Old 12-27-2012, 04:27 AM #1 (permalink)
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Default Really bumming.

I am so bummed and just need a shoulder to lean on. My family has checked out on me. My grown boys and my wife just can't take seeing me going down fast. It hasn't been that fast but they never really accepted things could be this bad. They either stay away or won't let me mention anything. I see my wife a handful of hours a week. I feel like a leper and have no help. I can't sleep and just wonder why. I just don't why know no one will help. <sigh>
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Old 12-27-2012, 01:32 PM #2 (permalink)
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Default Re: Really bumming.

Geesh! That is a bummer.

You can always come here for cyber support. Is there an ALS support group in your neck of the woods? If not, an ALS Clinic? If you call there, they can line you up with volunteers to visit with you and help you in any number of ways. I bet they would even meet with your entire family as well- can't hurt to try. If not, can you call on a church minister?

Please, don't let yourself get isolated. We are here! YOU ARE NOT A LEPER!
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Old 12-27-2012, 01:50 PM #3 (permalink)
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Default Re: Really bumming.

is plano in an als chapter? if so is there a local support group or office? support group office could help get volunteers to visit you. i visit regularly with pals that don't attend support group meetings
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Old 12-27-2012, 03:18 PM #4 (permalink)
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Default Re: Really bumming.

Hey Uptown, I am living outside the metroplex and I go to Texas Neurology Associates. They have ALS clinic two to four times a month. I am planning on going to the first meeting in January. Where in Dallas are you getting your treatment? Maybe you could get involved in the clinic. I would love to meet you sometime.
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Old 12-27-2012, 03:37 PM #5 (permalink)
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Default Re: Really bumming.

I'm sorry, but know that you're not alone, as in being the only one this happens to. We've had more than a few members on this forum in similar and even abusive situations. In fact, right now there is another forum member (cukita99) who lives in Texas too, who is struggling with this as well.

This forum is open 24/7, and you can at least feel "normal" and completely un leper-like with us.

If your family would be willing to talk to someone, perhaps the ALS clinic you attend would have some resources to help them better cope with change, and help them to be able to demonstrate that they still love and support you.
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Old 12-27-2012, 05:18 PM #6 (permalink)
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Default Re: Really bumming.

Hi uptown,it really saddens me to read your post and i truely hope your family will come around.
Reading your post reminded me so much of my friend del,he was from seagoville texas.
He had bulbar als but his wife did not help him or want to know,we became good friend emailing several times a day and even though he could not talk i phoned him a few times so he could hear and listen.
I just tried to be there for him the best i could.
He died nearly 4yrs ago but i still miss him,i have a photo.
renee at the als texas chapter used to visit del but there was not alot she could do for him.
Knowing what he went through i have to say to you.......look after yourself,make sure you have all your wishes medically and financially written down or in place.
Whatever happens if you want us we are here,we pull together for each other.......you are not alone.
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Old 12-27-2012, 06:14 PM #7 (permalink)
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Default Re: Really bumming.

Thank you everyone. Nights are becoming a bit more bleak lately and I think that is what gets to me most. Days are wonderful. I seemed to have fallen into a black hole because of a different diagnosis. Even the ALS chapter never returns my calls. I have everything pretty much handled as far as medical, financial, etc. but am now rethinking the hospice thing and getting off of the methadone. I have reduced the dose by about 80% in the past two weeks. Just swallowing is such a chore. Breathing has become much easier now that I have gone a month struggling and relearning the process in a more relaxed way.

I feel like such a whiney baby with all that all of you go through. I am managing things to the best of my abilities but it sure gets tough on some days or tougher some nights. I wake up excited to get another day and I think that is all anyone should really expect. You guys are the greatest!

Ed
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Old 12-27-2012, 09:04 PM #8 (permalink)
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Default Re: Really bumming.

Quote:
Originally Posted by jamiem View Post
Hey Uptown, I am living outside the metroplex and I go to Texas Neurology Associates. They have ALS clinic two to four times a month. I am planning on going to the first meeting in January. Where in Dallas are you getting your treatment? Maybe you could get involved in the clinic. I would love to meet you sometime.
Hi Jamie! I live by Southfork Ranch. I tried going to Texas Neurologists when I was a volunteer Chaplain at Baylor as things started progressing but they would not see me since my "pseudo-ALS" caused by radiation damage to the cervical spine was not really ALS just advanced motor neuron disease. Just stuck in a medical conundrum. My issues are swallowing, breathing and digestion right now. That seems significant to me but nobody knows where to toss the hot potato.

Thank you for the input.
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Old 12-27-2012, 09:53 PM #9 (permalink)
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Default Re: Really bumming.

Please don't feel or be alone...sometimes the ones closest to you have the hardest time but you must let other people help you. There is nothing like human interaction and communication to keep your spirits up. Do you have a church group, old co-workers, neighbors...reach out! Plan for them to come and visit. You are not alone...I am coming on to this site more and more! If you are religious or spiritual just open your heart for peace.
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Old 12-27-2012, 11:44 PM #10 (permalink)
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Default Re: Really bumming.

Ed, we all are struggling in one way or another. Sometimes I wish people would leave me alone, and then I don't want to be alone.
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Old 12-28-2012, 10:57 AM #11 (permalink)
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Default Re: Really bumming.

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Ed, we all are struggling in one way or another. Sometimes I wish people would leave me alone, and then I don't want to be alone.
Very well said Helen. I want to be left alone because the stress of high energy people sometimes causes the heart rate and blood pressure to go up. Other times I am almost scared to be alone. I do get out when I feel up to it and am setting up some home visits with some friends with cancer.

I also found so much useful information here and see that others diagnosed with ALS also battle for breathing assistance, cough assist, etc. it is odd that when I go to the doc they say readings close to normal, worse laying down and do nothing. Last night took a couple tsp of mag citrate and the thick stuff bubbling up all the time did not interfere with my sleep! Thank you everyone for the tips section. I always gain something there. I have little saliva left so have to balance dry with wet all the time.

You guys are incredible. I spent many months on the Oral Cancer Foundation forums after treatment and there is nothing like hearing something from someone that really understands the good, the bad and the ugly of particular issues.

Wishing you and everyone the best possible New Year you can have. Playing the hand dealt is all anyone can do. I shall pray often for all of you.

Ed
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Old 12-29-2012, 10:55 AM #12 (permalink)
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Default Re: Really bumming.

Thank you Helen. You have described it exactly. I don't like when people walk by real fast and say something then yell they can't hear me from the other room. Or that screwed up face as I try to spit out this goo that comes foaming up all the time. Otherwise I am just enjoying another day in paradise. Hugs to you!
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