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Rasl30

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Loved one DX
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My brother was diagnosed at the age of 44 (2008).... due to headache and drop foot (w/ associated falls). It took a good 2 years for the diagnosis to come, and when it did, it was PLS, four years later with ALS. I've helped him through a lot as my mother's health failed starting in 2011. He is now nearing the end (maybe) of his journey.... he is no longer "consistently" responsive to questions, and while we had a "plan" in mind a year ago, things change and we'd prefer a firm response... with none to be had (or so it seems).

We got the shock of our lives two weeks ago, when my mother had an EMG (due to cervical spinal damage she was fasciculating)... diagnosis of "motor neuron disease" .... consistent w/ ALS type changes. Then we got the age old "only time will truly tell" statement.
I studied human genetics as an undergrad... I know what this all means.
So beyond that "intimate" association is the fact of dealing with my brother, and mother's care planning, and estate... and dealing with the financial issues that accompany both.... all with the selfishness many people (including my own siblings) possess.
I will say I am a a very low point right now. And all the recent media hype is not helping. I am so angry, and afraid. But mostly angry.
 
I am very sorry. FALS is a nightmare that never stops. You have a lot to deal with practically right now plus the emotional blow of your mom's diagnosis plus very real fear for yourself and other family members
If you have not already read the sticky about FALS for some thoughts on gene testing. If I were you I would try to get my mom or brother tested so you will know what you are dealing with. Don't make a decision about testing yourself until you have had time to work through this. Whatever the results testing is best done from a position of strength not fear. In the meantime remember you have a 50 percent chance of being negative
 
Rasl30 - My heart goes out to you!
 
Rals30, I'm so sad to read your story. It certainly makes our sporadic ALS seem less of a nightmare. Nikki has a lot of experience with FALS and gives great advice--please listen to her.

Selfish siblings--something you should not have to deal with in this situation (or any). You are entitled to low periods, as are we all, but know that we are here for you and will do what we can to give you a safe, supportive place to be.
 
How devastating. I am so very sorry.
 
I am sorry you are having to go through this....we are here for you.
 
Rasl30, your situation is heartbreaking. I'm so sorry. You have so much on your plate. Please bring your anger and frustration here--some (like other FALS) know just what you're going through, some of us (sporadic) can only imagine. Wishing you strength for this journey and a lightened spirit for having come here. You are not alone in this.
 
Thank you everyone.
No one seems to understand the crazy busy-ness of all this. When I look back on my mother's symptoms (confounded with her cervical spinal fusions) it is apparent she is reasonably far in her disease progression... how did I not see the FALLS sooner? She is also dealing with transient "mini" strokes that are affecting her mental abilities (probably *not* related to the ALS, but who knows for sure) -- watching her mental abilities fail is so so hard. I am her primary care-taker, and well, one is always unpleasant to the people who are caring for you. The emotional road is rough.
We celebrated my brother's 50th birthday party this weekend! I think he was quite pleased, I saw some "smiles" (aka, his whole face lighting up). I wish he wasn't so far away (the only facility that will take vented patients under the age of 55 is 3.5 hours away :-(((((
After the party I asked him some hard questions (does he want to go off the vent) but I am still not sure of his response (look this way for YES, look that way for NO), especially based on what we discussed almost a year ago.
This journey is so hard and things are ever changing, what he feels now maybe very very different from what we "discussed" a year ago. I just wish I KNEW. I guess we could all say that. :-(
Thank you for giving me a space to talk and sort things out.
 
Thank you everyone.
No one seems to understand the crazy busy-ness of all this. When I look back on my mother's symptoms (confounded with her cervical spinal fusions) it is apparent she is reasonably far in her disease progression... how did I not see the FALLS sooner? She is also dealing with transient "mini" strokes that are affecting her mental abilities (probably *not* related to the ALS, but who knows for sure) -- watching her mental abilities fail is so so hard. I am her primary care-taker, and well, one is always unpleasant to the people who are caring for you. The emotional road is rough.
We celebrated my brother's 50th birthday party this weekend! I think he was quite pleased, I saw some "smiles" (aka, his whole face lighting up). I wish he wasn't so far away (the only facility that will take vented patients under the age of 55 is 3.5 hours away :-(((((
After the party I asked him some hard questions (does he want to go off the vent) but I am still not sure of his response (look this way for YES, look that way for NO), especially based on what we discussed almost a year ago.
This journey is so hard and things are ever changing, what he feels now maybe very very different from what we "discussed" a year ago. I just wish I KNEW. I guess we could all say that. :-(
Thank you for giving me a space to talk and sort things out.
I am going through the exact same thing with my wife now. She always said she wanted to fight and to live. But did she ever contemplate being on a vent and unable to communicate? Does she really want to be kept alive now? So difficult to get a definitive "yes" or "no". I don't know what to do.
 
I hear you and understand where you are coming from. My husband insists he doesn't want a PEG or vent, but he refuses to sign a living will. It worries me because what if he chokes and needs hospitalisation? If I don't have anything signed, what if the go ahead and vent him? Does not signing mean he is unsure? I just don't know!?
 
This is the hardest subject of all the hard subjects. But it doesn't have to be.

POPPIES, here in the US, if the patient cannot communicate, the doctors will normally listen to the next-of-kin when there is no living will. The law might be different in South Africa, though.

If your PALS changes their minds a lot or doesn't give a coherent answer, I think your best guide is your own self. What would you do if you were the patient?

PALS, as independent, competent adults, are in charge of their own future. And if they haven't provided a coherent and consistent answer, then the duty falls to the next-of-kin. If you honestly don't know what the PALS wants, then put yourself in their place. What would YOU want?
 
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