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wifeofgrumpybear

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CALS
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Hi all - I am new to this forum and new to this role as a care giver to a patient with motor neuron disease. I have been looking for a place to be able to share what I am going through with people who can understand.

My husband and I met in 2009 and married in June 2014. In May 2016, we saw his neurologist who had been treating him for loss of motion/strength in his left hand. The doctor told us that it was likely ALS and referred us to a clinic. The clinic ordered all the tests to be redone and scheduled a follow up for Aug 19th. That is all the communications that we have had. The definitive "you have ALS" has not yet been said. Today, his left hand is all but useless, the function in is right hand is severely compromised and he is experiencing systemic weakness. He hasn't been able to work since April (he worked in a warehouse) and he is able to do less and less on his own because of the lack of function in his hands.

We know a little of what is to come and it preoccupies our thoughts, but in different ways. For him, it is the loss of independence, mobility and quality of life that has him preoccupied. For me, it is knowing that all too soon, I will have to say goodbye to my best friend, my life partner, my soul mate.

It took us both a lifetime to find the perfect partner. When we married, I was 39 and he was 54. I always knew, because of the age difference, that there would come a time when I would need to take care of him - I just thought that I would have more time.

I feel like I am being selfish by concentrating on the fact that I will be left alone. That the one person in my whole life that I have ever been able to connect with in such a profound way is being taken from me in bits and pieces.

I don't really know how I am going to manage what is to come. I know that I love my Grumpy Bear (a term of endearment from the time we met) and that I hate seeing him so frustrated with simple daily tasks. It breaks my heart every time he tries, and fails, to do something as simple as open a can of pop. He hates asking for help.

I know that I haven't actually asked any questions. At this point, I more thought that it might be therapeutic to write down how I am feeling.
Thank you for reading.
 

GregK

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Sorry to welcome you here.

At the top of the General Discussion forum there are a bunch of 'what to do next' posts.

Important: is your hubby a vet?
 

lgelb

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Welcome, GBwife. You can write about your feelings any time, and obviously have good insight into what may lie ahead. There are others here whose relationships were also brief at diagnosis and I am sure they will chime in. But of course we all hope that the initial assessment becomes another disease on the 19th. Did he have a repeat EMG? Some of the Canadians here may have experience with the clinic, if you care to share which one it is.

Best,
Laurie
 

wifeofgrumpybear

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CALS
Country
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ontario
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milton
He has had two electromyographies (sp?) and is to be undergoing a third on the 19th. In addition, he had an MRI of his neck, a chest CT and every blood test they could think of - twice. The clinic we were referred to is in McMaster in Hamilton ON - we are fortunate that where we live, we are actually quite close to the clinic (about a 45 minute drive)
This neurologist indicated the same thing that the previous neurologist did - it is MND most likely ALS. We are hoping (and not hoping) for a diagnosis.

I am actually terrified of this appointment - right now, while I am sure it is ALS - there is a remote chance that the doctor could say "hey, get this, it's actually West Nile!" But once he has said the words, there will be no going back.
 

scaredwifetx

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Your story could almost have been written by me. My husband went through the same steps to diagnosis. I was also a nervous wreck waiting on the final diagnosis.

My first couple of months were the worst months of my life as I have never felt shock and grief. Like you... I met my husband later in life (39)to be exact and it took us a long time to find each other. He is eight years older than me but was always so healthy... that I thought he would end up taking care of me.

Like you, my first and greatest fear was losing my soul mate so don't feel quilty.

If you have any questions or need any support you will find it here. The waiting game is horrible and if diagnosed is so shocking the first couple of months. You will find understanding here. You can ask questions or just talk about your feelings. We are all in the same boat but we all have different techniques in the paddling, which is wonderful when we hit different waves.

My thoughts and prayers are with you and your grumpybear.
 
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affected

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lala land
So sorry to be welcoming you here. You can indeed talk about how you are feeling, and all your feelings are totally valid.
 

soonerwife

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So sorry you find yourself here. We are here for you. I too am terrified of losing my best friend.
 

Narrowminded

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Wife - Welcome home of sorts. Not exactly the home you would choose, but you will find tons of support here. Vent/talk/think away we are here for you and totally understand.

Hugs,

Sue
 

vltsra

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Messages
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CALS
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San Diego
WifeGB, sorry to welcome you here. I feel like it took forever to meet my husband as well, and I am very sad that he is ill and may not be with me at some point. I have found a lot of comfort and support here on the forum. There's nothing like being able to talk to people who understand exactly what we are all going through.

V
 

Lkaibel

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Welcome GBWife. When we married, I was 44 and my husband 59. We were blessed to have 8 years together and six married before the beast got to him. I'm sorry this has happened and happened so early in your marriage.
It sounds like your husband though is very fortunate to have you by his side. The Canadian medical system is so different from the states in some respects I hesitate to comment on the process. I know what you mean on the diagnosis, I dreaded it too but in the end it was much more peaceful for us than the first time we heard "maybe ALS".
We are here for you.
 

Nuts

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Hello, Wife. I understand the terror, and am so sorry that you find yourself here. It seems that ALS strikes the best among us. I think that once we solve the "cure" puzzle, that science should search for the "nice guy" gene that most of our PALS share.

Becky
 

Shawnlee

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Joined
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Messages
33
Reason
Loved one DX
Diagnosis
09/2015
Country
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Holly
WifeGB
I am in the same situation, we got married in 2012 and on 9/11/15 he was finally diagnosed with als. Years of tests, years of waiting for a diagnosis, never even dreamed it would be ALS. Guess I am a little behind times, cuz never even googled his symptoms to get to this forum. Has been very wonderful here. Love my husband and am so sorry you are going thru this too. Wouldn't wish this on your worst enemy. Be strong. As astugi can tell you I was a wreck when first on here.

Just be strong and realize that everything has meaning in life even if it is bad. So just vent here and never feel like you are bothering anyone.
Shawnlee
 

affected

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lala land
It was very similar for Chris and I.

We met and embarked on a whirlwind kind of relationship, late 2009.
We bought our property together mid 2010, married same date we moved onto the property a year later in 2011.
Mid 2012 bulbar symptoms started.
Mid 2013 diagnosed.
Mid 2014 gone. I was now 52 and he was 55.

Unbelievable still!

The support here is the best there is IMHO.
 
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