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Ikuu

New member
Joined
Jun 23, 2015
Messages
2
Reason
Loved one DX
Diagnosis
11/2014
Country
CA
State
Ontario
City
Toronto
Hi There,

My father (57) was diagnosed with FTD back in October 2014.
We are only now finding out what he might also have ALS and they are doing tests although the neurologiist seems to be convinced he has both.
I know this sounds like a weird question but with the combination of FTD/MND - how long does he have to live? It says 3-5 years from diagnosis.
As of right now he is fairly healthy, and has some issues swallowing and his muscles twitch. He has almost lost all ability to speak due to his FTD (non fluent).
My wedding is next year in August and I want to make sure he is going to be there and able to walk me down the aisle but I don't know how long he has until he starts to seriously degenerate. As of right now, if you saw him and didn't hear him struggling to speak - you would NOT know he is sick.
Should I think about moving my wedding up so my dad can be there and be as healthy as possible? What are the chances that 14 months from now he will be in a very bad state - does the disease progress THAT fast if he is OK right now and mainly struggles with speech? HELP! I don't know what to do and want to make the right decision to ensure he is with me on my wedding day as I know he would like that.
 
Everyone is different. In 14 months he could be not much worse or he could be dead or anywhere in between. Sorry but I have seen all of those happen. Unfortunately the chances are fairly good he will be significantly impaired from the FTD the ALS or both. His doctor might be able to give you a better guess based on his progression to date but that is only a guess. If I was in your situation I would move it up if at all possible. Sorry
 
Thanks so much Nikki. I appreciate you getting back to me and your honest response.
I am so sorry you are the 6th person in your family - were you tested for the gene?
I think you are right, we will try and move it to Christmas this year.
 
hey ikuu, that's a good decision and one i doubt you or dad will regret! much happiness chally
 
The worse the FTD early on, the less likely he will comply with things that would keep him alive for longer, so I think you are wise to move up the wedding significantly, so he can still appreciate as much as possible. Congratulations on your engagement.
 
Gosh what a hard question.

The combination of FTD/ALS tends to be faster progressing, but all we have are generalities and statistics which don't tell us squat about what will happen to any individual.

Having said that, if you relationship and commitment to marriage is completely strong and sound, then moving the wedding forward to as soon as possible will give you a good chance of him being there and mobile. But there are no guarantees either, so you may need to sit down and have some really serious discussions with your fiance about your wishes and your concerns.

I truly wish we could give you some kind of real answer.

Tillie (my husband was bulbar onset ALS/FTD)
 
I agree with all of the above. If you want your dad to actively take part in your wedding, i would definitely move it up and if it at all possible, i would do it in the fall. If it is important that your dad walks you down the aisle, then the sooner you do it, the better it is. We had the same experience with my sister. Her son moved his wedding up a year and she managed to have a mother/son dance with him. Could not stand on her own but could hang on to him and you can't tell from the picture. We are so happy he did that and got those happy memories with his mom. She passed a month ago.. Good luck to you and your family!
 
Ikku it is a real testament to the love you have for your dear dad to ask for guidance in this matter.
Good luck to you and your fiancé as you make decisions regarding your wedding. I don't believe moving the wedding forward and having to change things to include your dad will be regretted at all.
God bless, Janelle x
 
Such good advice you have gotten. I would move up the wedding as well...a lot can happen in 14 months. a Christmas wedding sounds really nice though!
 
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