Status
Not open for further replies.
Thank you to all for your comments. The clinic visit was truly a rollercoaster ride. I agree that we are so lucky to have such multidisciplinary clinics to frequent, and help us with our needs. I was not really ready to hear some of the things they had to tell me. Other things made me happy and were reassuring. Due to my recumbent MIP, they want me to go on BiPap. My seated and standing values were all ok. I am having a hard time digesting this. They told me it would help preserve my diaphragm, and hopefully not progress as fast. Since my onset has been Bulbar, most of my problems are of course in my speech, swallowing, chewing etc as I mentioned in earlier post. I think since I have no limb symptoms, I was expecting them to tell me I really didn't need to be there yet. I know this was an unrealistic expectation, but I am an eternal optimist most of the time. I am not normally a crybaby either, but anytime I watch any of the videos and continue to educate myself, I just boo hoo until I can't hardly breathe. It is not inappropriate timing, but it feels so close to the deep grief I have felt when I lost each of my sons in auto accidents. Have you felt this gut wrenching also? It has been a month since my DX, and I'm just not reacting like I would think. I guess I haven't accepted it yet. My questions besides the serious grief feeling are: Anyone on Riluzole? Comments about it? How about Thick IT. They recomended some kind of thickening agent too. Thanks in advance
 
My husband is limb onset, so I can't weigh in on your current symptoms, but I can speak about the grief. You know, the kind that starts with a silent scream deep in the pit of your body and slowly squeezes your insides to the point that you couldn't take a breath if you tried. About the time you think your brain will burst -- you inhale. At least I can, but then I'm a CALS, not a PALS. I can't even imagine the pain of losing both of my sons (it sounds like in two different accidents? Oh my God)--let alone facing this afterwards. Yes, the grief is normal and you won't get over it any time soon--if ever. It's only been a month--you haven't even begun to process this fully. This is a terrible roller coaster that you've boarded, and I don't think ANY of us is prepared for it. Daily it challenges everything I thought I knew about both my husband and me. It's been nine months for us; I could have given birth in this time, but I still haven't found complete acceptance. Sometimes I think I have, but that's just a cruel trick. Cry, rant, grieve--we will be here with you.
 
Thank you for the reassurance that not enough time has passed. Sorry to have asked questions I may be able to find on other threads. I'm new to forums, so a little ignorant of the rules and regs.
 
I know that feeling of half expecting to be told you don't belong in clinic. I felt it too.
I am limb onset but we used thickit with my mom. It did help somewhat for a while.
I take riluzole and encourage you to try it. It took 3 weeks for my stomach to settle but it is fine now. Since being on it my twitching is virtually gone and I have not really progressed ( it has been a few months so early days but right before it I had started to progress quickly)

Neil mentioned Nuedexta. It helps some people with swallowing but insurance usually only covers it if you have emotional lability but if you can get it worth a try. My sister said if she could only take one pill nuedexta would be it.

It must have been hard to be recommended bipap but early bipap is supposed to be beneficial. Research the diaphragmatic pacemaker ( dps) there is a window of opportunity before your diaphragm is too weak so don't wait to decide in case it is something you want

Sorry to throw that at you but I know several people missed their opportunity because their diaphragm weakened early
 
Welcome to Heartbreak Hotel.

I am bulbar, too, and the first Dr. order was bipap. A really knowledgeable guy set it up initially, and from the first night I have slept better than in years, and wake up refreshed. When I switched to VA, they got it all wrong with too much pressure, so Laurie advised me and helped me adjust it myself.

Per third party observations, Riluzole really helps slow the decline. I've been on it since diagnosed.

I cry at anything that evokes emotions - even good news. I'm trying to get Nuedexta, which should help.

I was advised to get a PEG tube before I got any weaker. It was a good call. I have been on the tube six months now and don't swallow anything but pills and a tiny amount of water chaser. Aspirating can lead to fatal pneumonia, and I don't want to go for a long time yet.

I've learned I don't have to look very far to find somebody I wouldn't trade troubles with.

GB
 
You've come to the right place. We may have different types of ALS and are being affected in different ways but we are all in the same boat. This forum is the one, perhaps only, place where people know what you are going through and feeling.
You will find support, encouragement, be able to ask questions, access information, cry, vent, whatever you need to do.
I was diagnosed two weeks ago. It was a rough road to get to acceptance.
My brother had bulbar onset. I took care of him. I never thought that I would get ALS as well.
It puts me in a unique situation, both a blessing and a curse.
My neurologist told me that I have a "weird presentation". Huh? He wants to do another EMG. He has referred me to an ALS specialist at the Univ. of So. Florida. It takes a long time to get in.
I started with severe muscle atrophy,weakness and curling fingers in the right hand. I also have exaggerated reflexes and roaming muscle twitching.
At least now that they aren't trying to find the impingement in the ulnar nerve that they thought was causing the problem with the right hand they are finally going to do something for my lower back! Before I was told that "no one dies of back pain". I've been dragging my right leg since mid-March.
I have to wonder how much of the weakness in the leg is from the back and how much is from the ALS. I'll find out after the procedure on the back on 11/25.
You can apply for Social Security Disability. ALS is the only disease that is granted automatic approval, no hassles.
If you don't already have a will, living will and durable power of attorney for medical and financial I highly recommend that you take care of that soon. As a nurse you know the importance of the living will and medical POA.
I am also going to get a DNR. My husband and I have talked about my end-of-life wishes. He know that I do not want to be put on a ventilator.
It is a lot to try to take in. Take one day at a time. Don't make yourself sick thinking and worrying about the future. There have been a lot of advances in the treatment of ALS. Don't lose hope.
I am going to live as normal a life as possible for as long as possible. I am going to fight every inch of the way and not give in.
Women are tough cookies and tough cookies don't crumble!
 
>Women are tough cookies and tough cookies don't crumble!

= Sandy :)
 
I just received the MRI report from 3 wks ago. The Neuro said that it looked pretty good, but had gliosis present. He also said this would not be causing my bulbar symptoms, but is present due to the MND. I understand that, but am wondering if many of you have had similar MRI reports. Does this happen in the early stages, or in the more advanced? I have read many articles from reliable sources on the net, but need to hear from real people in my shoes. Still trying to remain positive, but my speech seems to be deteriorating even more.:(
 
Tawill, so sorry to meet you here. You said you wanted to hear from people in your shoes, so here goes! My husband has bulbar onset ALS, too, diagnosed back in Feb of 2012. I have to tell you, this gliosis you have is the first time I have ever heard of it! I had to google it to see what it was. So can't help you with that! But Tom has been on Riluzole since the first day he was diagnosed. He has had no ill effects and who knows - maybe it has helped his slow progression! His speech was the first thing to go, about a year after diagnosis. He uses notepads, an iPad, and a boogie board to communicate. His social life is on the Internet - Facebook, Linkedin, texting, and emails. Ironically he won't come on here (he keeps his "head in the sand")! The next thing to go was eating but fortunately he had a PEG tube put in early (6 months after diagnosis to initially use for his meds). So he has never lost much weight - very important to slow progression. Now he is having a lot of problems with saliva - Botox shots every month to alleviate this. And phlegm is also a big problem, he uses a suction machine and cough assist for this. He's on various prescriptions for the saliva and phlegm problems , too. Oh - and because of CO2 buildup he uses a biPap machine about two hours a day. Every day brings new experiences, we just tackle them head on. So not trying to scare you but as Max says - it is what it is! And on the bright side - Tom is still totally independent; drives (with a neck brace), mows the lawn on our tractor, does all his own tube feedings and meds, needs minimal assistance with dressing, and he still golfs! So hang in there, let's pray you have the same slow progression! God bless !
 
Status
Not open for further replies.
Back
Top