Just over a year ago...

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PDaddy

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I made my first post here about 13 months ago:



Now I have stopped working, started on Medicare 3/1/09, can only walk with help, can't hold anything with my hands, and can barely speak. ALS SUCKS! I'd be lost without my wife! :-D
 

rocmg

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do you feel your progression has been very quick PDaddy? It sounds like it although I don't know.. Does ALS feel a little more 'normal' now? I mean, how do you think the changes your body has experienced have changed you, your personality, if at all? Sorry for all the questions, but I am genuinely interested.
 

rocmg

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p.s. kudos to your wife for being such a great support.
 

thelma313

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PDaddy, I agree ALS sure does suck! I wish so badly that there was a cure. I'm happy to hear your wife is so wonderful. My mom is amazing to my dad who is a PALS too. Thank God for family! I wish you the best. I hope you experience a total plateau.
 

Zaphoon

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rocmg,

Any rate of progression with this kind of disease is too fast.

Zaphoon
 

rocmg

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but people do progress at different rates, right? or is it usual to see the most rapid changes in the first year? i understand it's all rapid and people would much prefer that it didn't happen at all. just curious is all.
 

hopingforcure

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You were my buddy since that first post. You have always been someone who makes me laugh. Sorry you are here, but glad you are a member.
 

BarryG

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PDaddy, I've only been here for a few months but my favourite post ever is your "I miss the little things". You're so right when you say that ALS sucks! I wish that no one had to be here but I'm glad for your posts anyway. Thank god for our good wives, I too would be lost without mine. Take care and thanks.

Barry
 

hopingforthebest

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Like reading about us wives getting gold star!

Hey guys,

Don't know how long the "Mrs." has had the title but mine is 36 yrs this past January.

My hubby cannot do anything for himself but still walking! Thank God. Anyway, every

day and everything I do for him he thanks me, tells me how beautiful I am (and I am not!)

and he gets emotional just telling someone what I do. What I am getting to is........

keep up the kuddos to us, as we love it and it is our pleasure taking care of you

bums! lol

Love you all and pray for everyone on this forum that goes through this stinking rotten disease.

Patty:(
 

Jennifer51

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Pdaddy.. we are similar in age, marriage and timeframe with this crap. I was 56 when diagnosed about one year ago. Married for 37 years...Now, one year on, can only just walk with help or walking frame, cannot speak at all, hands getting weaker now, but still useable. I think the first 6 months after diagnosis I remained quite stable, but the last 6 months seem to have gone downhill a lot faster..waiting for the plateau PLEASE.. I agree about our partners, my hubby is brill, dont know what I would do without him. He is getting really good at doing the laundry, cleaning and cooking and without him I would certainly have to be living in an institution, just not on for someone of our age. Hubby also has to deal with my tears, anger and frustrations with not talking and at the whole dreadfull disease. Waiting for that cure TODAY.....
God bless our carers.
 

BarryG

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This post has just made me realize that it's been just over a year since I got my diagnosis. I'm pretty much the same age as you Pdaddy (53).

What started out with a slight slurring in my voice has progressed to severe speech problems where very few people can understand me at all and even my wife has a lot of trouble. Eating is also a problem but at least now with my PEG I can get nutrition and water so that's ok. But I still would love to be able to eat a hamburger or a piece of pizza. I've always been skinny so now I really need to put some weight on.

Hands and walking are still ok so I'm still able to do stuff around the house but I don't have the energy I once had.

My wife, Beth, and I will have been married for 25 years on December 29, 2009 and I'm looking forward to celebrating it even if I have to pour the champagne into my tube. ;-) (message to my dietitian, I'm only kidding!) We grump at each other every now and again but I can't imagine any other life (Ok maybe one without ALS).
 

PDaddy

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Well, a lot of us seem to fit the "average" age for ALS! Also, Diane and I have been married for 33 years this June!
 

rick/Wpg

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Hey there...yea...that average age thing is not nice for some of us...I was diagnosed last Feb1 and had just turned 55 on Jan.11....hmmm.....always active,loved to fish, camp,etc,...there are weird similarities with this thing!
Mine is a bit different from yours....limb onset...so...speech is just starting to be a bit funnny, same with swallowing, but went from diagnosed last Feb and not even on a cane to now in a power wheelchair all the time and arms going fast..just got our hoyer lift and hospital bed is on the way...this damn thing is no fun ....no matter how it plays out!
The forum is a godsend tho.....and I really appreciate how open and forthright everyone is on it! It helps!
Rick
 

ktmj

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PDaddy you are an inspiration dude - I also agree the "little things" post was a classic.

I am undiagnosed'ed but definitely have something neuromuscular going on. At any age it stinks, 20 or 90. I am simply grateful for every moment on the "right side of the grass".

I think somebody once asked George Burns "who in the world would want to live to be 100 yrs old?" and he said "Anybody that is 99.":mrgreen:
 
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