Old 06-10-2010, 11:08 PM #1 (permalink)
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Default I am new

Hi. I am new to the forum and new to ALS. My partner of 10 months whom I love very much was very recently diagnosed. (within the last 6 weeks) He is very much so in denial. I have been doing much research and trying hard to do what I can for him, but it isn't easy as we are also an hour apart most days due to work constraints. I am not sure what I am looking for here. I guess an insight into our future perhaps? Our road is bound to be difficult regardless of ALS. We each have children from previous marriages. Our relationship is relatively new. But I won't give up. I guess I am just looking for support. Support of people who know. Who understand. Who can help me to understand maybe? I guess he and I are both a bit lost. But I am glad to be here. And I am looking forward to learning more. Thanks.
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Old 06-10-2010, 11:14 PM #2 (permalink)
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I am sorry about your reasons for coming, but welcome.
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Old 06-10-2010, 11:47 PM #3 (permalink)
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welcome you will find friendly and caring people here emotions are high at first very hard to deal with but , we will support and help you
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Old 06-11-2010, 12:26 AM #4 (permalink)
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Default Re: I am new

We cannot tell you, dear friend, what to expect, as all our paths are different. But in general, you must unfortunately be aware that your partner's independence will gradually be taken away from him. But it may take years and years and look at us!all bright and perky
This must have been such a devastating blow for you, but it is a new adventure. You are both going to learn things you would never have had the chance to learn, experience highs and lows of emotion that "ordinary" people can never know. It becomes a hard journey often enough but because you have come here you will be supported on every side. The important thing is to be practical . Look at what is going wrong, imagine it worse and then prepare for it. He stumbles? Get a rollator. evERYTHING in good time before the need is vital. It gives time to accustomise and cuts down any dangers;
I hope you find a way of being closer. Does our partner have others nearby who can help him physicall.? Tell us more so that we can weigh in with all our good advice, over which we shall then doubt argue, like any normal family
Much love coming your way
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Old 06-11-2010, 12:55 AM #5 (permalink)
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Welcome to the forum! Sorry you have to be here.

Give yourself time for everything to settle in. We are here to support you however we can. Let us know what you need and ask any questions you want.
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Old 06-11-2010, 08:22 PM #6 (permalink)
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Hi Andie. Welcome but sorry you need to be here. Has your friend registered with the ALS Society of Ont? They have information, support and an equipment loan pool. They are at ALS Society of Ontario You will find them very helpful.

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Old 06-11-2010, 08:54 PM #7 (permalink)
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It takes time for things to sink in. Eventually there will be a new "life."

Welcome.
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Old 06-12-2010, 12:24 AM #8 (permalink)
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Hello, dear. My piece of advice is to notify MDA. They have several books that are wonderful. They are spiral bound information books for the PALS (person with ALS) and one for the caregiver. For me, that information early on was priceless. MDA (Muscular Dystrophy Association) can be a world of help.

Please come back and check in often. There are many great people who visit the forum that will surely be marvelous help. Take care of yourself!
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Old 06-12-2010, 02:02 AM #9 (permalink)
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Hi Andie i too am relatively new to the forum but not to ALS ... the fact that your already reaching out is great , and you will find that there is plenty of practical and emotional support available ... your partners denial is a way of coping he will face it when hes ready be patient and just research as much as you can ... but remember practical books dont take into account the human spirit and thats what sees us through ... if you wish to request my friendship i would be happy to be your friend ... im 48 and i have children from my partners and my previous marriage.. thinkinking of you karen
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Old 06-12-2010, 10:57 AM #10 (permalink)
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Hi, so glad that you have found this forum.....we welcome you into our family.. We will be here to give you support and understanding.... Sorry that this has come into your lives,but just know ,you are not alone...hugs, Linda
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Old 06-13-2010, 07:20 PM #11 (permalink)
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im so deeply sorry to here the news .als sucks .i hope nobody got offended by that but we are a loving family dealing with issues as you and were all here to help.give it time like brooksea said .i remember when i was told i had als .right then i refused to believe it ,because it is such a horrible shock and scary.the denial went away after about a month .give him time this is hard to cope with for both you .your at the right place god bless jeffp
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Old 06-13-2010, 09:15 PM #12 (permalink)
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Default Re: I am new

Andie - I, too, am fairly new to the forum. My mom was diagnosed with ALS Sept 2009. I came to the forum looking for exactly the same thing you are: some type of answers to my questions and lots of support. I have found that sometimes there are no answers to the questions, but this forum has given me a lot of the support that I have needed. I highly recommend the MDA/ALS website. They have lots of reference materials that are free that will really help. I actually downloaded them and had them printed for me and my dad.

There is a television show on tomorrow (June 14) on the Golf Channel about a golf caddy. I posted it under events and announcements. If you have access to that channel, you may want to watch it. The caddy had ALS and it's his story. I plan to watch it.

Take care, and peace be with you,
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Old 06-13-2010, 09:27 PM #13 (permalink)
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Welcome Andie, I am glad you found the forum, but sorry that about the circumstances that led to you finding us. If you havent already, please make contact with the ALS society of Canada, and your provincial affliate. This organziation has a wonderful selcetion on information and they have a great handbook, which would be a benift for you and your partner to read. The literature can either be downloaded or they will send it to you once you register and here in NB there wasnt a fee. They are a wonderful source of information, as is this forum.
Welcome and please know you will be supported here as you embark on this journey
Susan
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Old 06-14-2010, 06:03 PM #14 (permalink)
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Hi Andie, welcome to our family forum. So sorry you had to find your way here though. You are in the "Walking Zombie" stage as I call it. It is just so very overwhelming to get the diagnosis. My father has it. In time, like brooksea said, a new life (stage) will begin and you will settle in to living with the disease. If you have any questions, or just need some support, we are all here for ya!
Hugs, Blubear
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