My Husband Has MND

[CaringWife]

Hi Everyone,

I would like to introduce myself. My husband has been diagnosed with MND. I have been lurking on this site since January of this year because ever since the first dirty EMG back in August of 2012, I have been wondering if this would turn out to be ALS. Because he is so slowly progressing, and only has lower motor neuron symptoms at this time, the neuro-muscular specialist at Brigham & Women's in Boston will not call it ALS, but said he strongly suspects it, and offered him Rilutek, which he's refused because of the side effects. (His diagnosis code is 335.29) The doctor told us to come back in three or six months, when we feel like enough changes have happened to warrant another EMG. He has had three dirty EMG's so far with involvement in both legs, and in the lower lumber area of the back. He has moderate atrophy in the left leg and foot, and mild atrophy in the right leg. He is still walking without assistance, and is still driving and working. Only recently he has begun stumbling on uneven ground, so we are not sure when he will be unable to walk on his own. He has intermittent cramping, but nothing like so many others on here have experienced. Very recently, his speech sounds a little different at times, moreso first thing in the morning, and when he is tired at the end of the day. I also notice when he is sleeping that his lower lip twitches, and the area between the nose and upper lip as well. Sometimes, his jaw moves very quickly and quite hard several times in succession. He is biting the inside of his cheeks while sleeping, and he is yawning a lot. I have been so inspired by the honesty and courage of each of you on here, both PALS and CALS alike. I know it will do me good to finally be talking to people about all of this. We have six children, ages 19-32, and we are not going to tell them until we get a firm diagnosis, and a second opinion. They know he has something neuro-degenerative going on, but they have not asked a lot of questions. I have told them it is progressive, but have not mentioned it being terminal. My husband is the king of denial, and all of the kids seem to take after him. Don't ask, and you won't have to know. This makes it lonely for me because it is not discussed openly. It will be a relief when we can finally talk about it, but for now just being on this forum will be a huge help to me.

 

[Nikki J]

Hello Ellen
I am so sorry that you have to be here but glad to meet you. Slow progression is good It seems as if you have a partial diagnosis at least but this must put you in a tough position for ssdi etc. where are you going for your second opinion? I always recommend MGH. The doctors and the staff are awesome. You will feel relief I think when you can share this with your family.
Take care
Nikki

 

[CaringWife]

We are going to return to Brigham and Womens first, and if Dr. Amato calls it ALS down the road, then we will indeed go to MGH for a second opinion. SSDI is a dirty word, and I cannot even broach the subject. He is extremely proud, and still in denial, so we will have to ease into that. I wish we could be more pro-active, but I see this as being a very hard road because he will not want to get assistance devises ahead of time. I am also starting to worry a bit about FTD because he has had some personality changes and forgetfulness over the past few years. It has me very concerned, but I haven't brought it up to the doctor yet because he will go through the roof if I do. At so,e point I will. Thank you for your kind words.

 

[Barbie]

Hi Ellen, I am so sorry for the trouble your family is going thru. It is a terrible thing, and we all understand that here. You will find alot of help and friends here, and I promise you just talking about things will make you feel better. we do not get tired of hearing it--we are all living it too.

I hope that you will talk to your kids very soon, because they are not really kids and they will be able to give you both so much support and help while you get a positive diagnosis. It is not too soon, and they may be upset if you hold the truth from them. Telling is the hardest part because you don't have all the answers and it is very raw pain for you now. once it is done, you will feel free. my husband is also a king of denial--we didn't tell anyone for a year, and it was horrible!

Good luck,

B

 

[hjlindley]

I 2nd the recommendation for Mass General. It has a large clinic, lots of experienced physicians and lots of clinical trials. I'm a personal fan of Dr. James Berry for his intelligence and kind demeanor.

 

[pearshoot]

Children see it progressing and you still don't tell them, sorry I don't think its right. falling is dangerous, I have fallen a few times fracturing ribs twice. get on a walker immediately, no more denial. what would your excuse be if you fell in front of your children and was seriously injured. being injured increases progression. you need to start making plans now and not later. if you have specific questions please pm me. success

 

[CaringWife]

It sounds like you all think we should tell our grown kids. I guess if the doctor was coming right out and saying it is definite ALS I would feel like it would be time, but he is calling it MND, (diagnosis code 335.29, "other motor neuron disease") and saying he won't call it ALS until it moves to more areas. Is the fact that he offered him Rilutek a sign that the doctor believes it is ALS? I was wondering about that when he asked him. Is Rilutek ever used for anything else? I mean we have told the kids that it is a serious neuro-degenerative disease, and that it will not get better. I feel like that is a pretty intense thing in and of itself to tell them. They just haven't pressed me with any more questions. I tend to want to tell them the terminal part when we heardefinite ALS. This is the hardest thing ever, and I have had my share of heartache, losing a daughter in 1991, and losing three of our parents in three years, two of them very suddenly. As a mother, it tears my heart out thinking about telling the kids that their father is terminal. I so want to wake up from this and find out it is just a bad dream. Thanks for letting me get this out. I am struggling. We have many grandchildren, and I crumble thinking of them finding out about their Grandpa.

 

[Nikki J]

If it were my family I think I would want to be told the facts. It sounds like the doctor is thinking it is ALS but he does not meet the strict diagnostic criteria at this time. I do not think there is any other use for the rilutek. This is a horrible thing for all of you. If you have not been told it is ALS then tell them what you do know and what you think and fear. It will be hard to do but better afterwards. I am so sorry for all your other losses as well. When do you go back to the Brigham? And re your fears of FTD email call or write to the doctor ahead of time and ask him to keep it confidential
Best of luck this is such a hard time

 

[ECpara]

So sorry for what you are going through. I agree with everyone on this forum who thinks you should tell your children. I let my children (both in their 30's) know my fears that my husband might have ALS before he was diagnosed. It eased the inevitable news. My daughter in particular read up on it and has been a major help in helping us meet obstacles head on. We take one day at a time. We now live near our grandchildren, sold our house to move near them. They know Pop-pop has something wrong since he can no longer talk. But they accept him as he is and it eases our burden. Also, Tom was put on Rilutek the day he was diagnosed. As I understand, it is only used by ALS patients. Lean on God, he'll give you the strength to meet each day! God bless you!

 

[CaringWife]

Hi Nikki and ECpara,

You were both so kind and thoughtful in your repsonses. I have decided I am going to tell the kids soon. This is a big step for me. I will let you know how it goes. It WILL be such a relief because I have been carrying such a heavy burden of secret worry since his first dirty EMG last August. He and I don't even talk about it much because he is just carrying on, and told me he is going to work until he drops. This is typical of him. To answer your question Nikki, our doctor told us to return anywhere from 3-6 months from when we saw him in May, depending on how he is doing. If he continues falling, we will make the appointment sooner than later. It only takes three weeks to get an appointment, so we'll see. As far as your advise re: the FTD, what a good idea! Yes, I will definitely give the doctor a private heads up. God bless all of you who have reached out to me in the past few days.
Ellen

 

[CaringWife]

I am wondering if there are any particular words that will send a message to moderation. Two of my messages have gone to moderation since I joined this week. Or is it just because I am new so they monitor you more at the beginning?

 

[Nikki J]

It is completely the words that trigger it not how long you have been here. We do not know all the words but some we guess that is why you sometimes see strange spaces in words trying to avoid triggering the mod. I think go ogle is one cu re another. Links usually trigger it as well
Hope this helps

 

[CaringWife]

Will the two messages I typed that are in moderation ever appear on here, or should I assume they are gone? One is from July 8th, and the other from early this morning. In one, I went into his childhood cancer, and told about how it has affected his spine. It is an amazing story, and I spent a long time trying to sum it all up and put it in capsule form.
Ellen