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Hi Ises & Penny

Also from Michigan. I am still reeling from the speed that everything happened in the past year. I find this site, particularly this forum, especially helpful when I am looking for insight into the feelings that will sometimes just overcome you.

I hope you too will find it helpful!
:wink:
 
Hi Judy, I am sorry to hear of your moms passing , I am new to this forum and new to the recent diagnosis of bulbar als. My mother had symptoms about 18 months ago with poor speech and they diagnosed her with spastic dysphonia and gave her 2 botox injections with little effect but she then developed difficulty swallowing which we thought was related to the botox. My mother did not want to persue any further doctors until she could barely drink without chocking and had numbness in her lips and her face looked mask like,,frozen almost but did not have any real weakness in her arms or legs..after a brief hospitalization due to dehydration { she had 25 lb wt loss.. we got the terrible news...she always says it could have been worse as she is near 81 yrs old and feels blessed that this didnot happen at a much younger age...we just keep pressing on and make the best of what time we have left..no one knows what tomorrow will bring go we try to be grateful for every little thing..it could all be taken away in a blink of an eye....My my I ramble... have a wonderful and blessed day.....Lisa
 
Hi Renee,

Yours really was a whirlwind of a journey, wasn't it? I thought ours of 2 years was fast. I'm still trying to figure it out, too. Jeff & I were married 27 years, and he was my best friend and soul mate, too. So, we mourn that loss as well.

16 weeks, 1 day, 11 hours.....
 
Ises, I'm so saddened by your sudden loss.

Our journey was quick--8 months from first symptoms until the end. I had really expected several years to come, and was even designing a house when suddenly Krissy whimpered a teary "It's time to call hospice." She was gone two weeks afterwards. We were married 20 years.

It's been a year, now, and my teens adjusted well. Both are active, athletic, popular and studious.

But I'm known for getting to the blunt point immediately, so here goes:

1. Meds and therapy: Search around for a therapist that can make you smile one day a week. You may have to try several, but it's worth it.
2. Antidepressant and sleeping meds are a Godsend.
3. Avoid more than one drink a day.
4. A good pool table and a ping pong table are worth their weight in gold, and might be nearly all the therapy the kids need.
5. Recognize that your husband would want you to get on with life and be happy.
5.a. No rush.
6. Music and TV and books: anything to get your mind off.
7. Crying daily is OK.
8. At work, the HR people can help you take A LOT of time off.
9. Come here often. Lots of good people.

I took my time, in fact, I haven't yet discarded, donated or bequeathed all my wife's stuff yet, but it's getting easier to do.

It took a year, but now I started a masters program, and it's really a great re-introduction to the social world.

I hope that something in here might help you on your journey into the future.

--Mike
 
Very good Mike.
 
Sound and sensible advice, thank you. I did just start with a grief support group, and am learning how to proceed through this new journey of grief. I am concerned with how "normal" my boys seem. They are not interested in counseling, at least not yet. Though they, too, did have 2 years of grieving before Jeff ever died.

I also see that many of us had an astonishingly fast progression. I do know what the stats are, but it sure seems like more than 50% don't make the 5 year mark. We were blessed with a beautiful, accessible addition to our non-accessible home, built by our church family, and Jeff was only able to use it 4 months. We, too, were hoping for at least a couple years.

Seems to me our biggest ally, and the best gift we can give ourselves, is time. Time to process our grief, to find out who we are now, to deal with possessions, and on.
 
Yes, time is key. Getting things in order, in your own way, is key. It provides peace of mind.

Love to you all...
 
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