Our lives changed over night

[pudge44]

Well sadly my husband got a difinitive ALS with bulbar onset diagnoses yesterday, this is how it all went........... he asked him a lot of questions, then checked his reflexes then said i would like to do another quick EMG to see what is happening and it was quick compared to the last one ( that lasted an hour and a half ) then he said we want you to start coming to the ALS clinic once a month where you will be connected to the right people ongoingly, so I asked him "so my husband has ALS and he said yes", I said would you write a letter stating so and he said yes, he said just contact my main nurse to let her know what needs to be in the letter ( we were his last patient visit for the day) and it is a friday :0( so that was that :0( My husband wanted to know how long he has and the docotor could not answer him I guess it differs from each person with ALS and that upset my husband the most as to him it has no time set :0((((

 

[LizT]

Im so very sorry to hear of the diagnosis. It is very hard. But maybe its a good thing that your doctor didnt say how long, because in all reality, they never know. And if the doc wouldve thrown out, say 4 years, then your hubby would expect to be gone by then, when he may have many many more years.
This is a very difficult time for you and your hubby. know that we are all here to help you through this.

 

[pudge44]

thank you for your wise words you are right about the timeline but I understand how confused it makes my husband :-( he is a man's man, I also cannot believe how fast this process if diagnoses has been it took precisely 1 month so it is a doble edged sword as I know many folks have a much harder confusing time getting to the point my husband reaxched yesterday <<hugs>>

 

[KC2U2]

Pudge,

My thoughts and prayers are with you and your husband this morning. Although my diagnosis oficiially took about three months, I knew when I asked the doctor administering the EMG and they wouldn't answer me. It is hard to understand how even the "experts" know so little about how this starts, why it bulbar for some and limb onset for others, how it will progress and how long any of us may have. The first few days are really rough, but then hopefully he will realize that he still has a life to live and to give, so live it to the fullest.

 

[crlester]

I know exactly how you feel. I found out I have Bulbar onset ALS on 12-23-10. I had to tell my kids on Christmas Eve. That was the hardest thing I have ever done. My kids are 35 and 25 but it is still hard. I am living in the "Land of Denial" for a few weeks until my appointment with the ALS doctor. I will get my reality check soon enough. My symptoms started in May 2010 and it started with a very dry mouth and trouble speaking. At first they thought I had Sjogrens Syndrome but I knew (I have been a nurse for 35 years) my speech should not be this affected with a "dry mouth".
This is my first post and I need all the help I can get as to how to do this forum.

 

[abbas child]

criester, see the blue bar near the top of the page? On it are white words. Click onto "FAQ" to get a lot of information quickly... and your name up in the right corner, or anyone's name in blue--just click onto the name and you go to your/their profile page. True also of all underlined blue words.

Kim, my heart goes out to both you and criester. How can you not grieve, especially in the beginning. But you know that this forum will try to help you in answering questions and in understanding all you're going through. I pray you all are comforted. It takes time to accept and absorb this.
xo,
Ann

 

[pudge44]

Ann you are THE BEST :0)))) thank you for the love ty ty ty, crlester I am so very sorry for your diagnoses and I so get how you feel right now this forum will ride the waves with you all the way along, the people here are the most loving of all people and here you will find a very important sanctuary, looking at what you wrote is exactly what my husband just went through and your timelines are almost exactly the same, I have sent you a friend's request, after you have made a certain amount of postings on the board you will be able to recieve private messages that are between you and others you have as friends ((((((((((((((( big hugs to you )))))))))))))) from Kim and Don

 

[Pat Paine]

Dear Kim and Crlester,
Welcome to the forum, I m sorry you need to be here, but you will
find answers, caring support and prayers during your time with us.
blessings, Pat

 

[crlester]

I have decided ALS only picks on really nice people. I attended a support group in my area and everyone was so nice and helpful.
Abbas Child thank you for the info on the forum. I do data entry at my job daily so sometimes when I get home I do not want to look at a computer, but I feel this will change soon and I need all the help I can get................

 

[abbas child]

I try to spread the information due to my own lack of ability. It is embarrassing to share how totally ninconpooped I am. Yes, you might want to deal with the computer at home while this time of learning takes place. As a good typist as well as a bulbarian, you'll probably end up being a very important member of the forum!

Of course, Everyone is a VIP here!

 

[kelly]

Hello Kim and Don...
We know to well the emotional roller coaster that you will travel. You mentioned that your hubby has bulbar onset....is his speech gone? The reason I ask is for you to consider voice banking..so that when your hubby uses a communication device..it can be his voice. We waited to long. Also, it is never to early to start investigating the different augmentive communication devices. I know the wounds are so fresh.......and I hate to throw this on you. I just wish I knew about voice banking from the beginning. Also...my hubby and I met at Keene State College...and graduated in 89 and 90. Keene is close to our heart. Stay Strong!
Kelly

 

[TedH5]

So very sorry to hear about your husbands diagnosis...As everyone else has said do not focus on timeline's. everybody is different and nobody knows. There is life after diagnosis. I prefer to think that I am living with ALS rather then dying from it. I know it is easier said then done but I do believe that a positive attitude can help and certainly can't hurt. Yes there will be good days and bad days that is normal. It is OK to cry together but do not forget to laugh together and hug each other and most importantly continue to love and support each other!

Life goes on, you just have a new changing "normal". My prayers go out to you. Stay strong and keep the faith!

 

[arkallen]

Dear Kim and Don,

Welcome to a wonderful part of the world! I am sad for you both, of course, and the fact that you are here is not wonderful at all. And yet there is a lot of good living to do I reckon.

I wanted to add my encouragement about voice banking also. I actually don't have a confirmed diagnosis, but my experience seems to fit pretty well with MND. My voice is fading away, and I have just started to use a synthetic voice on a computer every now and then late in the day when I cant keep going. I recorded a voice through "Model Talker" (you will find it readily with a google search). this is a free service; and although it doesnt work well for everyone my result was quite usable. there are 'voices' that can be purchased that are certainly clearer; however my wife much prefers the Model Talker voice because she feels it sounds very much like me, albeit a bit hard to follow. I don't know if any of that is relevant to your situation of course.

Keep in touch; I so hope that the load you are carrying starts to lift in the coming days.
Blessings.

 

[smwelder]

sorry you and Don are here on this site. as a stated before knowone knows how fast we will travel this path were on, this uncertinity is the thorn in all pals sides. in the few months since my diagnosed, i have lived my life out in my head. doing that only caused me stress and sorrow. doc put me on antideprssents. since then i realized i cant change my diagnosed and i know the things that can happen. so, i need to live in the present and do what i can still do to live my life to the fullest.

 

[pudge44]

thank you all for your encouraging posts it means a lot to us, we are experiencing pc issues so have not posted till now, can you tell me if there is a voice bank that can actually record my husband real voice? and if there is something like this is it free? and send me a link much love to you all xoxo <<<<<<<<<<<big big hugs>>>>>>>>>>>>>>>