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Lory

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Aug 27, 2013
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Loved one DX
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Baltimore
My father was diagnosed with AlS in early 2013, limb-onset. Started with weakness in his arms. Fast forward a year, and he has lost about 80% of the use of his arms. His voice and swallowing are still very strong, and legs are strong. He says he has been having fasiculations in his legs for a long time, but they haven't increased much. He takes long walks with my mom each morning and doesn't need a cane.

I got engaged on December 24th and am super torn about when to have my wedding. My mom would like it to be this year because she is afraid my dad's progression could speed up and we just don't know where he will be symptom wise. My dad is adamant that he does not want us to do the wedding this year if he is the only reason for doing it. In a perfect world I would love to get married in early spring 2015. My fiancé is starting a new job this year, we have to move in the next few months......

My dad is 67 and I read that the average lifespan for diagnosis after age 65 is only 2 years! However it seems my dad is progressing relatively slowly. I would never forgive myself if I set the wedding for a year and 5 months from now, and he passed away in that time. If a progression starts slowly as my dad's has, can it suddenly speed up? The doctors won't really tell him anything. The only gauge we have is him comparing himself to others in his support group that were diagnosed at roughly the same time. He seems to be progressing more slowly than most.

I admire every PAL and CAL so much on this forum and reading the posts is so helpful. I just want to do the right thing for my dad and for my family. Any advice would be so appreciated
 
Congratulations on your engagement!
My neuro says that progression rate usually stays the same. It doesn't speed up or slow down.
My progression has been rapid & steady. Has not slowed down. No one can say for sure if your dad will still be walking or not in spring of 2015. You can't predict anything with this disease. I wish you a long happy marriage :smile:
 
Congratulations Lory on getting engaged. Hope your marriage works as well for you as it has for me. I agree with Txgirl. Limb progression rates stay pretty constant. If he has experienced little or no deterioration in his walking, breathing or speech in a year, then he should be still walking and talking in a year. His arms are another matter obviously. The problem may be that he will be unable to use a cane when his legs begin to weaken. So this makes it a tougher call. I do think you can be confident that he will be able to use a wheel chair by then if necessary although he may need to be pushed.
 
Thanks so much for the replies. I know my dad wants to be at the wedding, but I don't think he cares too much one or or another about walking me down the aisle. I would be fine with him in a wheelchair as long as he is comfortable.

I wish there was more information about charting the disease progression. It's so hard not knowing.
 
As long as his respiratory function is good he will be at your wedding. That is about the only way to judge is by monitoring breathing.
 
I actually just posted in another section about progression- that's really comforting to know about the breathing. Thank you. :)
 
Congratulations on your engagement!

Let me talk about this from a different angle. I'm a father of three daughters and I have ALS. Two of my daughters are married, one is engaged. If your father thinks about his daughter the way I feel about mine; you should get married exactly when it's right for you, not a minute before.

Good luck. God Bless.

BK
 
For my PALS, progression does indeed speed up and slow down, and moves around his body as to what parts are progressing particularly fast or slow at any time. That's not a thing that changes daily, more like one month he may have speech and swallowing progress fast, then it may stay around that point for a couple of months whilst his hands and arms may progress more.

He is bulbar onset and the first 6 months of bulbar symptoms he progressed fairly steadily, then for 6 months his bulbar issues stayed almost completely at one point, and the past few months have been progressing again.

However, as he notes, he has lost a lot of functionality all over parts of his body, but so far has not completely lost any part.
 
Thank you so much!
 
Lorry,

I was in a bit of the reverse situation. I met the love of my life five years ago, AFTER I had been diagnosed with ALS. I was married 2 1/2 years ago and my daughter came to my wedding. Ironically she became engaged shortly after I did and is still engaged. It's a topsy-turvy world.
 
I'm so sorry you're going through this. I was in the exact same situation so I wanted to reply. (And my husband's mom also has cancer, so that was something we took into account as well.)

My then-fiance and I stepped back and thought about what a wedding really is about. It's about forming a union, and celebrating that bond of love with those of us who matter to us most. Everything else is details, and we decided that most of the picky details didn't matter; we'd rather get this done, have our loved ones with us in the best health possible, and as a bonus, we would be married that much sooner, which was of course the main goal of the whole thing. Despite us both working multiple jobs and one of us in grad school, we planned a medium-sized wedding in about 2.5 months. We didn't stress. We did a lot of DIY stuff for it, with the help of family and friends who offered help. We had a free venue at a beautiful local waterfront park, invitations, food, drinks, flowers, favors, a cake, a white dress, decorations, it was very low cost, and everything came together beautifully. A couple years later some people still comment to us that it was one of their favorite weddings ever.

I am so happy and grateful we did it that way. I was looking back through the pictures just recently and it means a lot to me that both of our sets of parents are there smiling and enjoying themselves with us. My dad is still alive, but his energy level is very low these days, and he would not have missed but, but he would have struggled a lot more being in a large group the longer we had waited. (And I know that not everyone's symptoms will be the same, but energy has been one of his). Plus he requires some assistance now, and nowadays he is less at ease in large groups.

I should also mention a pleasant extra surprise. Since being married, our bond with each other and each other's families has only continued growing, and it's been fun to have that evolve. It is a little bit different being married than engaged. I know that sounds weird, and I'm not describing it well here, and maybe it's not like this for everyone. But for me personally we have all really bonded well as a new family, and that has helped create more memories that I'll always treasure. Plus I know that as my dad struggles, family is comforting to him, and he lives vicariously more through us. He says that it makes him happy that I'm happily married and that he has gained a son in law who he has become close with.

I'm new on this forum, but if there is a way to private message me if you want any suggestions on how we did our wedding please don't hesitate.
 
Hi.
Sorry to hear of your dad's diagnosis. I was just diagnosed in August, but have had symptoms and limited mobility since 2010. My problems started in my legs. It's really tough to predict progression, but my neuro also said progression is fairly constant, although ability to do things moves downward in a stair- step fashion. I attended my son's wedding this past summer in a wheelchair. Since it was out of town, it would have been easier for me if it had been sooner. In this town, not a big difference. I would probably try a compromise between the optimal time and sooner, so your dad can enjoy it more fully. All the best to you! Have a beautiful, memorable wedding!

Linda
 
I want to echo the thought that slow progression stays slow. I had a probable diagnosis in 2009 a definitive diagnosis in 2011, and I am still talking swallowing breathing. My neurologist said that slow stays slow and fast goes fast. In less it's a really big hassle however I would do the wedding soon. It would be so much nicer if he could walk you down the aisle rather than rolling down the aisle. I can still do some standing and self transferring but I use a power wheelchair for most the time.

Congratulations and good luck!
 
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