Old 09-29-2015, 05:19 PM #1 (permalink)
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A relative has just been diagnosed with als and I am devastated. I don't know how I am going to be able to cope. Is there anyone in the Manchester area who I can talk to? Please help
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Old 09-29-2015, 05:49 PM #2 (permalink)
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Default Re: New diagnosis

You are welcome here and I hope we can provide online support. Browse a bit. Read our stickies read some threads. We do have some Brits here though off the top of my head I don't remember anyone from Manchester or thereabout.
You might have better luck for that on the MNDA forum. But please feel free to post here as well. Sorry about your relative. It is terrible shock I know
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Old 09-29-2015, 06:27 PM #3 (permalink)
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Mel, it's a terrible shock and life becomes a roller coaster. I'm so sorry. Everyone here understands, so please feel free to read and participate.
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Old 09-29-2015, 07:56 PM #4 (permalink)
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We will help you all we can. Just remember, the person is the same, the muscles just don't work. The shock will wear off. We wish you the best.
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Old 09-30-2015, 02:50 PM #5 (permalink)
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Thanks all, sorry I didn't realise this is a US site. My head is a mess right now :'(
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Old 09-30-2015, 03:06 PM #6 (permalink)
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Default Re: New diagnosis

You are completely welcome here. We do have members from all over and the site was actually founded by Canadians. I only mentioned MNDA as you were looking for people physically close to your location

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Old 09-30-2015, 04:02 PM #7 (permalink)
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I guess we have a majority of US folk here, but I'm in Australia and they tolerate me

So sorry to welcome you here xx
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Old 09-30-2015, 05:13 PM #8 (permalink)
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How do you get through this? Until a week ago I didn't know what als was and now it's consumed my whole life
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Old 09-30-2015, 05:33 PM #9 (permalink)
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Default Re: New diagnosis

I think the first few weeks are the worst but it is a difficult path. One day and one challenge at a time. When you are a little more calm read some of our sticky posts. The ones about social security and veterans are US specific but everything else is fairly universal.
People here do understand so consider sharing a bit more. Are you a spouse,child, sibling? Are you the main caregiver? how is your loved one doing physically and psychologically? Do look at the Caregivers section. That tends to be where the carers share the most of their feelings and fears
If you care to you will find friends and support here. There are people who have gone through this and survived, there are current carers as we as those of us who are PALS ( person with ALS)
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Old 10-01-2015, 12:40 AM #10 (permalink)
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Sorry to welcome you here Mel123. I'm one year into my mom's diagnosis. It is a series of stages for sure. This site has provided me with much more information and support than I would have been able to find in another setting. Read away or post away, whatever suits you- this is a great group of people that can help you along.
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Old 10-01-2015, 01:39 AM #11 (permalink)
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Dear Mel,

I am so very sorry for this diagnosis. We all care about you, your relative, and your family. It doesn't matter what part of the world you are from. We all care. People here are from all over, and from what I have discovered, there are a sizable number of people from Great Britain, Australia, and Canada. Everyone here is amazingly caring and supportive. Please remember that you and your family members are not alone.

Sincerely,
Laura.
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Old 10-01-2015, 09:27 AM #12 (permalink)
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Hey Mel
Unfortunate place to meet but I'm glad you found us.
Everyone here is gorgeous. Even though we all speak English, we do discover phrases we've never heard of or understand. I've had to search the meaning of some things!
The love you have for your family member is so obvious. Thank you for caring enough to reach out.
Venting is fine. Tears are fine. Smiles are fine.
This site has a lot of rain but also many rainbows.
God bless, Janelle x
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Old 10-01-2015, 05:41 PM #13 (permalink)
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Wow I'm astounded by all the lovely support on here. Really helps.
The relative is my dad....my best friend and the only man I will ever be able to truly trust, rely on and support me no matter what.
I'll be nothing without him
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Old 10-01-2015, 10:11 PM #14 (permalink)
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Default Re: New diagnosis

Hi Mel, I am not even going to sugar coat this. Being told your loved one has ALS is beyond horrific. It is so heart breaking and your life is forever changed. It will be on your mind day and night. I am so sorry you are losing a father that means so much to you. It is a testament to how wonderful your father is. Take the time you have left with your father and enjoy each precious moment you can. Start early with preparation, get in touch with your local ALS association and join him at clinic. You can't change the diagnosis but you can be there for him and love him with all your heart. Remember that it VERY important to take care of yourself so when he needs you the most you can be there for him and you can make it through. See you doctor and get some help if needed. Reading this forum is the best thing I do each day for myself and my husband. It is truly the one place you can share your feelings and everyone understands. Any questions, fears or support you need is answered here by truly loving people that have or are walking down this road. It is sometimes heart breaking but everyone learns to deal with this tragic disease and the changes to our loved ones. I am so sorry you have to be here. The first few weeks are horrible and you jump from one feeling to the next, you are angry, sad, shocked and scared. You are a wonderful son and even though you feel like you will be nothing without him right now, you will be a different person on the other side of this. I am sure you will be just what your father needs you to be through all of this.
Best wishes and please come here when you need any support There are so many amazing people here who can guide you along the way.
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Old 10-01-2015, 10:21 PM #15 (permalink)
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So sorry Mel. My dad is coming up on a year since his diagnosis. The shock was incredible and we still don't believe it at times I knew nothing about ALS last year other than that the ice bucket challenge was raising money and awareness.

I immersed myself in everything available, this forum, a local support group and tons of books, both clinical and personal stories. My whole life became consumed by this and is now more than ever. Take care of your own mental and physical health along the way. It's so important. Hugs.
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