Old 07-12-2013, 10:51 AM #1 (permalink)
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Question Life is unsure

I have a new journey. On July 9th I was diagnosed with ALS. Since Tuesday I have been delivering this message to my family and friends. I have a terrific partner that has been my "Rock" through the medical process (9 months). Next week we have our first meeting with the ALS clinic. I have fear of my journey ahead, but I have concern for my father as he has already lost 2 children, and for my partner that will be physically and mentally challenged through this journey. Life is so uncertain and I fear the road ahead!
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Old 07-12-2013, 10:59 AM #2 (permalink)
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Default Re: Life is unsure

I know that journey your own and from I've learnt is communication between you and your partner and also your family helps a lot. My wife is my rock and has held my hand throughout my journey. Even tho it's a big deal don't let it change who you are and also never stop smiling.

Good luck
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Old 07-12-2013, 11:14 AM #3 (permalink)
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Default Re: Life is unsure

Hello Ottawa -

I am very sorry you find yourself here! We understand completely all that encompasses such dire news. There is life after diagnosis - really, there is. It took about six weeks for my own "shock fog" to lift and to find a new normal. I too fret about my family and the impact on them.

The Ottawa clinic is absolutely great. Sue, Lorraine, Francine, Heather, Vivian and the rest if the team are unbelievable. Dr. McKim is exceptionally caring as is Dr. B.

Please, if there is anything I can do to help you - do not hesitate. I'd even meet up for coffee ( or a stiff drink!) anytime.
I recommend that you watch " The ABC's of ALS". It's a three part series which you can access on you tube. It's presented in laymens terms and in a sensitive and caring manner. I know myself, family and friends benefited greatly from viewing this early on.

You are not alone.
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Old 07-12-2013, 12:12 PM #4 (permalink)
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Thank you so much for the support and advice. I really need it!

Ottawa girl, I will definitely check out the video and take you up on you offer in the future once I am settled in with the clinic and at home. All so new and overwhelming.
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Old 07-12-2013, 12:44 PM #5 (permalink)
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Default Re: Life is unsure

Welcome to a place where other hurting people in similar situations give each other comfort and ho pe. I am new here as well. My husband was diagnosed with MND on May 16, 2013. I will pray for you as you come to terms with the diagnosis and ask God to give you and your loved ones the grace to go through whatever lies ahead.
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Old 07-12-2013, 02:44 PM #6 (permalink)
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Hello ottawa
Welcome to the forum. This is a great spot to reach out for help and support. I am glad that you are already sharing your very recent diagnosed with friends and family. This will allow you to create a good support system in place for you and your family. Like ottawa girl said, you will meet an awesome team at the clinic. I'm also from in the same city and would be happy to help out in any way I can. Never hesitate...cheers
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Old 07-12-2013, 03:01 PM #7 (permalink)
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Default Re: Life is unsure

Cricket and Ottawa Girl, I know I will have many questions in the near future, if you do not mind sending me your contacts to my inbox.

Thank you so, so much!

Last edited by David : 07-15-2013 at 05:59 PM
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Old 07-12-2013, 06:32 PM #8 (permalink)
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Welcome. I am sorry for your diagnosis but you will find friends and support here.
Best wishes
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Old 07-12-2013, 06:43 PM #9 (permalink)
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Default Re: Life is unsure

@ottawa09072013:

Welcome to the Forums.

Although, I say I am sorry about your diagnosis, I am glad you've found these Forums.
Many good people here, a lot of information, hints, help, etc.
So, don't ever hesitate requesting help or assistance from other Forum members, we are here to help on this journey.

Take care.
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Old 07-30-2013, 02:52 AM #10 (permalink)
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My heart goes out to you. I wish my daddy would join a support group, he is unable to talk about his diagnosis. Although it has only been a week, I long to talk to him about his fears and his hopes for the future. Each of us individually has our own journey, mine right now is to support my fathers journey. I know you also have your own journey. My prayer for you is that your journey brings you enlightment. No matter what our own diagnosis is I believe that the mind is a powerful thing and we will become what we are meant to.
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Old 07-30-2013, 10:03 AM #11 (permalink)
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Welcome to the forum sorry you have to here. But I can tell this for the support and caring form everyone has made my own journey less heavy. I was diagnosed 9/10/12 and I waited for 2 months before I went to a support group. I think I had to come to my own terms first. My first group only had 5 people in it with ALS and 7 caregivers. That made it a more comfy situation. Your group can be a bit of a shock because for the first time you know you are not alone. Seek out you nearest ALS chapter they have been my life line.

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Old 07-30-2013, 08:38 PM #12 (permalink)
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Thank you everyone for your kind words and support. Since my diagnosis, I have been getting lots of support from the ALS clinic, ALS Society and the community; not to mention family and friends

Jamie, I believe everyone processes information differently. As Patrick indicated about himself, your dad may just need time process his diagnosis. I find it very scary and overwhelming. Where as I need to reach out to know I am not alone, your dad needs to internalize. This forum has already been helpful for me and it can be helpful for you.
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Old 08-10-2013, 11:04 PM #13 (permalink)
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Default Re: Life is unsure

As the primary caregiver of my mother who was diagnosed in March of this year, ALS is hard on everyone involved. My first piece of advice is to build your support system. When someone offers help - take it, always. I don't care how silly the task is you give them to do, give them something. This is going to help in multiple ways - but the two ways I've experienced first hand are: 1) it will help you and the caregiver learn to let go of some of those tasks that you were used to doing but time may prevent you from doing in the future, 2) it will ensure that the support group keeps offering to help. The support network that you build want to help you and don't know what else to do. Any little task helps them feel like they are contributing. I had two friends that repeatedly offered to go to the grocery store for me. It wasn't until we ran out of the "staples" of a kitchen that I realized - that easy trip to the store I never took them up on was desperately needed. Now, they alternate weeks. I make the list for us (my mother lives with me) and every Monday they stop by to pick up the list and run to the store. Take up everyone that offers to help by giving them a task! You and your partner will need it!
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