Recent content by Isaiah535

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    You can follow our family on our Facebook page called "Flex For Alex" I just posted a video...

    You can follow our family on our Facebook page called "Flex For Alex" I just posted a video about how to make your own healthy food for the PEG tube. Also if anyone is interested in buying a trailer for their power chair please contact me. We are selling ours.
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    Hi! I dont check this page much. Have wondered about you lately too. Do you know about the MDA...

    Hi! I dont check this page much. Have wondered about you lately too. Do you know about the MDA ALS support group in Tulsa. Its the second thursday of every month 6:30-8pm at the center for individuals with phyisical challenges. Hope to see you there some time. Also email me... I left my email...
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    thanks for the website you recommended on the question i asked about getting my husband a trach...

    thanks for the website you recommended on the question i asked about getting my husband a trach. very helpful and informative. sounds way more doable now. i will be bringing this up at his next doctors appointment. thanks!
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    Question about when to get Tracheotomy

    I am in no way making this decision for my husband. He is the one who is more comfortable with it. I'm asking these questions so I can get on the same page as him. The " 24/7 care" is what has been scaring me away from the idea. But I appreciate your comments about the time constraint and...
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    Question about when to get Tracheotomy

    Thanks you all! This was very helpful. Certainly eases my fears and stress about all this. I think I agree now better sooner than later. I don't want to have to do it in a crisis. Scary. His next apointment is in a few weeks I will make sure to talk to them and hopefully they can test his...
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    Question about when to get Tracheotomy

    My husband was diagnosed with bulbar ALS 2 years ago. He has a PEG tube and has lost ability to walk in his own, use his hands and arms and speak clearly. Breathing has been ok. He uses his non invasive ventilator at night. The past week he has been complaining about the settings I. His vent. He...
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    New Wheelchair Ideas and Thoughts

    My husband is getting this power chair soon. The MDA recommended it. They said its the best on the market. Check out this link. Not sure how comfy it is cause he hasn't got it yet but the accessibility and unique way it's made seems like it will make it very convenient and more moble than most...
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    Fun with ALS...

    Lol. Love that you still have a sense of humor! The little 12 year old girl (apparently a dr.) who diagnosed my husband was all teary eyed when she said " its AlS. Its fatal and there is no cure" my husband, though he seriously wasn't joking, just smiled and said " yes there is. His name is...
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    Thanks for writing me back! I was really needing to know someone out there cared today. I...

    Thanks for writing me back! I was really needing to know someone out there cared today. I understand your hobbies aren't as doable these days. But you are still you. Thats what i tell my husband. He's still a singer even though he cant sing right now. You are still a gardener and crafter. Its...
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    Hello Olly! Thanks for friending me. I looked at your family pictures. Looks like a lovely...

    Hello Olly! Thanks for friending me. I looked at your family pictures. Looks like a lovely family. So you were diagnosed in 2007? You are a miracle! So how has your faith helped you get through this? I love to hear others testimonies. Today has been a rough day for me as a caregiver. Its...
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    Hello! Just wondering how you are doing! Hope you are staying positive and strong! Hope to get...

    Hello! Just wondering how you are doing! Hope you are staying positive and strong! Hope to get an email from you soon. Would like to get to know you better. A group of friends are coming over january 26th. Would like it if your family could come. Email me. :)
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    Doctor allow blenderized meals?

    I make my husband's blenderized meals. He is on a organic raw plant based diet. Our dr recommended at first the formula and we said no way. we ask if it was ok he said sure as long as you make sure he's getting enough protein fats and calories. He said many people do their own food. And he...
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    Heres my email if you want. [email protected]

    Heres my email if you want. [email protected]
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    Informing Others

    I know you must be feeling aweful right now. But you are not alone. The last thing you need now is negativity. Once you do share with others be prepared for many well intended "helpful" opinions and suggestions, pity and people throwing all their fears and emotions on you. as if your strong...
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    New diagnosis of ALS

    Re: Boll*?ks My husband was diagnosed around last Christmas. We just wanted to ignore it all and enjoy our precious moments together. You will find this holiday to be sweeter than ever. You will notice the small things and cherish each moment. Its amazing how precious life becomes and how much...
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