I don't want to be here

[KCAL]

It's true, I don't, I don't want to believe any of what is happening and if I could get 7000 2nd opinions, I would and probably will try to. My husband is 32 and was given a "in my heart, I feel you have MND" diagnosis by a neurologist that we have to travel 1200kms around to see as we live in a rural/remote area in Queensland, this is after being pushed from pillar to post and fighting to see people over a six month period, watching my husband being stuck with needles and hooked up to what seemed to be a power supply for an electric fence and MRI and finally walking out of the hospital with a script for Rilutek and no information on MND, no support links, or the possabilities of what it could be other than MND. Our local Doc has no idea of MND, he thought I was something old people get, which would explain what he was so blarzay about it and is of the opinion that what the neurologist says goes as they are the experts (we're changing doctors).

We have a 16 mth old little boy and a baby due in Feb, I also have 2 teenage children, and 400,000,000 questions I want answered today and every other disease that displays the same symtoms tested and retested for. I't's only been two weeks and I'm already driving our Doc up the wall, however for as long as my butt points to the ground I won't lose hope...... but I need help and suggestions, I'm a quick learner and have already mastered the art of crying in the shower, you just blame the shampoo for red eyes. My head hurts, my guts are twisted, I get mad, sad, panic, I want to hold my husband until his eyes pop out and breath in every last smell of him and not miss a second but deep down I feel something is amiss or something has been missed.......

I guess you guys could probably get really sick of me too, I'm like a pig dog, when I get my teeth into something I won't let go until I choose to, good sometimes, not so good at other times.....

[CindyM]

We won't get sick of you, KCAL. I promise. You have Wayyy too much on your plate right now for us to lose patience with you! Welcome to the fourm, but sorry for the reason you sought us out. GLad you decided to join us, though. We will help in any way we can. Cindy

[KCAL]

Thank you Cindy for your welcome. Today is a crappy day, things have just hit home for my husband, and being a strong independant man of the land it's devestating to watch the big man who has helped me up so many times and been a tower of strength, cry in a way I have only seen before when our baby had to be resussitated and I can't do a bloody thing!!! Except tell him I will not stop harrassing, tormenting or becoming a boil on every doctors butt in Australia and when they run out, I'll start overseas!!! He did say to me today that he appreciates every thing I am doing (which I don't belive is any more than any other wife would do) and if he gets angry at me for being so persistant to ignore him and continue to be a stick fast flea on the medical world.

I am still not convinced the Doc has it right, I know everyone probably says that, however an MRI showed 3 vertibre in his neck that have degenerated to the point of placing pressure on the spinal chord, this issue has never been addressed as a possability for his drop foot or weakness in his hand, even though the first neurologist was adimant that was the cause and there was no neurological disorder and suggested that surgery be performed, he then sent the report to the referring neurologist and the surgeon and that was the end of it. As I have said we have been pushed from pillar to post and I am not convinced. We have found a Doc who is willing to take us on and start retesting and reassessing and this time I will demand that every test in it's entirety be explained and discussed - WITH US!!

All I ask God for is that this be something that can be fixed, well that's not true, a healing miracle would be wonderful, for my husbands sake and our childrens sake.....

[CindyM]

There will probably be a lot of ups and downs over the next few weeks. We will try to help in any way we can. Hope things level out emotionally, soon. Cindy

[janf]

Hi KCALS. Frist let me say God Bless You and Your Family . Lean on him he is your father he will give you PEACE. I am an ALS pt have similiar neck problems but the neck does not cause foot drop because thats l- spine and the neck is c-spine. My ortho explained to me. The neck problems could cause hand weakness. I am so very sorry you are going through this my e-mail is franksjan@hotmail.com if you need me. I will help in any way i can . JAN FRANKS

[kelly]

Kcal,
I can relate to everything that you said in your message. I also have young children..so I know how scary this is. I also cry...several times a day. Know that you are not alone..if you ever need to chat..feel free to email me. Just take things day by day..sometimes hour by hour. Do you have a good support system? Take care...we are in this together.

[KCAL]

Kelly, Jan, Cindy - Thank you. I find it truely amazing that the "experts" cannot inform you about things, it takes others who have or have experienced the same thing to help you out, not really what I wanted to hear, but again thank you. Not too bad today, but then again it is only 4am here (the joys of an early work shift!!).

As for leaning on God, He has a permanent indentation on His shoulder from me!! Good thing He doesn't have email or His inbox would be chocka block - just from me.

All the best for today for all of you and I lift each and every one of you up in my prayers.... :)

[janf]

You too K-CAL hope we can help one day at a time moment by moment. CALL WHEN YOU NEED US JANF

[MtPockets]

OK, I know I'm weird! But today I just had to give out some hugs to some people who really needed them. (tears and all)
God Bless
Capt AL

[liz]

Right back at ya' Capt. Al. You have the knack for brightening my day. :-D

[KCAL]

Thanks AL, isn't it funny there are times when people go to give you a hug and it's like "DON"T TOUCH ME, I DON"T WANT YOUR SYMPATHY!!!" and other times, from the right people, it's perfect, I guess the meaning behind the hug is the important thing and that it's not all for show with a "there, there" patronising attitude.....

Well, a week after we started this journey (all 3 weeks ago!!) I made a pact to myself and that was I had to have at least one "win" per week.... what ever I classed a win to be at the time (even if it was only crying 2 times in the day!! lol) I thought I would share with you my "wins" so far, they may be insignificant and grasping, even maybe denial to some but each one means alot to me....

Firstly i was appalled that our neurologist had flamboyantly sent my husband on his way with little or no information on her heart felt MND dx and an "i'll see you in about 3 mths", it was then I contacted the MND Qld Assoc, who were more than helpful and contacted the neurologist bringing our next appointment forward by as much as we wanted - Win #1

Next, not happy with the fact that our Doc had no idea what MND was, I embarked on finding a Doc that had knowledge and was will to take us on, win #2 I found one, win #3 was that this doctor is intent on testing and retesting my husband.

With men off the land, when something can't be fixed you shoot it or just let it die. An attitude that I was terrified my husband would take and seemed that way with his expressions of frustration in my obsessive compulsive behaviour with doctors, phone calls and wanting to know how, why and what if's, especially after everything hit home. However after finding some information I had researched and printed out on MND and other diseases with the same symptoms, I found him reading it and softly said " can you now understand my obsession?" win #4, his understanding were I was coming from, we sat and talked about it all, win #5 (he hadn't mentioned the dx indepth up until then), win #6 came in the form of him asking me to help him understand what the doctors were saying and to be with him the whole time (as if I'd leave him by himself!).

Win #7 - I saw my husband smile and laugh for the first time in 3 weeks over the weekend and a positive approach being taken - this one I thank God for from the bottom of my heart.........

Seven "wins" in 3 weeks, pretty good I think. My personal "win" goal - To stay positive, no matter how much corrigation is on the road ahead..... and among the 50 billion other things I ask the Lord, I ask that that one be my strength.......

Have a great day all, and may you have a "win" today, no matter what it is or how seemingly insignificant it is to others and don't forget to thank God for it......:-D

[CindyM]

thanks for sharing htis, KCAL. My personal philsophy is that it takes less energy to be grateful and psoitive than it does to be all tied up in knots. Here's hoping the "wins" keep coming at you! Cindy

[KCAL]

I hope I'm not overstepping my mark posting so often, it's great to be able to talk without having to be face to face with someone. I guess I'm avoiding other peoples emotions until I can deal with my own first up.....

I learnt a valuable lesson last night, that being if you know very little about something, you shut your gob as the implications of uninformed, uneducated comments can have an irriversable impact on a person. Last night we were farewelling our neighbour at dinner, and my husband opened up to him about what was going on at the moment, I silently breathed a sigh of relief as I thought this would be a step forward for him, not to be so..... This bloke who is one of those ppl who know a little about a lot, turned around and replied, mate there's no way you want that (MND) you know how bad that is... (here it comes....) I know a bloke who had that and he was just a blob of jelly in a wheel chair, the only thing keeping him up was his spine.....

Do you have any idea how much restraint it took me from decking the guy right there and then!!! This is he point my world fell around me, my husband who had just gained a positive outlook, turned around to say, "as long as I can hold a gun, I won't end up like that...." Pls somebody tell me how I can rebuild my husbands positive outlook.

To be honest with you, I don'[t believe a word this guy says, you know the type, always knows someone who knows someone who has something...... I think if we'd said MS, MD, CIDP or anything else he would have said the same...... now the seed has been replanted.

I did say to my husband that this guy has no idea and that I was cross (not the word I wanted to use) that he made a stupid uninformed remark like that.... but I don't think it made a difference..... makes you want to go on a quest to educate the world.... even if it is only in sesitivity....

Have a great day everyone, I have a stumbling block to remove... God Bless......

[CindyM]

Maybe hubby is just momentarily depressed by that idiot. He sounds like too smart a guy to let some doomsayer color his thinking for very long.

[Icanmanz]

KCAL, Thank God I have never run into anyone that has said something degrading like that! Bless your heart, and your husband's. People can be so rude and stupid. With friends or neigbors like that who needs enemies. If I were you I would take a looooong time out. I'd go to any Walgreen's or CVS and find me a blank greeting card with a nice spiritual pic on it. I would sit down, and think hard, hard and looooong on what to write on that card. Don't get me wrong, I wouldn't write something ugly on it. I would pour my heart out, I would use nice language. I would tell him that if he had a heart, or if he knew better he would not have made that harsh remark, and hurt your husband's feelings to where suicide crossed his mind. I have read many a post, and this si the worst incident. Get you a card sweetie, pour your heart out, bring him to his knees. God bless you and your husband!

Irma

[liz]

KCAL -

You've got a long way to go before you've posted too much. Our circumstances beg support, which begins with sharing.

Liz

[KCAL]

Cindy, Liz, Irama... G'day and thank you...... I sit back now (after venting) and think about the situation and am pleased that I didn't start whipping like a cut snake as I wonder if the situation became hard and uncomfortable for our neighbour and his reply was a nervous reaction, these guys only deal with cows, tractors and fences all day, the days are hard as to are the conditions and even when they get home the majority of them crack a beer and sit on the verandah, even if they have a family. So I wonder if it was a knee jerk reaction..... whatever it was, I have to forgive and just pick up the pieces and not become bitter, heaven knows theres enough bitterness in this world......:-?

On a lighter and more positive note..... this Friday we head off to our new doctor to restart testing, I'm looking forward to having tests explained to us this time and who knows, Monday is our 2nd wedding anniversary so maybe, God willing we may have a little good news whether it be from the Doc or the physio, oh and it looks like or baby will be delivered on Valentines Day (c-section), no matter how hard things are I know that my God is great and I read somebodies tag line the other day and it has stuck in my head - Don't tell God how big the storm is - tell the storm how big your God is - Love it!!!!!

Take care everyone - Kylie:)

[KCAL]

Morning, Afternoon, Evening everyone, I sincerely hope each and everyone of you has had a "win" today!

I feel "a part" of a very unique family here and want to thank everyone, I will be disappearing for about a week, as we put our "problems" on hold and help out very close friends of ours who only yesterday lost thier 10 year old daughter in a tragic accidental situation, it brings to life the saying - no matter how bad you think your circumstances are there is always someone in a deeper situation.

Take care all and find that "win" no matter how small it is.... my "win" today... mmmm..... I'm going to bed without doing the washing up!!! For an OCD shelia - that's a real win!!!

:-D Kylie

[Icanmanz]

KCAL, my condolences to that angel's family. You take care.


Irma

[MtPockets]

Thanks so much for sharing the "WIN" idea. It helps so much to focus on this than all the other problems.

As a Christian I have noticed that every time I have a great victory, the enemy comes in like a flood to seal it away, If I let him. You have blessed many of us with your messages here and what that bloke said was just an attack from hell. If we see it for what it truly is then we can better fight against it's affects and our reaction to it.

We all will have our faith tested just like Job in a way. Maybe not as severe, but we will be tested. It's more important how we react to the test, than the circumstances of the moment. If you have not already done so, pray for guidance in your reaction.

May the God of all peace grant you wisdom and grace in time of need.

Keep the faith,
Capt AL

In the midst of the storm, we can still see the promise of God:

[CathyAmanda]

Hi Kcal, I dont know how on this earth you are managing. I am touched to see that just like my friend so many people in this situation are able to remain positive. It is all you can do. Reading all your posts has helped me today. I now know that whatever I am feeling is the right feeling for the time. Tomorrow is another day, and things may seem brighter. Thank god for the children I say. My friend and her mum came around last friday to break the news to me. As devastated as I was that we all are going through this again, my kids aged 4, 2 and 1 were there and making me laugh through my tears. Every morning that I wake to the madness and hussle and bussle of my kids I am grateful that they are there.

I am truly sadenned for you that while you are experiencing the joy and trepidation of another new arrival it is somewhat overshadowed by your obvious fears of what the future may entail for you and your husband. I read that he had understandible thoughts after the uneducated neighbour made his remark for whatever reason. I dont know if this will help or not but when my friends brother was first diagnosed he said something very similar and I was quick to remind him that he can still see his kids and watch them grow, and have them sit on his lap and feel their hugs and recieve their kisses. Whether this helped him especially as a male as we know they deal with and look at things completely differently or not we will never know. But I think it is true. The kids are worth hanging around as long as you can for.

The support you are giving your husband is inspirational. I hope that some one is supporting you too. Take Care. Cathy

[KCAL]

Hey "wins"are a great way to get through the day, I even class not hitting a kangaroo on my way to work as a win(that is a regular event for me, my panel beaters love me, my insurance company aren't sure why they took me on!!) or not wetting myself when I sneeze (at 6 1/2 mths pregnant I really enjoy those wins!!!).... lol

Al, I find my worst "attacks" or stealing of something great that has happened usually comes in the form of negetive people, external comments, "my" thoughts or a panic moment, the first two I wish didn't exist, but I have learnt in a very short time to actually feel sympathy for them that they do not have a more positive more optimistic outlook - there is ALWAYS something great that can be found in any situation, it just takes a little bit to see it sometimes and the third and fourth, I rebuke them very quickly and the evil that puts them there and I find our higher power instantly replaces that/those thoughts if you let Him.

How are we going? Well not tooooo badly, we are soooo happy at the moment with our new doctor, who is really up on the latest bits and pieces in the medical world and if he's not - he finds out...... and then explains it in a way we can understand - he moos and clucks at us.... no seriously.... he explains it very well, something we hadn't encountered before. We have found a storage factility that will store my placenta after this baby is born for future use, my cousin who is a scientist (why I didn't get those genes is so unfair) is working very closely with stem cell researchers and is finding great contacts for us. My wonderful husband is in a really positive frame of mind and smiles a heap more, which is great... 'cause I reckon he's a bit more of a spunk when he grins :wink: We head off to a neurosurgeon in 2 weeks to rule out or confirm cervical myelopathy (I feel really smart when I type big words, I feel even smarter when I can explain what it is!!!!lol), this decision was made by our doc when he read our MRI report and researched a little more about the disorder and realised it can affect both hands and legs without losing any sensation.

I feel, that there may be people, right now, thinking, She's Just Grasping? No I don't believe so, if you don't get it checked, you could be wasting for no reason..... I know that my husbands dx could definately be MND/ALS but I also know that it may not be, and that this journey and process is for some reason, it's like being chosen for the possibles or probables teams, either one could be the outcome.

I guess I've put my trust in God and we aren't going to block or reject anything that is put to us, as it just could be our answer, it may not be, but it could be... if you ask and then don't listen, what's the point of asking....

On that note, I'd like to encourage everyone to not immediatley reject something that is placed in front of you (i'm not saying go sacrifice a chicken or anything like that, PETA tend to get a little upset) it just could be YOUR answer or something on this journey you're suppose to do.....

Have a think about it and while your at it - What's your "win" today? Mine... I didn't get cranky with my husband who left toast crumbs all over the bench, it actually didn't worry me....... HAVE A GREAT DAY!!!!:-D Kylie

[KCAL]

Cathy, a huge hello to you, how's Adelaide, I so love that city, the only thing is when I was there about 3 years ago it was sooooooo dry - have you had any rain lately? At the moment in our part of Qld we a very fortunate - the dams are mostly full, the cows are looking fat and the farmers now have sore necks from looking down to see whats coming up rather than up to see whats coming down!!!!!

Cathy I do have some wonderful ppl that support me, I do get very emotionally tired but I find my job keeps me going, I'm a breakfast announcer and have to keep it upbeat - but it does become draining especially when my husband is having a down day.

The children have become Garrys inpsiration and his drive, my sister asked him how he was going the other day at the races (mmm I lost, but I always do!!!!) and his response while looking straight at his son, was, I have to be okay, don't I..... it wasn't a bitter reply, but a very positive one, which made my heart do a little flip and put a bloody big grin on my face, which matched my bloody big hat and stomach!!!!!:-D

[CindyM]

I know what you mean Kylie, about not getting the good genes!:-D It didn't happen to me either! Enjoy your evening and all those "wins."

[CathyAmanda]

Hi KCAL Adelaide is still dry my mum and dad live in the riverland and had rainwater tanks installed to help with the whole Save the Murray Water thing. Now all we need is Rainwater...... I thought we may have had some more November rains than we have had but it hasnt happened yet. I was stoked when I read about your husbands reply to your sister. The same happened to all of us on Sunday it was my friends mums 60th on sunday and only half the family know of Julees diagnoses. We were all "OK" for the day and much to my surprise we kept our smiles on and had a great day. It is easily done with upbeat beautiful ppl. I dont know how her parents do it especially after losing their son to mnd not long ago (feb 07). There is a lesson to be learned from them all.....(one day i will have time to figure it out.....)Cathy

[AngelManFL]

Kylie,

What a wonderful pleasure it has been reading your story, I will pray for you, your husband and soon to be two children. I was just recently Dx with ALS and it has just devestated my entire world. Somewhat like your husband I worked 12 hour days all my life. I guess you could call me a workaholic - I just love the rush of the stress.. Your notion of just finding at least just one "Win" a day sounds so fantastic and I find you truly inspiring and uplifting! I too struggled with Dr's - for almost a year - I finally went to a certified ALS Clinic and everyone there was kind and so thorough and willing to explain things that gave me such relief. I go this Thursday for to get the results of a whole new battery of test they had done on just my first visit!!! a Nerve Conduction Study and one where stuck these long needles in all my muscles(it wasn't even painful!! not quite sure if that is good or bad though, lol!) another one where they took 13 vials of blood!! then some small fiber blood test had to send to the Mayo Clinic... I'm trying really hard to stay positive and yet not get my hopes to high that my heart will deflate either. The people here on this site are just amazing and so full of love and encouragement and helpful information - I truly do not think I could have survived the past month without them.. Welcome to this incredible family with open arms and lots of God's love. I'm so happy your husband is gaining a more positive attitude, it takes time after being told you such a Dx...

Good luck at your next Dr's appointment too! and never feel bad about asking them too many questions.

[KCAL]

Hi Everyone, apologies for dissappearing without notice, I had to be flowen out rather urgently by the Royal Flying Doctors (an amazing organization and amazing people that cover outback Australia) as I went into prem labour (26 weeks) so it was panic stations all around (alls good now we're back on track for the 20th Feb)as I spent two & 1/2 weeks in Brisbane. I actually feel a little guilty, while I was worried for baby, my major concern was that the organization that was to store my plactenta isn't set up yet to do the storage (this is a new thing for Aust, private placenta storage, but it is a "win"for us, well not for us, as they won't be ready, but a "win" for other Australians who will in the very near future be able to access this storage, I guess somebody has to be first and to push things along a little). So it's cord blood for us, for now anyway..... nobody knows what tomorrow will bring. So anyway bubba is ok and my push on the medical world continues. The couple of weeks there were actually a blessing, I had quite a few "wins"and met alot of positive people with a shared passion and Garry got to spend time with his mum (not something that happens very often), as she came out to look after our little fella.

Garry's appointment at the neurosurgeon didnt have the outcome I would have liked to have heard but there was a bonus, he won't have to go through painful surgery. Plus it was fantastic to have the MRI's explained to us - it took a little pushing to get him to do so, but I'm a good pain in the butt not to mention persistant (plus a few tears from a pregnant mum holding a baby helps - LOL).

So what's next for us? Well an awesome Christmas first up, as I hope each and every one of you and your families have as well, filled with Gods blessings (look for the little ones rather that the obvious ones, they may be harder to see, but sometimes they have a bigger impact on us), then in the new year it's registering Garry for trials at every medical institute in Aust. For those of you in Australia, for more information on places conducting trials or to find out in lay mans terms anything on stem cells/research/collection contact Stemlife in Brisbane - amazing people, a real "win"to find them!!!

As for Garry, things are pretty stable at the moment, life continues as too does my search and seeing him smiling and being positive is enough to get me through the day. Don't get me wrong, I still bawl my butt off every day and I sometimes wonder what it would be like to have a day when I didn't shed a tear, but that won't happen because they would then be tears of joy!!:-D

I thank everyone for their prayers, we have had prayers and thoughts come from all over the world, from people I don't know and from people whom I would have considered "too famous" to care about a couple of people from outback Australia. Thank you...:-D

[Al]

I'm only famous on here but I care. Even if you live down under LOL
AL.