Status
Not open for further replies.

mbmurray

Distinguished member
Joined
Jan 10, 2013
Messages
117
Reason
PALS
Diagnosis
01/2013
Country
US
State
VA
City
NOVA
I have been reading these forums for a few months now, since my initial consultation with my general neurologist. I just came back from seeing a specialist at GW hospital, I was given the news I think I new was coming.

I am half in denial, the other half I was prepping myself for the inevitable. My next steps are to get hooked up with the ALS clinic on site there.

I have so many questions, don't know where to start. I have 2 young kids which really hurts.

Looking back my symptoms have been going on for 2 years. My right arm and shoulder have atrophied and have weakness, but I still have hand function. I can still brush my teeth, open things, etc. Fasiculations over the whole body, but only area affected at this point is right arm.

I guess I will be more of a visitor and contributor on this board as time goes on. I need a drink!
 
I'm so sorry you're here. Yes, have that drink and then count your blessings. You can start with your kids! You may have a long while to go....maybe longer than I do, and I don't even have ALS. There are tons of things that you can do, and now is the time to do them. When the numbness wears off think about how you can make today a great day for you and your family. Tomorrow, do the same. It's amazing what a positive outlook can do for you. I'll drink with you!
 
Have an extra large drink! In fact, have a couple.

You've come to the right place, but sorry you had to find us. I was diagnosed in April, but it wasn't until six weeks later that I started to get my bearings. Be gentle with yourself. There is life, a good amount of life, after diagnoses.

I won't bore you with the basic ALS info as I'm guessing you have already read a lot of the posts here. Simply stated, welcome and I hope that this circle of friends is as much of a lifeline for you, as it is for me.
No question is stupid.
No emotion is lame.
No spellcheck required.
No falls allowed!

We're in this together and we'll make the best of it!
 
I,m sorry that you find yourself here but you have come to a place full of support and knowledge. Hopefully, your progression will be slow.
 
So sorry about your diagnosis. Yes, have that extra large drink, get in touch with your local ALS Clinic and Society and they, along with the kind people here, will guide you through this new "adventure" (that's what my husband called it) in life. Read up on ALS and stay two steps ahead of progression. I think most of us here have learned to appreciate each minute with our loved ones and friends. Take care. Yasmin
 
Sorry for your news. I was 39 when diagnosed two years ago and also have three young children at home. I have a regime in place that seems to be slowing progression. Let me know and I would be happy to share.
 
Is some one serving cocktails?

I amso sorry for your diagnosis--it is very hard. your progression is similar to my husband's at the beginning so I say from experience, try to live the life you have and know that the shock and sadness will fade with time. A good outlook and positive attitude will go a long way to help yourself and your kids too.
 
Thanks everybody for their thoughts. Only got thru 2 drinks :(

Yep, hoping this is a slow variety. I am/will have a positive attitude and will take things as they come. Still hasn't completely sunk in yet...
 
Is some one serving cocktails?

I amso sorry for your diagnosis--it is very hard. your progression is similar to my husband's at the beginning so I say from experience, try to live the life you have and know that the shock and sadness will fade with time. A good outlook and positive attitude will go a long way to help yourself and your kids too.

Can I ask how long has it been since your husband was diagnosed and what is his current condition? I know everyone is different in terms of progression and what is affected, still trying to soak in as much info as possible at this point....
 
My husband was diagnosed in 1/2007 at 44 yo, after only one month of severe symptoms--which was what sent us to the doctors, but he thinks he was having symptoms at least 2 years beforehand. He had severe fascs over his entire body (very minor now thank goodness) stiff gait and difficulty talking, but his first big loss was his arms--they went first and that was where his minor beginning symptoms started.

He is now in a PWC, cant walk but can stand with aid, no use of arms, can talk but very difficult. the greatest thing is his attitude. he is positive and doesnt think about what he can't do but what he can. We didnt think he would see our 4 kids graduate, but now our last is a junior and he plans on his dad being there.

there is no magic cure or treatment, and you never know what kind of progression you will have but a good outlook will make it all a little easier. It is really really reallly hard at first for you and you family. we all cried and cried and cried and we could not accept it. Begood to your self and the ones you love--this is the hardest thing anyone will ever face.
 
I'm sorry to hear of anyone getting this disease.

My main suggestion to newly diagnosed is to plan for your future needs so that you have the equipment on hand before you actually need it. I posted some of the things I've gotten to keep me ahead of the progression under Tips and Gadgets, Things that help as I recall.

A positive attitude is very important too. The only disability is a bad attitude.

As my wife taught my children and me, "You get what you get and don't pitch a fit." Everyday with friends, loved ones or simply looking out the window on a rainy day is a great day.
 
I'm so sorry to hear your news. It must be rough to try to process this. You sound like you have a great attitude though, and from what I have seen thus far, people on this board are awesome.
 
So sorry for your news. It takes awhile to come to grips with the changes in your life.

Attitude is very important!

You can meet some of the PALS and CALS over drinks at PZ's Pub. I'll have an extra large frozen margarita!
 
Hi there

I am in a similar position to you. I received my MND diagnosis a three weeks prior to my 43rd birthday. I have a beautiful little 2 year old and a wife I love to bits.

I received my diagnosis on 10 September so have had some time to think, adjust, think, reevaluate and basically live.

We have just returned from 7 weeks travelling to Australia and the US. We have planned a trip to Chicago later in the year and another trip to EuroDisney. Basically my life has become about creating happy memories for me and my wonderful family.

I can honestly say that whilst I am still upset about my diagnosis, I am coming to terms with it. I decided that I can't change it and so I have to make the most of the time that I have.

I am told that I am very atypical a case with MND. I have loads of fasciculations and craps all over my body. I have muscle wastage but my muscles are all still functioning and responsive at this stage.

It is difficult news to digest but I feel that acceptance leads to enjoyment of the time that we have. It has been very challening and I have shed a load of tears to get to this point but I made a decision I can be miserable or I can enjoy the time I have and I have opted for the latter.

I wish you well and am happy to chat as we have a lot in common.

Warmest regards

Ian
 
Ian
You will find lots of support, good info and compassionate love here. You have a good attitude and keep it up. Nothing good comes from wallowing in self pity but wasted time. Not saying that a short good pity party isn't good for the soul because I have had a few and afterwards I feel better but making plans for the future and enjoying the moment gives me great joy. I wish you peace.
 
Status
Not open for further replies.
Back
Top