/c we went thru enough with his surgeries that there’s not alot of maybe coping left ? I dont know how to put it or even what it is exactly. I just dont talk alot about it with him or anyone else. Cant talk about it with family or friends…
I pretend to be ok when I’m so not…and it’s getting tougher to hide.
The only other person that knows in my family is my niece. The daugther of my sister that was diagnosed. My “good” sister doesnt even know…and for me, that is extremely unusual. I guess maybe I dont want to talk about it with family and when it comes to Connor, I CANT talk. I cry.
I cry in the shower, in the car, outside…and I know it will get better. I know there is hope and I know it could be worse. It breaks my heart to watch him run or even walk now. The unknown is so hard.
You all know I’ll be ok..that even tho I fall apart now and then, I am strong.
If I could get a stem cell cure for him, boy would I do it. I will research and I will become overly informed of all of it…Thanks to a CMT thing on facebook, I have a new friend in Reno that I talk to quite a bit…she has CMT as well as her children. I’ve called another lady but she is on vacation and I will hear from her soon, I know.
I havent joined any new discussion groups…not even sure if I will.
I am on facebook so if anyone wants to join me, please do. Just be sure to let me know you are from here.In the mean time, I’ll be watchin you guys…and always praying for you all. Never, ever give up !
Tim, so sorry about your Mom..you have my sympathy.
Stacey
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May 16, 2010 at 12:29 pm
Hi Stacey,
Just wanted to let you know I’m praying for you and my thoughts are
with you and your son. -
May 16, 2010 at 4:30 pm
But, only IF I was sitting down. Why? Balance is soo bad if you did it when we’re both standing? Big TILT for both of us…not desired.
Just go full-tilt out at this as you have so many other problems. Face it? Learn about it and then? Deal with it! It’s not fun? but essential.
You have been assaulted with bad prospects, they shake your life and your faith and even hope? Do not ever let the turkeys get you down! EVER! Learn about these problems and assault them with your mind, spirit and fortitude! And, I KNOW you’ve got lots of that! Even tho you feel low now? You need a knowledge re-charge and a good, supportive doc to get you thru this all!
This web site thread I came across today may or may not be apt? But it IS what we go thru as do others who have other med issues! We aren’t alone? We can learn and get better resources from it all: urlhttp://www.mayoclinic.com/health/resiliency/MY01296/?utm_source=Other&utm_medium=email&utm_campaign=HouseCall&pubDate=May 3, 2010url We aren’t alone in pain and frustration and the seeming lack of HOPE! There is HOPE out there? It HAS TO BE/MUST BE! So there!
Just keep faith in yourself and all you love that there are soon to be true ‘cures’?
An Old fortune cookie I’d kept until it self-destructed has helped me: Patience is the art of hoping. Think about it. It is true, and can help you endure today for tomorrow! Hugs heart and HOPE! – j -
May 17, 2010 at 7:23 am
Stacey,
I will pray for Connor and for you. I will also add you guys to our Church’s prayer list.
I hate that you are gong through so much. Sometimes it seems the promise that “God never gives us more than we can bear” is not true when we’re pushed to the limit. So I’m really glad to read your comment “You all know I’ll be ok..that even tho I fall apart now and then, I am strong.” And encouraging us to “Never give up!”
God please give Stacey an extra measure of your strength. Please protect Connor and Stacey from CMT and arrest the effects of the disease. Father I ask that you would heal them both. Please continue to heal Stacey’s husband from the staff infection and protect him from further infection. In Christ, Amen.
Stacey, please do keep in touch with the Foundation Forum. We’re here for you and want to know how you, Connor and your husband are doing.
Gary
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May 17, 2010 at 10:02 am
Stacey,
I am so sorry that your path has been set as it has and that it has been as winding and turbulent as it has been. Finally you have an answer that makes sense and strength that you have gained from all of this is now your best tool. I am always so glad when you share your fears and tears so openly because I know that that is how you get stronger. I am also so glad to know that you still regard this place as a safety and support. I am thinking of you and Connor and your husband and sending you healing thoughts and prayers.
Stay well.
Linda -
May 19, 2010 at 2:19 pm
Thank you all for your prayers and responses…
Truly and sincerely, I appreciate more than you know.
Stacey
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May 22, 2010 at 4:24 pm
I pray for the best for you. There is still a lot of life left for you all. Let your husband heal and then you guys can begin to deal with the hand dealt to you. Unfortunately you can’t make everything go away at once, but you can eat a big plate of mashed potatoes one bite at a time.
One card at a time, one bite at a time, one smile for each day.
Love your husband, love your son, love your life, live the best you can.
Some times that is all we can do.
Be happy. I think about you.
I still have your e-mail, I’ll send one, or look you up on facebook. I don’t facebook that often, but I’ll still say hello.
You are a good person. that counts for everything
Dick S
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May 23, 2010 at 12:09 am
Dick, thank you so much.
You have always been a huge help and inspiration to me. And, while we arent’ quite the same anymore, we still are in a slow progressive way.
DO keep in touch, and I’d be very happy if you catch me on facebook.I’m doing better than I was the last time I posted some details. The shock is over and we are still living full speed ahead. Connor is playing baseball again and seems to be doing better than ever. There is a boy on his team that walks on his tiptoes worse than Connor does and I so want to ask about it… I saw a man walk by with very skinny calves and ankles and he walked oddly as if he has CMT, too. I dont know if that was the boys’ dad or not. I’ll be watching for him again tho, and, knowing me…I’ll eventually talk to the parents of the boy. 😮
I’ll PM you my last name…I think you will need it to find me on facebook.
Thank you so much for your kindness…
One bite at a time,
Stacey -
May 23, 2010 at 10:54 pm
Stacey –
My dad recieved the CMT diagnosis years ago, and as a result the 3 of us girls went through those awful tests. Both my sisters were cleared I was considered “high borderline”, whatever that means. After about 15 years of increasing debilitation Daddy’s diagnosis was reversed to peripheral poly neuropathy. He died 4 years ago – his poor body just shut down at age 81. But he lived a good, full life and kept his mind through out. Have someone double check that CMT dx – I know you are begining to accept it, but a 2nd opinion doesn’t hurt. I have to wonder what they saw in my tests to make me borderline, and what the future holds for me. Scoliosis at age 12, surgery for that at age 18 and 20, then again last May and August (at age 58) then GBS at Christmas. I think I’ve had enough, thank you. Daddy passed the scoliosis to me and always felt bad – but I assured him I love life and was glad he and Mother had me. (back then no choice, but heck, I’m still glad) Don’t feel bad about passing along a genetic issue that you didn’t know about. Connor will have a full life as I have, and not wish for other choices on your part. My son has scoliosis, and elected to have a baby – a girl so he made the choice knowing about passing along “bad” genes.Stacey, it often feels we get dealt bad blows. Multiple times. But the strength of character picks us back up again and we go on. We cry in the shower where no one can hear, and we pray until our knees go numb. But we go on. My love to you, your son and your husband. Please don’t abandon this forum because of CMT not CIPD. Whatever the alphabet soup – we love you!
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May 24, 2010 at 12:05 am
I’ll ditto that. You must check in with us whenever you can. Please don’t leave us, because you have shared and helped everyone plus your honesty and openess have been heartwarming.
I am expecting nothing less than a wonderful life for both you and Connor. Connor should be so proud to have mother like you. -
May 24, 2010 at 1:33 pm
Yes please keep us posted on what is going on with you and your family. Don’t be a stranger.
Sue
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May 26, 2010 at 11:47 am
Kathy, Katy, Sue…everyone
I’ll always be lurking…:) You’ve all been my lifeline for too long and I cant leave ! I care about all of you and could never walk away not keeping up on what you all are going thru. CMT IS different…but, we all suffer and struggle just the same. I should probably join the MDA forum but havent yet…I consider you my virtual family and I will always be around somewhere.
I’m heading to Minnesota on Friday…the lil man and I are going to go to the Mall of America and then to one of the lakes. I know there is no way we’ll make it thru the whole mall..I dont really care about that anyway. Connor wants to go to the Lego Store…I’ll just check things out as we go.
Sad that my hubby wont be joining us tho. With his knee, he just cant travel in the car that long. His next surgery is going to be June 17th and with any luck, he’ll have a replacement mid July. They have to first clean it out and make sure there is no infection lingering.
If anyone is near the Mall, let me know ?
Blessings to all…and thank you, as always !
Stacey
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May 26, 2010 at 11:51 am
one more thing to Cathie..
I’ve learned and been told that scoliosis is hand in hand with CMT. Maybe b/c of your family history and the scoliosis, they assumed you had it ? A DNA blood test is the only “for sure” test to diagnose it 100 percent.
So far, Connor and I are fine…hoping we dont develop that, too…but, there is a chance I guess.
take care…I took what you wrote and posted it on my facebook…those words say alot….”it often feels we get dealt bad blows. Multiple times. But the strength of character picks us back up again and we go on. We cry in the shower where no one can hear, and we pray until our knees go numb. But we go on”
Amen, my friend. 🙂
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May 26, 2010 at 12:14 pm
I just want to welcome you to Minnesota, the land of 10,000 lakes (actually there are over 14,000!) My brother lives in Lakeville, MN very close to the Mall of America. I live about 200 miles north of there. If my daughter’s family weren’t coming up this weekend, I would have gone down to see his family & attempted to meet you in person. But seeing my 3 year old grandson & 3 month old granddaughter at my home for the first time is just too exciting. I hope you have a wonderful time, the forecast is great for this weekend, at least it is up here.
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June 2, 2010 at 10:53 am
We had a fantastic time !
I made it there in 6 hours and home in 7 b/c we stopped at an outlet mall near Albert Lea.
Our first day, we rented a three person wave runner and Connor sat in front of me. He is getting so tall that I had to have him keep his head slightly to the side so that I could see ! We went out on Lake Minnetonka for two straight hours …what beauty. We saw some massive homes and learned how the rich folks live. It was so fun. I got the waverunner up to 39mph and kept it about 25mph. Didnt want to go tooooo fast and have either of us fall off. I was upset that I couldnt reach my camera in the dry storage of the waverunner tho !
After that, we went to a beach area for a short while and decided it was time to go back to the hotel. That night, went to my brother in law’s girlfriends house and roasted marshmellows in the firepit in her beautifully landscaped backyard.
The next day we went to the Mall of America. HUGE. Went to the lego store…of course, Connor was in heaven. Met some family for lunch and then went on the rides and did more shopping. Spent 8 hours there and that was enough. We didnt see a whole lot of the stores b/c it’s so big, you just cant…but, i was ok with that. I was there so that Connor could have fun and it turned out, we both had lots of fun !
That night, we ate at our hotel and got in the hottub again.
Coming home was good…I just wish I could be on vacation all the time !
I was happy that I proved to myself that I could make that long drive and do all the things that we did.
Hope everyone had a safe holiday weekend.
well wishes !
Stacey -
June 2, 2010 at 12:22 pm
Stacey,
So glad to read about how well you did on your trip. (although I don’t understand the mall thing (must be a “girl thing”.) Roasted marshmallows are one of my favorites. We made s’mores on memorial day. But they were made in the oven not roasted on the fire 🙁 . I had a PE Thursday and it as pretty rough on me physically (or maybe it was mowing the lawn Friday in the heat AFTER a PE that put me down). Anyway no trip we stayed around the house and ate oven roasted s’mores.
But thanks so much for the encouraging happy report. We “weep with those who weep and rejoice with those who rejoice”. Thanks for letting us rejoice with you.
Gary
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June 3, 2010 at 1:30 am
Stacey –
I am so thrilled about your great news, and wonderful trip. We all need these uplifting times, and hearing your story made me smile. Wave runners sound so great – it was 105 today, going up to 107 this weekend. Ugh. Keep smiling – I am so pleased you did the drive and did well. 🙂 -
June 3, 2010 at 7:16 am
Hi Stacey,
How wonderful that you shared your vacation fun. I almost felt like I was there with you and Connor.
Give Connor a big hug and know that I am remembering you in thoughts and prayers. It was so nice to hear from you. -
June 3, 2010 at 11:56 am
[QUOTE=ConnorZmom]one more thing to Cathie..take care…I took what you wrote and posted it on my facebook…those words say alot….”it often feels we get dealt bad blows. Multiple times. But the strength of character picks us back up again and we go on. We cry in the shower where no one can hear, and we pray until our knees go numb. But we go on”Amen, my friend. :)[/QUOTE]
[I]And “amen” from me as well. Yes, I saw the quote on Facebook. It really hits home.
Rocky[/I]
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June 4, 2010 at 1:23 am
thank you for that quote, I needed to see it and read it now. I dont have you on facebook but thank you for posting it here.
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June 4, 2010 at 7:29 pm
Stacey and the rest of you who were touched by what I wrote – sometimes words just come from the heart, and they touch a nerve. Thank you all for your thoughts, it further humbles me.
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