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ottawa09072013

Active member
Joined
Jul 9, 2013
Messages
37
Reason
PALS
Diagnosis
07/2013
Country
CA
State
Ontario
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!
 

Mndsuffer27

Member
Joined
Jan 20, 2012
Messages
27
Reason
PALS
Diagnosis
06/2010
Country
Aus
State
Wa
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
 

ottawa girl

Very helpful member
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
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.
 

ottawa09072013

Active member
Joined
Jul 9, 2013
Messages
37
Reason
PALS
Diagnosis
07/2013
Country
CA
State
Ontario
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.
 

CaringWife

Member
Joined
Jul 8, 2013
Messages
24
Diagnosis
09/2010
Country
US
State
OR
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.
Ellen
 

Cricket

Distinguished member
Joined
Feb 10, 2013
Messages
166
Reason
PALS
Diagnosis
07/2011
Country
CA
State
ON
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
 

ottawa09072013

Active member
Joined
Jul 9, 2013
Messages
37
Reason
PALS
Diagnosis
07/2013
Country
CA
State
Ontario
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 a moderator:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,365
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Welcome. I am sorry for your diagnosis but you will find friends and support here.
Best wishes
Nikki
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
831
Reason
PALS
Diagnosis
12/2011
Country
US
State
Maryland
@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.
 

Jamiekay

New member
Joined
Jul 27, 2013
Messages
8
Reason
Loved one DX
Country
US
State
Washington
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.
 

patrick123

Distinguished member
Joined
Oct 4, 2012
Messages
433
Reason
PALS
Diagnosis
09/2012
Country
US
State
co
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.

Patrick
 

ottawa09072013

Active member
Joined
Jul 9, 2013
Messages
37
Reason
PALS
Diagnosis
07/2013
Country
CA
State
Ontario
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.
 

Tasimon25

New member
Joined
Aug 1, 2013
Messages
3
Reason
CALS
Diagnosis
02/2013
Country
US
State
MO
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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