Old 07-16-2009, 11:10 PM #1
matthewdbardsley matthewdbardsley is offline
New Member
 
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
matthewdbardsley matthewdbardsley is offline
New Member
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
Unhappy Mixed Signals

Hi Everyone,

I have been creeping this forum for nearly a month now, reading through all the threads throughout the site trying to learn as much as I can about ALS/MND. My father is currently in the intensive care unit, being supported by a ventilator. We have been hopping back and forth between a diagnosis of ALS and MG. We have been through five different neurologists and have been getting differing opinions throughout his 2 month stay in the ICU.

I will give some historical details to provide a clearer picture... Around December 2008 he began having difficulty swallowing and speaking. The symptoms were manageable and tended to come and go. Things remained like this for a while and I didn't really think much of it. In April 2009 we went on a trip to Toronto/Montreal and i noticed had almost completely lost the ability to hold his head up, and his speaking had become much worse. He began complaining of seeing double and having other vision problems. He used to be an avid "city walker" and loved walking for many KMs throughout different cities we were visiting. This trip he wasn't able to go more than 2 city blocks without having to get into a taxi and head back to the hotel. I had noticed that these symptoms were improving with rest. Things began to rapidly deteriorate about a week after returning from vacation. To hold his head up he had to have it propped up with both hands. His speech had become extremely difficult to understand... It seemed to be one long slur most of the time. During all of this we were waiting for a neurology appt. which had come with an 8 week waiting period. By mid-may, he was no longer sleeping through the night and could barely eat or speak. One morning, he was almost totally unable to make it up a flight of stairs and became increasingly confused. He had begun hallucinating and was appearing to have problems breathing. We headed to the hospital and he was admitted immediately as he was in the midst of respiratory failure.

We were faced with the difficult choice of intubation... We were told that if ALS was what he might have, then intubation would have been permanent. But if it was MG or another treatable condition we could expect to see the breathing tube removed. We had about 25 minutes to make this choice before it would have been too late...

After being intubated he was almost immediately started on Mestinon as well as prednisone to help his respiratory recovery, and over the course of about 3 and a half weeks was given larger and larger doses. We immediately saw imrovements. He could hold his head up again, and after the intubation was brought to a tracheotomy we noticed that his speech has begun returning as well. He eventually was able to speak with little slurring and more air behind his words when he had his "speak valve" on. His swallowing abilities also seemed to return (we were in the midst of testing them with different fluids and foods). Four different neuros consulted all were of the opinion that it was a myasthenic crisis which brought us into the ICU and that the subtype of myasthenia he had often required 100+ day stays in an ICU setting to wean from the ventilator and make a recovery.

Things seemed to be improving at a slow but noticeable pace.

On Monday, a new doctor began ICU rotation and said that since admission, little progress has been made. He has totally stopped the mestinon and brought in a new neurologist who has said that MG is on the bottom of his list of possible diagnoses and that ALS is more likely. Today, 2 days after the last dose of mestinon, his speech is again very difficult to understand and he is again slumped over unable to hold up his head and is again having a lot of trouble breathing. Blood samples sent out showed negative for both of the possible tests for MG. We had initially been told that there is a percentage of MG patients who show negative to both of these tests.

Upon admission to the hospital, my Dad was almost immobile. He couldnt go more than 10 or 20 meters without getting absolutely winded and having to sit down for about 20 minutes to recover. Throughout his stay in ICU he has been having daily physiotherapy and has apparently made great progress. He started out 9 days after being admitted being able to march 15 or 20 steps on the spot before having to get back into his bed for the day. Friday (nearly 2 months later), he was able to ride an exercise bike in the rehab center of the hospital for almost 13 minutes, as well as taking two seperate 200meter walks. Also, when we were admitted he was obviously on life support 24/7. Now his trach. is taking in "room air" and he is breathing without support for 16 hrs a day, being rested at night back on the ventilator on minimal settings.

I am getting so many different answers from so many different doctors. Some have actually straight up said "the only thing i can completely rule out is ALS" and now I am hearing that it is actually the likely diagnosis.

My main questions are: Is it possible for a recovery like i have described to occur if it was ALS? The current DR says that because of how bad my Dad came in, what we may be seeing is just the results of some extra fluid and oxygen. My understanding of ALS was that it was impossible to make improvements... I would have thought that once on the ventilator he would be unable to wean off to 16 hrs a day. It had seemed to me, and many other nurses and Drs that he was, albeit extremely slowly, getting stronger and better. Do ALS patients experience this sort of improvement? Does Mestinon produce lasting, significant improvement in ALS patients? No one can give me any sort of honest, clear answer at the hospital.

AM I being unrealistic? Am I in denial? I am so confused and exhausted. I know that I am not the patient here, but the course of this all has really drained me. The ups and downs of the ICU are taking a toll. I hope that I can get some answers soon.


Thank you in advance for any and all input you can give me. I think it is so amazing that so many of you seem to be able to keep a positive outlook throughout this stressful, oftentimes discouraging journey.

Matthew
matthewdbardsley is offline  
Old 07-16-2009, 11:22 PM #2
joelc's Avatar
joelc joelc is offline
Moderator
Forum Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,787
joelc is on a very distinguished road
joelc joelc is offline
Moderator
Forum Moderator

joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,787
joelc is on a very distinguished road
Default

No, if it was ALS there is not a chance you would see this kind of improvement. I think you can safely rule out ALS.

I would be looking for different doctors who will search for what is really going on. I hope you can find some answers with a happy ending.
joelc is offline  
Old 07-16-2009, 11:42 PM #3
GlenBrittle's Avatar
GlenBrittle GlenBrittle is offline
Very Helpful Member
 
Join Date: 2008
City: Alexandria
State: Ontario
Country: CA
Diagnosed: 10/2008
Interest: I have been diagnosed with ALS.
Posts: 1,530
GlenBrittle is on a distinguished road
GlenBrittle GlenBrittle is offline
Very Helpful Member
GlenBrittle's Avatar
Join Date: 2008
City: Alexandria
State: Ontario
Country: CA
Diagnosed: 10/2008
Interest: I have been diagnosed with ALS.
Posts: 1,530
GlenBrittle is on a distinguished road
Default

Hi Matthew,

Welcome to the site. It is sad that you have come here with such awful issues happening to your Dad.

First , let me say that ALS patients never improve. They may hold their own , not declining further , but never get better .

It sounds like he was just so sick , that those symptoms were overshadowing any sort of diagnosis. I am happy to read that he getting stronger and able to move around a bit.
I think I would wait for a bit longer before trying to see what else is wrong.

I did not see any references to MRI's or EMG tests .

Is it possible that most of the symptoms could be attributed just to pure exhaustion ?

Wishing your the best possible recovery.

Glen
GlenBrittle is offline  
Old 07-17-2009, 12:36 AM #4
matthewdbardsley matthewdbardsley is offline
New Member
 
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
matthewdbardsley matthewdbardsley is offline
New Member
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
Default

Thanks for your replies, guys.

Several EMG studies were performed throughout the stay in the hospital. First two were inconclusive, not giving a clear diagnosis either way, a third I think slightly supported a diagnosis of MG. The fourth, most recently done on his diaphragmatic muscles, didn't seem to show anything either way... the neurologist said "yep, the muscles are definitely misbehaving" and walked out of the room.

We have had several CT scans done, checking for problems with the lungs which were preventing full recovery of respiratory muscles as well as ones checking in the neck and head. An MRI is out of the question because he has a piece of metal shrapnel in his chest from 40 years ago. It was a war injury and the Drs at the time decided it was safer to leave it in there instead of attempting to cut it out.

We have been presented with so many inconclusive pieces of evidence for both diagnosis'...
I think the Drs are unable to explain the improvements made in walking, speech and swallowing, his neck... It just seems like the overall direction of the discussions during daily rounds is towards this no longer being a myasthenic crisis to being a MND. I dont know what information could be supporting this ? Nor do we have an explanation for the gradual improving...

Is there parts of the brain shown during an MRI which would lead a Dr to diagnose ALS?
matthewdbardsley is offline  
Old 07-17-2009, 01:40 AM #5
hopealive's Avatar
hopealive hopealive is offline
New Member
 
Join Date: 2006
City: Albany
State: OR
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 93
hopealive is on a distinguished road
hopealive hopealive is offline
New Member
hopealive's Avatar
Join Date: 2006
City: Albany
State: OR
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 93
hopealive is on a distinguished road
Default

As far as I understand it a clean MRI is just one more indicator that it could be ALS. I know in MS lesions show up on the brain, sometimes.
hopealive is offline  
Old 07-17-2009, 06:50 AM #6
lydia's Avatar
lydia lydia is offline
Senior Member
 
Join Date: 2007
City: buffalo
State: ny
Country: US
Interest: I hope I am NOT in the process of being diagnosed
Posts: 677
lydia is on a distinguished road
lydia lydia is offline
Senior Member
lydia's Avatar
Join Date: 2007
City: buffalo
State: ny
Country: US
Interest: I hope I am NOT in the process of being diagnosed
Posts: 677
lydia is on a distinguished road
Default

Matthew,

I am so sorry to read what you are going through with your father; especially the latest doctor. But if he was improving while on the mestinon and while off it is not, I would push to have that reinstated, firm MG diagnosis or not. If a MG crisis can turn into a 100+ Hospital stay, he was only in for 2/3s of that time before this new doctor stirred things up. Certainly a 100 day stay implies slow progress, not rapid! And I would fight them on the suggestion of ALS; it is hard to believe with the state that he was in, that there would not be irrefutable EMG evidence clearly pointing toward ALS (beyond describing as "misbehaving muscles"). Did you see the EMG report, perhaps the doctor bothered to write in more technical language? Have you gone to any of the MG forums to read of experiences with MG crises? What happened to the other doctors, and what about their thoughts on this? This sounds so frustrating and frightening, please post what happens, and good luck.

Lydia
lydia is offline  
Old 07-17-2009, 11:57 AM #7
matthewdbardsley matthewdbardsley is offline
New Member
 
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
matthewdbardsley matthewdbardsley is offline
New Member
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
Default

Hi again. Thanks for all the replies. I didnt expect to get this many so quickly. It is nice to know that throughout the world there are people who are willing to share their insights and information.

Just returned to work from visiting my Dad at the hospital. He can no longer hold his head up without it being propped on one or both hands. When I asked him if he could hold it up at all, he said he could but "really needed to concentrate on it", and even then could only go about 5 or 10 seconds. His speech has returned to the way it was when he was admitted to the ICU. This is all after 3 days off the mestinon.

Despite these signs the Drs are still pressing forward with a likely ALS diagnosis. They are doing muscle biopsies today, as well as a spinal tap to rule out other inflamatory processes that could be interfering with muscle control and strength. It seems like all of these are being done half heartedly, a nurse today asked if I had looked into home care options...

Part of the problem is lack of communication with any of the neuros or even the intensivist DRs who supervise the ICU. They are all on a rotation system that has them switching out with different Drs... So each week there is a new "team" of specialists, each with a different opinion and approach . I asked for him to be put back onto the mestinon because he had seemed to be getting some restorative benefits from it but my request was flat out refused. The nurse said "I'm going to be honest. He isnt going back on that drug. It is an expensive drug and he has tested negative for myasthenia. We arent going to be medicating a condition that doesnt exist". I asked her if she also saw the deteriorating speech, swallowing and neck strength and she reluctantly agreed but still said mestinon was no longer an option.

Am I missing something? Why is everyone so sure it is ALS when there has been improvements? I dont know what to do. My Dad has repeatedly asked "what is wrong with me? Why am I still here?" and I am debating telling him that his diagnosis appears to be changing... There is no one that will speak to me at the hospital for more than 30 seconds at a time, and I feel like I am being "managed" instead of actually having an honest, informative conversation with any health care professionals...

Hope everyone is doing well out there on the forum.
matthewdbardsley is offline  
Old 07-17-2009, 12:02 PM #8
matthewdbardsley matthewdbardsley is offline
New Member
 
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
matthewdbardsley matthewdbardsley is offline
New Member
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
Default

I think that the improvment and corresponding declines I have been seeing in the hospital are more "wishful thinking" than real, tangible progress... While I think it is definately possible I also feel like some of the progress has been undeniable. The week before going into the hospital, he spent a good part of each day sitting on a couch with his head propped on a table at about the level of his legs.... For about a month in the ICU he was able to hold it up for long periods of time... to play cards, checkers, watch a movie...
matthewdbardsley is offline  
Old 07-17-2009, 12:09 PM #9
miss91 miss91 is offline
New Member
 
Join Date: 2009
City: A City
State: A State
Country: US
Interest: Frightening symptoms
Posts: 61
miss91 is on a distinguished road
miss91 miss91 is offline
New Member
Join Date: 2009
City: A City
State: A State
Country: US
Interest: Frightening symptoms
Posts: 61
miss91 is on a distinguished road
Default

What is wrong with these doctors? If he was getting relief from the meds, why not let him continue with them? Is it really all about the money? From what I've read on here, it also seems like the medical profession is very against trach/venting....is this also all about the money? How horrible that someone's life is less valuable than the money involved.
I wonder if the doctors would consider ONE MORE TRY of the medication. Maybe they'd be willing to try it, and you could be willing to say "enough" if there is no improvement. Either way, I'm so sorry for what you are going through, and I surely hope that they will give it another shot.
miss91 is offline  
Old 07-17-2009, 12:29 PM #10
brooksea brooksea is offline
Extremely Helpful Member
 
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
brooksea brooksea is offline
Extremely Helpful Member
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
Default

Sounds like you will need to advocate for your dad by going above these doctors and nurses heads. If there was real improvement on the Mestinon, then I would approach the Chief of Staff or someone with oversight about their exact reasons for withdrawal of medicine and all test results pointing away from diagnosed of MG and pointing towards ALS. You may have to get pushy! Just remember, these people are supposed to be there to serve the sick and are not gods, so don't let them "manage" you.

I hope your dad will be able to get the help he needs. Good luck to you both!
brooksea is offline  
Old 07-17-2009, 12:53 PM #11
Zaphoon's Avatar
Zaphoon Zaphoon is offline
Extremely Helpful Member
 
Join Date: 2008
City: Springfield
State: Missouri
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with UMND/PLS.
Posts: 2,855
Zaphoon is on a distinguished road
Zaphoon Zaphoon is offline
Extremely Helpful Member
Zaphoon's Avatar
Join Date: 2008
City: Springfield
State: Missouri
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with UMND/PLS.
Posts: 2,855
Zaphoon is on a distinguished road
Default

I'd be really interested in what the results of the spinal tap are. Have the doctors said anything about Primary Progressive Multiple Sclerosis? It is a form of MS that is very progressive, would most likely not show up on a brain MRI and would respond to treatment (as long as it continued).

It just seems that a lot of what your Dad is experiencing lines up with PPMS. Have the doctors bothered to bring in a rheumatologist?

Zaphoon
Zaphoon is offline  
Old 07-17-2009, 12:55 PM #12
matthewdbardsley matthewdbardsley is offline
New Member
 
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
matthewdbardsley matthewdbardsley is offline
New Member
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
Default

I have been trying to get this question answered since the begining of all this... No docs will give a clear answer.

Can a person afflicted with ALS ever recover from respiratory failure and be weaned from the ventilator? If we are looking at an ALS diag. with my father, is the vent going to be permament?

I had understood that someone with ALS who was in the midst of respiratory failure would most likely not be able to be walking himself into the hospital like my dad did?

Does someone with ALS ever experience improvments when given Mestinon? Does mestinon have any sort of effect on ALS?

Thank you again for all your support and answers, it is really helping me in this tough time.
matthewdbardsley is offline  
Old 07-17-2009, 01:35 PM #13
brooksea brooksea is offline
Extremely Helpful Member
 
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
brooksea brooksea is offline
Extremely Helpful Member
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,172
brooksea is on a very distinguished road
Default

matthew,

Mestinon does not improve ALS. Sadly, there is nothing to date that will. As I understand it Mestinon helps the nerve signals to the muscles in people with MG. With ALS the motor neurons are lost.

From what I've read, some pALS that did take Mestinon (mis-diagnosed with MG) reported symptoms of ALS worsened.

I don't know of any pALS coming off a vent.

Perhaps someone more knowledgeable on this forum will be able to answer your questions in depth.
brooksea is offline  
Old 07-17-2009, 01:48 PM #14
BethU's Avatar
BethU BethU is offline
Extremely Helpful Member
 
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,644
BethU is on a distinguished road
BethU BethU is offline
Extremely Helpful Member
BethU's Avatar
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,644
BethU is on a distinguished road
Default

Matthew ... your dad's situation is tragic. I can't believe that any doctor would take a patient off a med that was clearly benefitting him.

The nurse said "I'm going to be honest. He isnt going back on that drug. It is an expensive drug and he has tested negative for myasthenia. We arent going to be medicating a condition that doesnt exist". I asked her if she also saw the deteriorating speech, swallowing and neck strength and she reluctantly agreed but still said mestinon was no longer an option.

I went back and forth through the MG/ALS confusion, and everything I read about MG (online only, but mostly "legit" sources) said that 5 to 10% of MG cases cannot be diagnosed through blood tests. They are diagnosed on clinical exam only. The fact that your father had such a good response to the mestinon with no side effects sounds extremely convincing. Even if they want to label it ALS, they should keep giving him the medication that helped.

I also had a good response to mestinon, but with unpleasant side effects. When I talked to the neuro who first decided to change my diagnosed from MG to ALS and told him that my speech, energy and strength had improved with mestinon, and he said, "Of course they have. It's an energizer. Anybody would feel better taking it! I would feel better taking it" Which has got to be the low point in neuro stupidity. If it worked that well for "anybody" it would be a best-selling street drug.

I tried (started and stopped) mestinon three times. I stopped first because I discovered it conflicted with my beta blockers for heart disease (I found that out from a forum like this, as the neuro was oblivious to it.) I worked with my cardiologist to find a substitute for the beta blockers and got into a slugfest with the insurance, which tried to keep me on bb. When I resumed mestinon again, it again had the same benefits. Then my diagnosed was changed to ALS, and I stopped it, as it did have side effects (intense twitching), and the neuro was so scornful, I figured I must be nuts and better stick to the beta blockers. The third time I tried it, it did not improve my speech at all. Perhaps the tongue atrophy had progressed so far that it was beyond help, so I gave up.

I read in an article that Dr. Mossafar, the head of the ALS clinic at Univ. of Calif, Irvine, was quoted as saying some ALS patients benefit from mestinon. He was the one who diagnosed me with ALS, and I almost have to believe that the article quoting him is wrong, based on my conversations with him. But I keep thinking I should contact him and verify that quote. If he is prescribing it for ALS patients, this is something I would like to know.

Sorry this reply is so long ... but there's more that may be pertinant to your dad. On the "Patients Like Me" ALS forum, members (anonymously) list the meds they are taking, and about a dozen or so PALS are taking mestinon. I don't know if they are benefitting or not, and don't know how reliable the information is.

Another point. I too had respiratory failure, and was rushed to the ER then hospitalized for three weeks. I was entubated but not vented. That was in December 2007, almost two years after my symptoms began. I recovered completely from the respiratory failure, and it was that which led to my being diagnosed with MG the following month. That plus the fact that I too have double vision, which started at the same time as my speech problems.

When my diagnosed was changed from MG to ALS after five months, and I met my ALSA rep, she was puzzled by my respiratory crisis and my recovery from it. She said, "That's not how ALS works. You don't recover."

I am convinced I do have ALS ... it's pretty hard to deny at this point ... but with a wierd onset, and some left-over symptoms that don't fit the template. But each case of ALS is unique ... I think many neuro diseases not only "mimic" each over, but may actually overlap a bit. (Although MG and ALS are quite different animals, MG being an autoimmune disease, and treatable.)

And I think I still may try mestinon again, just to see if it has any benefits for me at all any more. I have a prescription left.

I pray that your father can get back on his helpful medications asap. It is horrible to deny someone a life-saving drug. Keep pushing them.
BethU is offline  
Old 07-17-2009, 03:40 PM #15
matthewdbardsley matthewdbardsley is offline
New Member
 
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
matthewdbardsley matthewdbardsley is offline
New Member
Join Date: 2009
City: Calgary
State: AB
Country: Can
Interest: I am a family member of someone with ALS/MND.
Posts: 12
matthewdbardsley is on a distinguished road
Default

Hmmm...

I had no idea that mestinon could provide potentially beneficial results for ALS patients on some occasions. Anyone else on the forum have similar situations they can share?

BethU, I very much appreciate your reply. It seemed like you put some of your own time into reading about MG/ALS to reply to me, and that was really kind/considerate of you. Thanks.

Can ALS involve respiratory failure but leave leg and arm function intact? It is too bad that my Dad is unable to have an MRI done as that might help determine some things...

I am also waiting (im)patiently for the results of the spinal tap... I hadnt considered MS and I dont think any of the DRs did either. We seem to be on a one way street towards a diagnosis of ALS.

Before the discontinuation of the mestinon, his breathing had recovered from being totally ventilated to requiring about 6 hours out of every 24. A nurse the other day said "I dont even know why he is ventilated at night, I had him last night and his blood gases were fine before being put back on" ... Do people who are very early on in their diagnosis of ALS find themselves making recoveries from a respiratory crisis?

Bethu, I am also a bit confused about your final diagnosis. Have the neuros told you firmly it is ALS or is it still up for discussion? How do they account for your response to Mestinon, and recovery from your respiratory crisis? I too was told that anyone and everyone responds to mestinon but find this difficult to believe. If it was so useful in producing increased strength, muscle control, etc... why only use it for MG?
matthewdbardsley is offline  
Closed Thread

Tags
ability, als, als?, back, bed, breathing, confused, dad, denial, diagnosis, early, exercise, father, hearing, hope, immediately, life, mestinon, mnd, neurology, night, nurses, oxygen, problems, questions, reading, respiratory, respiratory failure, speech, swallowing, symptoms, testing, tests, tracheotomy, trip, vacation, ventilator, vision, walker


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
So many mixed emotions....I am a horrible person Rhonda J Current Caregivers (CALS) 18 09-09-2015 09:18 AM
Mixed feelings on husband starting Deanna Protocol Megan Dontain Current Caregivers (CALS) 22 01-09-2015 01:03 PM
Home mixed feeding Forester General Discussion About PEG's 1 05-08-2014 06:25 PM


All times are GMT -5. The time now is 07:04 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016