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lisanorah

New member
Joined
Dec 1, 2016
Messages
4
Reason
Loved one DX
Diagnosis
12/2016
Country
Uni
State
Maryland
City
Pasadena
Hello all,

glad to find this support place. My sister has been diagnosed with MND. She was feeling numbness in her arm, fell of her horse as a result and then the disease was discovered. She lives in England, I live in the U.S.
From what I've read there's no way to tell how long this will take - depends on how aggressive, correct? I don't know whether to go home and visit now - or wait a bit. Not an easy question, I know. Just looking for any and all advice, comments, support. Thankyou - Lisa xo
 
Hi Lisa. Sorry to welcome you to our group. There is no real way to know how long someone has but the general guideline seems to be "2 to 5 years." In my dad's case he passed 13 months from diagnosis but we later found out he had symptoms at least a year before and never told any one.

I was able to jump on a plane to be there the day after he was diagnosed but I'm sure having her across the pond makes that challenging and possibly not an option, especially if you want to be there later.
 
It is impossible to say I know someone who has lived without feeding tube, breathing assistance or riluzole for more than 20 years. Others are dead within months. Most are in between. Can you only go once?

I would go soon for quality sister time. Hopefully she will be able to talk and go on outings and you can have fun and make memories

I hope you can go multiple times and she lives a long time. Do you have eyes and ears over there? Do you skype? I encourage you to do so on a regular basis if at all possible
 
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Thankyou all, yes - my other sister is closeby and she'll be keeping me in the loop. She lives in the same town we were born and raised in so she has a lot of love and support there. I think she'll be getting a lot of love and attention in the near term, so I'm thinking i'll reserve my resources for when she needs more; emotionally, physically, whatever. Or just when I think its "time". I can make a couple of trips - depending on the timeline. I have two little girls and a full time job myself - so lots going on. I'd like to bring her and her son over here too. She's only 49.
 
So sorry to hear about your sister's diagnosis.

My husband was diagnosed with Bulbar Onset ALS in Oct '15 but his slurred speech started in July '14. We have been told that his is a slower progression.

We were able to communicate and do more early in the disease. Now his walking is really difficult and he can't speak at all.

As others have said, there is no way to know how anyone will progress. Everyone is different. Some last a few months and some last many many years.

I am glad that my PALS and I decided to do everything we could in the first year. I will cherish those memories forever.
 
Lisa, I think Laurie's idea of Skype or Facetime would be perfect. You would be able to see and talk to her and she can share with you. It will give you both something to look forward to. Welcome and anytime you need support this is the place to be.
 
So sorry to have to welcome you here, but welcome nonetheless.

I agree with others that video conferencing tools like skype can be very effective.

I also encourage you to visit her sooner rather than later (but hopefully both:)). This is a progressive disease, so it is obvious that she will be able to more now than later.

The several months after diagnosis was a real rollercoaster of emotions for me. Being around family really helped. I am sure that your presence there would be very helpful and much appreciated.

Steve
 
thanks steve, i am leaning towards the next couple of months having listened to all of you. best wishes to you
 
I would maybe try for spring. Nicer weather for outings and she gets some time to adjust so she can really be present in your moments. Initially, it's a blur. But Skype frequently either way and let her know early on she can still tell you everything.

Best,
Laurie
 
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