Bulbar symptoms

[andie13]

Does anyone have the symptom of really needing to concentrate to form words? My Mom's speech sounds thick and nasally at times and her neurologist said she has jaw jerk relflex. My Mom said she notices she needs to concentrate but doesn't notice swallowing problems. Doctor is sending her for a swallowing eval anyway. She is also going for another EMG with an ALS specialist and more MRIS...although her doctor does not expect any findings on those.

[CindyM]

You and your Mom are entering one of the most stressful periods - the time of waiting and esting and waiting some more. I am sorry this is happening to your family. It is hard to know what to say- you hope people get answers soon but then again some answers are not so good. Take care. We will be with you every step of the way. Cindy

[andie13]

Thanks for your kind words Cindy. The support of the forum is really comforting. I know my mom has a tough road ahead of her and I want to do the best i can to support her through it. She is only 55 years old and has been through so much already with this disease. Her Dr. said it is definitely a MND, just determing which one now. She has been living with me for 4 years now and slowly has worsened... Thanks again for your reply. Take care.

[Debohern]

My heart goes out to you Andie. I am experiencing similar stuff with my mom. Only my mom is 79. She started out in June seeking medical attention for slurred speach, excess saliva to the point of drooling and coughing/choking episodes. EMGs inconclusive, MRI, CT, spinal, etc. as well. 2 out of 3 neurologists diagnosed it as ALS. Her family Dr. put her on 40 mg prednisone daily, then tapered her down. Saliva dried up so choking and drooling decreased. She does though have difficulty expressing herself besides the slurred speach. I will watch the forum for results of your visit to the ALS spec. because I want to do the same for mom. I'll be thinking of you and your mom. Besides the MND has she had other stressors? i.e., death in family, etc.? Sincerely, Debbie

[andie13]

Debbie,
I am so sorry to hear your having the same troubles as me. Watching a parent go through something like this is so heart wrenching regardless of their age. It can make you feel really helpless. My mom has diabetes which could definitely be considered a stressor as it is very hard to manage. No emotional stress so to speak, no deaths etc.
She is in fair spirits. I think Cindy hit the nail on the head when she said it's the waiting...Having a DX , no mattter what it is, would be a little better than wondering constantly. Although, I understand the difficulty in diagnosing... Keep me posted on your mother as well. Everyone here is so brave.

[aspen07]

My MIL has ALS (Bulbar) and her spouse just passed away. She seems to be going down hill more days than not, i read a post on stresses and how they can push the disease quicker, we seem to be struggling more with verbalizing, take a swallow and just walking... thanks for any input.
aspen07

[Geo]

Well Ladies Im a PLS Bulbar Patient ,when the facial ,laryngeal ,pharnygeal muscles are affected all of those problems occur . I have some days when forming the words is not good .But i have learned to swallow on one side . Sounds impossible but it can be done ,i have no problem with solids only liquids and only sometimes .my speech is hypernasal and slow slurred ,im still around after 7 yrs. was 55 when symptoms began am 62 now .Only one test proves ALS for sure EMG ,this measures the electrical activity in the nerves
I did Vital Stim Therapy at a Local Hospital which helped my speech and swallowing but if you have a diagnosis of ALS they say it makes it worse . Being upset is a BIG factor in our disease symptoms .Dont let Doctors tell you oh you need a Pshycologist ,this is an excuse for lack of a proper diagnoses (COP OUT) .All the parts of the Brain are so close together emotions are affected. I have found my Lady Docs. have by far been more Compassionate than the men Docs. Women must have this built in when their born .Geo

[Icanmanz]

aspen, I am so sorry to hear about you MIL's spouse, your (FIL?) May he rest in peace, and now that leaves your MIL in a grieving state, while she is suffering with this monster disease. Have you'll considered taking her to a doc, and maybe he can prescribe her something? My son's doc always told him about how bad stress is for Pals. Wishing you luck and God bless!

Irma

[Cari]

Hello,

This is my first time on this site. I was diagnosed with Progressive Bulbar Palsy almost two years ago. The day I was diagnosed I decided that my goal was to be "super" healthy until a cure is found. My work at this point is with the alternative medical community, but I see my neurologist every 4 months so that I am connected in case some new drug comes along. My swallowing, chewing and speech are impaired but I feel great and have a full and wonderful life. I am grateful for my loving family and friends. Two things have been suggested to me that I would like to know if anyone has had experience with. 1. Comprehensive Therapy Program" which was suggested to me by my cranial/sacral therapist and 2. Hyperbaric 02 Therapy which has been suggested by my holistic nutritionist.
Thanks so much,
Cari

[wright]

Hello Cari

One of the last things you should be doing is hyperbaric oxygen therapy. There might be a link between ALS and free radicals (it is actually one of the leading theories behind ALS), and superoxide is one of the most predominant and powerful free radicals we produce in our bodies. Superoxide is produced naturally in our bodies from oxygen molecules and the body is always busy trying to "mop it up" so to speak. Much more superoxide would be produced during hyperbaric oxygen therapy, given that it would increase the partial pressure of oxygen (i.e. level of oxygen) within the body immensely.

Everyone needs to be very careful when it comes to therapies for ALS that have not been scientifically proven and as far as I know, none have been proven yet. That is why lithium therapy, for example, is still a controversial subject and why there are continuing studies on it to determine whether it has merit. Now does that mean you shouldn't be on lithium? No, and I have actually stated that it probably isn't a bad idea, given the fact that lithium is FDA approved and is tolerated very well. That choice is up to you. It could very well turn-out to be the miracle drug but it can also very well turn-out to accelerate ALS.

[hopealive]

Wright,

Now you have me thinking. My mother bulbar ALS for 2 years, and I went to an oxygen bar while on vacation in Las Vegas. I figured harmless right? She cannot eat so lets do something fun and different. Well, shortly after the session she began coughing a very deep wet cough, and later that evening we ended up in the hospital, she was choking and needed suction to breathe. Very scary. Do you think there is a correlation?

Thanks so much.
Holly

[wright]

Hello hopealive

No, I don't think there's a correlation. There is no way that one session like that is going to cause a pathological condition like ALS. It would have to be prolonged exposures. The reason I told Cari not to do hyperbaric oxygen therapy is because it would only hurt and not help her condition. It also gave me a bit of forum/segway to tell people to be careful of unproven therapies.

[sharonca]

Holly - I'd do a search on oxygen and ALS. I think I have read that oxygen therapy is not so good for PALS. What happened to your mother might be something we should all pay attention to. It didn't cause the disease but perhaps got some symptoms going. Maybe in the same way that a cold chill will kick excessive yawning and other symptoms into high gear.

Just a thought.

Sharonca

[hopealive]

Thanks guys.

I haven't found anything very conclusive yet on ALS and oxygen, I will keep you posted.

Love,
Holly

[hboyajian]

I think I have heard the following. The reason for not using oxygen treatment alone in ALS is that when the oxygen levels are raised artificially the body gets the message that deep breathing is not necessary. This in turn can impair the exhalation of carbon dioxide, which is not a good situation for PALS, as it can build up in the bloodstream causing mental impairment. I don't think this would happen so quickly (fron one oxygen treatment), but that would be a question to ask. Breathing out is as important as breathing in. A bi-pap machine is supposed to assist in keeping the natural breathing rhythm functioning, as opposed to c-pap which keeps the airway opened but doesn't have a cycle for breathing out, or plain oxygen which provides O2 but doesn't help eliminate CO2. My dad passed away from ALS over a year ago and these were some issues and questions we had at the time. I am another Holly.

[wright]

Just to add something else

Hyperbaric oxygen therapy is breathing oxygen under high pressure (i.e. hyperbaria). This will cause the partial pressure of oxygen to be raised in the body, which will cause more oxygen to be dissolved in our blood. These artificially inflated levels of oxygen can be used to make more superoxide causing more oxidative stress to our cells (e.g. motor neurons), which again, is a theory in the etiology of ALS.
Hyperbaric oxygen therapy is very different than breathing supplemental oxygen and sometimes, one has no choice but to breathe supplemental oxygen if their oxygen saturation levels are too low. Having said that, if one were to breathe high levels of oxygen, often and for prolonged periods of time (for example, a fireman and the use of oxygen masks when fighting fires), this could potentially cause additional oxidative stress to the cells of our bodies (e.g. motor neurons). That is complete speculation, but gives a scenario where "extra" oxygen can cause harm.
As a further note: high level of oxygen is certainly by no means the only thing that causes oxidative stress in our bodies. Many, many, many things that we are exposed to, cause damage also . . . AND . . . our bodies naturally produce these molecules that cause oxidative damage as well.

Anyway, I just wanted to clear that up a bit.

[vmd]

Interestingly, oxidative stress is hypothesized to be involved in vitiligo, as well (a condition I suffer from).

[Shatzie]

Andie-

Besides slurred speech, the next symptom that I noticed that several times in a day, when I went to say the next word, it just wasn't there. Maybe the word was "the" or something so basic, but I would be talking along and stop abruptly. Sometimes it takes 30 seconds or more for the word to come, but it eventually does.

[rose]

Andie-

Besides slurred speech, the next symptom that I noticed that several times in a day, when I went to say the next word, it just wasn't there. Maybe the word was "the" or something so basic, but I would be talking along and stop abruptly. Sometimes it takes 30 seconds or more for the word to come, but it eventually does.

Shatzie, About not being able to say the word, are you thinking of the word you want to use, its not like you're searching for it, but rather it takes a while for it to come out? Is this what you're describing? I've noticed I slow down sometimes before certain words. Its not like I'm mentally casting about for the word, but rather there is a hesitation. The neurologist wrote it up as possible spastic dysarthria. Something that I found very frustrating was when I was having the modified swallow test, and at one point when I was instructed to swallow I absolutely could not. Could not even attempt it, it took well over 30 second (seemed longer). When that happened, it was upsetting because my other problems with the swallowing process had not been because of an inability to swallow....

[Shatzie]

When I have trouble finding the word, I cannot even think of the word I am looking for, I draw a complete blank for a short period of time.

[sharonca]

Shatzie - I'm having that word problem also. I find that my family is filling in the word for me. I haven't said anything to my husband or friends because that was one of my mother's first symptoms with frontal lobe dementia. YIKES! We all filled in the word for her for a long time before we caught on that there was something to it. Let's just hope we are having brain fog. I do plan on telling my neuro at my next visit in June. Until then I'll just keep it to myself and all my friends here.

Sharonca