Old 06-26-2016, 01:58 PM #1 (permalink)
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Default Hi, I am new here

Hi, I am new here but not new to ALS. Just need more support as the ALS progresses in my PALS.
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Old 06-26-2016, 02:22 PM #2 (permalink)
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Default Re: Hi, I am new here

Hi and welcome. You will find tremendous support here. It looks like your PALS has had a slow progression, as has mine. I found a great deal of information here and empathy from people who really understand what you are going through.

Sharon
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Old 06-26-2016, 03:11 PM #3 (permalink)
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Default Re: Hi, I am new here

mgrim can you tell us a little more - your relationship to your PALS and what kind of progression your PALS is in and the care you have to give. That way we can try to be of support. Good on you for joining us now
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Old 06-26-2016, 04:33 PM #4 (permalink)
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Default Re: Hi, I am new here

Welcome. My DH/PALS was dx in 2007 and I just found this thread not long ago myself. The people here are wonderful and a great support.
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Old 06-27-2016, 12:24 AM #5 (permalink)
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Default Re: Hi, I am new here

Welcome here.
I'm so sad that you find yourself needing a site such as this, but the fact you found it for support, encouragement and advice is awesome.
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Old 06-27-2016, 09:41 PM #6 (permalink)
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Default Re: Hi, I am new here

Welcome and know that the support you get here is beautiful.
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Old 06-27-2016, 10:33 PM #7 (permalink)
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Default Re: Hi, I am new here

I just found this forum last week....thank God! Although my PALS (mother) was diagnosed in 2/2015, it is likely her disease first became symptomatic over a year prior to that. While those in our circle of support (albeit a small circle..) try to be compassionate and understanding, they lack the ability to be empathetic. As this is one of those situations where those who are not actively caring for a PALS (or similar debilitating disorder), truly haven't a clue as to the myriad of ways that one's soul can be 'sucked dry' (for lack of a better description). Nor the efforts required at times, to maintain a hopeful, positive attitude despite feeling spiritually depleted. I can honestly say that the responses I received after posting for the first time last week, provided more 'spiritual nourishment' then any and all the support I received prior to that. There is just something so comforting about hearing (..reading) the phrase - "I know exactly what you are saying - and feel the same way you do...". Welcome...I hope that your experience here is as comforting and cathartic as mine has been thus far.....Paul
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Old 06-27-2016, 11:47 PM #8 (permalink)
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Default Re: Hi, I am new here

Paul you have a great way of expressing things!
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Old 06-28-2016, 07:40 PM #9 (permalink)
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Default Re: Hi, I am new here

I take care of my mother-in-law, she has no use of her arms, just dead weight. Two fingers still move a little on right hand. Now her jaw is shaking, she does not seem to be aware of it happening, although she is still in denial at times. Her legs are weak and she can just about do only two steps now. Thank you for all the welcomes and so sorry as to why we are all here.
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Old 06-28-2016, 08:20 PM #10 (permalink)
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Default Re: Hi, I am new here

Paul, I am always tired, it's sucking the life out of me already. I have some help but most of it falls on me. Family doesn't help much, only one of her three daughters do but only after my breakdown. I work full-time and my youngest daughter is unfortunately last right now. My PALS needs me, I am all she has at the moment but I cant take on much more of this disease as it progresses. Horrible disease! Can't get help for care from Medicare, so we pay for adult day care until they wont do it anymore, which is only until 300 pm. I get up early to get her ready and go to bed late to put her to bed, and everything else that needs to be done in between. Yep, I know how it is and this is not even the worst of it yet!
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Old 06-29-2016, 02:42 PM #11 (permalink)
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Default Re: Hi, I am new here

I'm sure by now you have connected with your local ALSA, but if not, please do so. They can help you find more help and connect you with your state's in home supportive services for the elderly. I did a quick search and found this PDF with information.

http://www.ct.gov/agingservices/lib/agingservices/manual/homecareandsupportiveservices/homecareandsupportiveserviceschapter.pdf
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Old 07-04-2016, 01:13 PM #12 (permalink)
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Default Re: Hi, I am new here

ALS has been contacted and so has the Agency on Aging, still no help. Now the only sister-in-law that said she would help backed out of it after only 2 weeks. My meds aren't working too well so I give up. When I am in the hospital again they can figure it out.
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