Old 09-27-2018, 05:45 PM #1 (permalink)
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Default Wanted to share my blog.

I don't know if this is acceptable or not here. I just wanted to share with you all that I recently created a blog. It is just a chronicle of my story and my thoughts about life with ALS. I hope to provide some voice for pALS and about pALS. I would be honored for any one of you to stop by and give it a read and some feedback. Thanks for being part of my inspiration. www.standup2als.com
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Old 09-27-2018, 10:14 PM #2 (permalink)
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Default Re: Wanted to share my blog.

Nice blog. Good luck with it.
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Old 09-28-2018, 09:24 AM #3 (permalink)
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Default Re: Wanted to share my blog.

It's very well done. Thanks for sharing your walk. There is much we can identify with. May something beautiful today lift your spirit. B.
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Old 09-28-2018, 09:40 AM #4 (permalink)
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Default Re: Wanted to share my blog.

Love your blog. You sound a lot like my husband Brian and how he views his life with this disease.
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Old 09-28-2018, 11:46 PM #5 (permalink)
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Default Re: Wanted to share my blog.

Thank you folks. I am doing my best to express how it is to live with ALS through our eyes. I know I am not saying anything that is not already being thought by others. I just wanted to have it out there for others to read and share. To maybe help someone who just needs to see that they are not going through this alone. I will also be touching on some issues that we face that may not get addressed as often. I would really like some feedback as to what you all would like to read about. Maybe things you think about but don't feel comfortable bringing up but would like to hear perspectives. I am an open book and welcome suggestions.
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Old 09-30-2018, 09:37 PM #6 (permalink)
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Default Re: Wanted to share my blog.

I find it fascinating when people put their lives on blog. Be honest. Be brave. Your blog is looking good. You're a good writer.
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Old 10-07-2018, 12:06 PM #7 (permalink)
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Default Re: Wanted to share my blog.

I have been enjoying writing it. I do wish I could get a little more interaction on the site but I have noticed on other blogs that there is very little.
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Old 10-08-2018, 08:55 AM #8 (permalink)
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Default Re: Wanted to share my blog.

Blogs are forever, so the interaction is slo-mo. I still get good info and even entertainment from blog posts that are 20 years old.
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Old 10-21-2018, 11:51 PM #9 (permalink)
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Default Re: Wanted to share my blog.

New entry tonight.
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Old 11-03-2018, 09:48 PM #10 (permalink)
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Default Re: Wanted to share my blog.

Just want to thank all who have stopped by the blog. I am generating good traffic from here. I hope y'all are enjoying it.
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Old 11-13-2018, 05:34 PM #11 (permalink)
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Default Re: Wanted to share my blog.

New entry. Thanks for all the support ! https://standup2als.com/what-i-wouldnt-give/
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Old 12-13-2018, 02:25 PM #12 (permalink)
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Default Re: Wanted to share my blog.

Latest Entry. https://standup2als.com/resources/
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Old 12-15-2018, 02:23 PM #13 (permalink)
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Default Re: Wanted to share my blog.

Just checked out (and subscribed to) your blog. Love your tone and the way you capture what its like living with ALS. Sounds very similar to my pALS. Hoping to direct some friends to it so they get an understanding of what we are going through.
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Old 12-16-2018, 01:20 AM #14 (permalink)
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Default Re: Wanted to share my blog.

Gill, I would add the ALS Guardian Angels to the resource list, as well as the MDA, which provides similar assistance as the ALSA at the chapter level,and at the national level, helps fund many ALS centers.

Just a note that many of the resources you mention contain fundraising appeals, that normally we don't allow links to. So if you want to keep posting about your blog links here, please be mindful of that.

Not to hijack, but your characterization of all these orgs raising money as working toward a cure is rather kind -- but I'll stop there as I feel a Rants & Raves coming on.

Best,
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Old 12-16-2018, 03:48 AM #15 (permalink)
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Default Re: Wanted to share my blog.

While we are discussing resources I will comment that ALSA services are determined by chapter. Some chapters are stronger than others. In Massachusetts many get help from CCALS which is private. In the DC Maryland area there is the Brigance Brigade. There are probably other regional/ local groups. It is worth asking around at clinic and support group

Thank you for sharing your blog Gil! It is great you are doing this
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