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1fanatic

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I am just sitting here crying reading all these posts and don't even know where to begin. I thank you all for what you share; deep, personal and informational; your stories are all tragic yet I know that they are helpful to all that read, including myself. My reason for writing (and I am sure there will be more), is that I am looking for some kind of clue/guidance as to what to do. My mom was diagnosed in January (after seeking answers for about 1 year now); and we are officially waiting for the 2nd opinion with the ALS expert on March 8th although all fingers and tests point to ALS. Anyway, I know the progression of this horrible disease is different for everyone but my question/problem is... my mom is one of those internet readers who develops every symptom that she reads but with this disease, I can't tell if she is really experiencing what she says or not. Currently her only "real" symptom is left leg weakness with a drag and lots of tingling and "body shocks." She has experienced shortness of breath or what she says is difficulty breathing although the doctors have all said that her lungs and breathing are FINE. Today she told me that she is having trouble swallowing and gagging. I told her has to take her anti-anxiety medication - that it will help her with her panic attacks. I don't want to diminish what she's feeling, and I know a part of me doesn't want to believe that any of this is real, am I just in denial. What should I do. How do I do this. Maybe I need some Xanax too, I don't know. I can't talk to my friends, I can't talk to my husband. No one knows what it feels like to know that I will be losing my mom a lot sooner than I had expected.

And can I just say that some stupid stranger-hag overheard my daughter talking to her boss about our situation and that stranger said "I hope your family knows or finds Jesus because the next couple of months are going to be helll."

I am sad and didn't know who else to turn to. This seemed like a good idea at the time. Sorry all.
 
Sounds to me like you've already hit the proverbial nail on its proverbial head... She needs to take her anxiety meds. I know the first sign I get of an anxiety attack is the feeling that I can't breathe, and can't get enough oxygen. It's scary. Does she have a particular reason or concern about taking the meds? Maybe if you can get her to address that, it will both help the actual anxiety and get her mind onto something else for a while!? Hang in there.
 
What an aweful thing to say! Not very much of a Chrustian is she? As for your Mom, is there an ALS clinic close to you? If so, go there for guidence. If not, ask an ALS savvy Neurologist to refer to an ALS savvy Physical Therapist, Ocupational Therapist and psyc counsiling. Anti anxiety meds are a good thing.
 
I know from experience that it can be really hard to tell the real from the "in your head." I know I have some hypochondriac tendencies, so when I started having breathing issues I just decided it was anxiety and/or an asthma flareup, and I told myself the occasional drooling, slurred speech, and swallowing issues just had to be psychological because it was just waaaaay to early in the game to have that problem. But I was shocked when I went for the modified barium swallow, and got the label "moderate/severe dysphagia," and then was shocked again when I got a prescription for a BiPAP right off the bat at a first-time appointment with a neurologist since my breathing test scores were so crappy. So you really just never know. I say get her treatments for what she thinks is going on and you'll know pretty quick if it's for real or not... this soft-mechanical diet, thickening liquids, and wearing a mask on your face are definitely not fun. I'm willing to bet that if she doesn't need them, she'll give them up quickly, and things will settle down.

Oh yeah, definitely get that second opinion. I ended up collecting four in all. I guess I have to believe it when four very well known ALS docs tell me that's what I have. Every opinion helped get rid of a little bit of denial and helps move towards acceptance.

And as for the stranger-hag, hate to tell you this, but the world is full of them suckers. I meet one nearly every day. I get perverse pleasure in telling them I'm Jewish, so no Jesus, thank you, and to have a nice day and remember that karma is a really big *****. ;)

Hugs to you and bless you for caring so much for your mom. I can't imagine how hard it must be from the caregiver end, but I do know it takes a very special person to hang in there, take so much crap, and still love, worry about, and care for a loved one.

~ Sarah
 
And as for the stranger-hag, hate to tell you this, but the world is full of them suckers. I meet one nearly every day. I get perverse pleasure in telling them I'm Jewish, so no Jesus, thank you, and to have a nice day and remember that karma is a really big *****.

Sarah, that is priceless!
 
know that you can always turn to this site for info and strength. UC Irvine medical center is an official als center in case you don't already know.
ed
 
Thanks to all and to Ed. I didn't know that about UCI but I'm sure I will figure this all out soon enough. My mom won't really do anything other than internet research until we get out to UCLA in March. I on the other hand am doing all I can for now since I didn't seem to have the selected hearing at the last neurology visit. Ignorance is bliss I suppose. Hugs to everyone.
 
1fanatic, I know of bit of what you're going through and truly feel for you.

I had my Dad to several doctors, including reputable cardiologists and pulmonary specialists over the last 6 months who all found no reason for his "I can't breathe" complaint. All suggested 'deconditioning' and 'anxiety' as answers. Mid January, he visited a pulmonary doctor who said his lungs were "fine" and, if there was a real issue, it must be coronary-related.

A week later, we saw a new cardiologist. Get this, I spoke with the nurse in private and told her that everyone we had seen had said the breathing "issue" was due to 'deconditioning' or 'anxiety' and that if this doctor thought so too, then I wanted an order for pulmonary and physical rehab as well and a psych referral. Yes, I really said that.

Fifteen minutes later, the wonderful cardiologist sent him for a fluoroscopy and it was determined that his lungs were functioning at only 60% of what they should be due to the atrophy of his diaphragm. He made an immediate referral to neurology and made sure we had an appointment the next day. Let me tell you, I felt pretty miserable about being misled by all of those doctors and not believing my Dad. But, I can only do the best I can and I know that you're doing your best as well.

I'm just going to keep learning and keep asking questions. I think this forum is a great 'find'!
 
I am sorry that you have found this website. It means that you have found a lot of dear, sweet souls on the same difficult journey that you may or may not be on. I would discourage internet use until diagnoses is complete. If it is ALS then you can surf to your hearts contents. As you said ALS is not a one size fits all. People get old, get sick and die by the thousands on this old ball of dirt each day. ALS on the other hand is a robber, that steals a little at a time until you die. Unfair, Unfair, Unfair and I did not deserve this! Who said life was fair!
 
One year ago my mom was getting symptoms like her speech was slurred and her right leg and arm started to get weak and she started falling for no reason but wouldn't go in until her dr appoint which was April. She seen a neurologist and he wasn't very helpful she got a throat and speech test done. My mom liked to stretch things so we didn't know how weak she really was or if she was just making something out of a mole hill. But after her results from the speech and swallowing test they said she was a good candidate for choking to death. Then we knew something was definitely wrong, luckily she seen another neurologist and she knew something was wrong and got her to a specialist last Aug and by that time she got worse and was diagnosed w ALS. It was quite the shock. My mom was on antidepressants and they ended up upping them. Good luck on the 2nd opinion! Please keep us updated!

Jessie
 
I am so sorry to hear what you and your mom are going thru. It all takes time, it took 4 years to get my D X, They tried everything else they could to fix me to no avail. Be patient it will be figured out. {{Hugs to both}}

P.S. and that strange hag is just that!..Our Father in heaven is the only judge of any of us.
 
It's normal to start reading about twitching, and then to feel a twitch. Tell your mom to relax, take her meds, and live life! If she keeps reading what's on the internet, she will start having false symptoms of what she reads. If in fact she is diagnosed with ALS, she can't let that slow her down. Be strong for her, encourage her to go outside for a walk or go to the mall.

Good luck!
 
Well, your stranger-hag needs a crash course in evangelism if she really feels she needs to 'lead' your family to Christ. Her approach reminds me of the Crusades, where Jews and others were forced to be baptized or beheaded.

Sarah - I love your comment! My daughter spent 2 yrs in preschool at a Jewish temple and we absolutely loved all the people there. Was recommended by a good friend who is Jewish.

I wish evangelical Christians would evangelize by life style instead of aggressive confrontation. Many of my missionary friends overseas do just that - Spain, Guyana, Peru...why can't we American evangelicals learn by their examples...A famous psychologist said, "no one likes to be told what to do."
 
I can only imagine how hard this is to watch. Second opinions are critical, and an ALS clinic is great! It took them 3 years for a definative diagnosis, but there are a lot of things to eliminate..this disease is a great chameleon. But it can be really slow. Xanax helps fight the terror. I hope you can find someone to talk to, but we are all here for you too!
Good luck...
 
Sorry you had to find our site, but hoping that you'll find the encouragement and hope here that we do.
 
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