Recent content by hearts_and_thoughts

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    At A Loss of What To Do

    Stephanie, I am sorry also that you are dealing with soooo much. I keep reading posts like this where PALS behaviors remarkably sound so similar to a form of dementia called frontal temporal dementia (FTD) which is nothing like alzheimers or other common dementias. I have mentioned this...
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    New study at UM

    That is quite interesting about that study. My brother was diagnosed in the VA at Ann Arbor and I believe my brother has frontal temporal dementia. He doesn't want any involvement with research now but says that he will allow an autopsy if there is a purpose. We have familial ALS also. I...
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    Hospice on a Vent?

    hospice told me no I didn't see that anyone answered your question about Hospice and a vent. I asked Hospice last night if they take care of patients with a trach and they told me no. I don't know if Hospices are different per company or per state, but mine told me that Hospice is for those...
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    A failed caretaker...

    update Lisa, Some of my "out of state" siblings came to visit and got all the paperwork such as will, POA's, DNR order, Living Will, and got my money back from my brother. They put a contract together that spelled out that I was not "the sacrificial lamb"! It was a whirlwind week but it...
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    numbness

    I have begun to worry, just a twitch...no pun intended...that I may have some form of neuro problem because for years I have had numbness in my extremities (hands, feet, lips, lower face). I used to think it was due to smoking...lack of blood flow caused by smoking. But, I quit for 15 months...
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    tantrums!

    new studies being done I can't say this is even a consideration for your Dad...but I believe my brother has what is now possibly associated with 25-50% of bulbar onset ALS patients. It is called frontal temporal dementia (FTD) and is unlike Alzheimer's symptoms and other "common" dementias...
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    A failed caretaker...

    Lisa, Thanks for your input. I have finally been getting some relief with my brother because the VA has finally paid his full amount (almost anyways) and he can afford to pay others to come in. I finally get to sleep and for the much of the day, I have some time to myself. It makes me...
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    Where to find accessible bathtubs?

    There is also a company called premier bathtubs that has some possible choices for you. We had a rep come to our home to give us a price. Uninstalled this bathtub was to cost 9000. My brother has bulbar onset and still is capable enough to walk in and sit in bathtub. Here is their website...
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    Anyone experience Dementia?

    I came across this transcript in my search for info about ALS and Fronto temporal dimentia. http://www.alsa.org/files/cms/Healthcare/Cognitive_Impairment_Transcript.pdf Of all the literature I read...this one seemed to be the most insightful for me. I hope it can help someone else. Mary Jo
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    Andres is Free

    Thank you for sharing that beautifully written letter. I lit my candle and I cried and prayed. It is so wonderful how he handled his death with such grace and dignity. It is so wonderful that it was peaceful. I am sorry for your great loss and I am glad to hear that your energy is coming...
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    I am inspired

    Yes, I absolutely agree with Cindy (who is a wonderful moderator by the way!) that it is great to have 27 more people in the medical field obtain knowledge about ALS. May God give you insight enough to leave a very memorable impact on your fellow future aspiring medical professionals! Mary Jo...
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    A failed caretaker...

    Sandy, I can't believe how strong you and so many others are that you dealt with caregiving full time for years and years. I've only had the badge since end of July 2007 and I'm a mess. Wow. I can't even fathom where I would be in years to come if I did that. You have my complete admiration...
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    Portable bipap?

    That's a great idea to have one setup in the car like that. Thanks!
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    A failed caretaker...

    Cindy: I agree with you. It's just so hard to "force" him out of my home now that I know that he wasn't in full capacity in making the decisions he has made and having apathy toward my very real and deeply felt losses. I have fought hard for every part of his care and still tried to honor his...
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    bulbar symptoms

    I am sorry about the diagnosis. My brother has bulbar onset ALS. I I'm glad you are here....this forum is the best one I've EVER been on for ANYTHING! The people here are phenomenal and they are all angels. I thank God for them all. Please if you have any questions, at all, don't hesitate...
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