Status
Not open for further replies.

Raina

Member
Joined
Jan 7, 2007
Messages
12
Reason
PALS
Country
AU
State
Western Australia
City
Bunbury
Hi,

First, thanks for the Forum. I have spent a while over the last few months checking out the posts here. This is a very useful site, I have spent 3 years trawling the net for info.

We are interested in talking to anyone who has similar symptoms to my hubby Dave.
Dave has an undiagnosed upper motor neurone disorder. He first started loosing his speech in Dec 2003 and is slowly progressing. Speech is pretty bad most of the time, although he does have some better days than others (a lot depends on fatigue) and has plateaued a few times. We will be looking at assisted speech devices in the next year or so I think.

Other symptoms are; dysphagia (swallowing problems), frequent aspirations and emotional lability, and also a slow blink reflex.

Dave has no other symptoms, is fine and strong everywhere else in his body.

EMG on Thursday just gone was clean. Our neuro (we have had 3 opinions, all telling us the same) is telling us that we may never have a diagnosis and it could be one of 6 or 7 things, none of which he will tell us until Dave has other symptoms. This is fine, we understand after 3 years of no diagnosis that if we are given the wrong diagnosis it could cause a lot of unnecessary distress. We are aware the EMG was checking for lower motor (and possible ALS) involvement - thank god, none at the moment!

Anyone out there going through the same sort of thing? We would be really interested to talk to you.

Have a great day to all you people who frequent this board, keep smiling and stay strong.

Raina
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Hi Raina: Firstly welcome to this forum. The people here are very helpful.
I am sorry that your husband is experiencing these symptoms.

I am not sure if you have read any of my posts but I will briefly fill you in my mother's condition which is similar to your husband's.

My mother is 75 and for two years had been experiencing hoarseness of her voice. We started seeking different doctors and no one could give us any indication of what was happening. Last January we noticed her voice was getting lower in pitch and by April she started slurring her words. At that point we went to a neurologist ( June '06) where she had an MRI and an EMG and nerve conduction test which were all clear. She was also experiencing the emotional lability, drooling and having mild swallowing difficulty at that time. He then referred us to the ALS clinic in Toronto (june 27 '06). My mom has been diagnosed with motorneuron. disease. She is extremly active and her motor skills along with the fine motor skills are excellent. She unfortunately has lost all of her verbal speech ( since end of July ) and the swallowing has become progressively worse especially now that her tongue has no movement at all. She is actually on an emergency waiting list for the feeding tube to be placed.

We were told from both neurologists that it could remain localized to the mouth area. We are praying that that will be the case.

Just want to let you know that you are not alone. If you have any other questions feel free to ask. God Bless. Anne
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Raina. I don't have bulbar symptoms but just want to welcome you to the forum. Hope you get some help and friendship here. AL.
 

Raina

Member
Joined
Jan 7, 2007
Messages
12
Reason
PALS
Country
AU
State
Western Australia
City
Bunbury
Hi Anne,

Thanks for posting, and for the offer of support, I am so sorry to hear about your mother. I really feel for you, it must be stressful for her and for your family.

Dave's speech has got quite nasal over the last 9 months and he is quite hard to understand at times. May I ask if your mother can make any sound at all? Also, does she have excessive yawning. Dave feels does and he feels this is related to his problem.

Luckily we have 2 great kids (girls, 9 and 11) and great family support which helps, but we sometimes feel we are at the edge of a cliff waiting to jump off, we try to live each day to its fullest and not think too much about the future, but it is pretty hard.

We have been seeing a great speech pathologist who has given Dave some very useful swallowing exercises. He has gone from sleeping on 4 -5 pillows a night back down to 2 pillows and is managing his saliva better than he was. Does your mother have aspiration problems with her swallowing issues?

From what I understand if a person only has upper motor involvement for 5 years, they are diagnosed with either PLS or bulbar ALS, if there is lower motor involvement the diagnosis is ALS. Bulbar ALS usually progresses to lower motor involvement sooner rather than later. Not sure if I am entirely correct!

Anyway, thanks for posting again Anne, I hope to be talking to you again in the future.

Have a great day.
Raina

anne said:
Hi Raina: Firstly welcome to this forum. The people here are very helpful.
I am sorry that your husband is experiencing these symptoms.

I am not sure if you have read any of my posts but I will briefly fill you in my mother's condition which is similar to your husband's.

My mother is 75 and for two years had been experiencing hoarseness of her voice. We started seeking different doctors and no one could give us any indication of what was happening. Last January we noticed her voice was getting lower in pitch and by April she started slurring her words. At that point we went to a neurologist ( June '06) where she had an MRI and an EMG and nerve conduction test which were all clear. She was also experiencing the emotional lability, drooling and having mild swallowing difficulty at that time. He then referred us to the ALS clinic in Toronto (june 27 '06). My mom has been diagnosed with motorneuron. disease. She is extremly active and her motor skills along with the fine motor skills are excellent. She unfortunately has lost all of her verbal speech ( since end of July ) and the swallowing has become progressively worse especially now that her tongue has no movement at all. She is actually on an emergency waiting list for the feeding tube to be placed.

We were told from both neurologists that it could remain localized to the mouth area. We are praying that that will be the case.

Just want to let you know that you are not alone. If you have any other questions feel free to ask. God Bless. Anne
 

Raina

Member
Joined
Jan 7, 2007
Messages
12
Reason
PALS
Country
AU
State
Western Australia
City
Bunbury
Hi Al,

Nice to meet you, thanks for posting and for your support. I am sure we will chat in the future.

Raina

Al said:
Hi Raina. I don't have bulbar symptoms but just want to welcome you to the forum. Hope you get some help and friendship here. AL.
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Hi Raina....My mother lost her speech rather quickly. She was able to speak to the neurologist (Als clinic) at her first appointment back on June 27th. Within two weeks we could not make out what she was saying. She can make sounds, sometimes louder than others. I can sometimes understand yes and no. Not everyone progresses at the same pace. Does your husband have good movement of his tongue? She does not have excessive yawning. What I have noticed is when she sneezes it is like an explosion. As far as her swallowing is concerned, we had gone for a video swallowing test back in Novemeber. The food was going down in the right direction but her problem was that her tongue worked very hard to get the food to the back of her mouth prior to swallowing. She is having much more difficulty now in swallowing and feels that the food gets stuck in her throat or chest area. She is coughing more so when eating now and her lips are weak so the food or drinks will fall out of her mouth. She is on an emergency waiting list for a feeding tube. We take it one day at a time and I treasure every moment that I am with her. God Bless. Anne
 

COlisa

Distinguished member
Joined
Feb 21, 2006
Messages
120
Hi Raina,
My husband (also named Dave :) ) has similar symptoms. Started with slurred speech in mid-2005. Initial diagnosed of ALS in Feb 2006 was changed to "Progressive Bulbar Palsy" (PBP) in March after clean EMGs. PBP is a related motor neuron disease, but does not affect limbs. If/when symptoms progress to limbs, diagnosed will change to ALS. It is a fine line, but one that Dave's neuro clearly distinguishes between.

From what I've read, though, PBP has no better (and is usually worse) prognosis than ALS.

Fortunately my Dave is experiencing fairly slow progression. He is still understandable most of the time, although it gets more and more difficult for him to clearly enunciate. Very nasal tones and cannot do certain sounds at all (anything that involves the back of the tongue/throat like "K" or "X" sounds). He went to speech path, but she warned him about over taxing the muscles with exercises as it can actually speed progression.

One of the frustrations is that for whatever little research is being done with ALS, there is virtually none being done on PBP specifically. With PBP diagnosed, Dave will not be eligible to participate in any ALS clinical trials. Very frustrating.

All the best to you and your Dave :).
Lisa
 

ross

Member
Joined
Jan 6, 2007
Messages
16
Country
US
State
Kentucky
City
Ft. Thomas
speaking device's

My mom has a very hard time talking and I have been concidering getting her one of thoseprogramable devices that all you do is push a button and it speaks the programed sentance or work has anyone tried one of these and how well do they work ? mom has PLS very progressed and I am not real sure how well she can use the buttons although she still uses the TV remote
 

Raina

Member
Joined
Jan 7, 2007
Messages
12
Reason
PALS
Country
AU
State
Western Australia
City
Bunbury
Thanks to all who have replied to this thread.
I appreciate all the advice I am getting, it is great to have somewhere to go to learn about this horrible disease.

The frustrating this is waiting for a difinitive diagnosis. My Dave wants one. We have 2 children (girls 9 and 11) and he wants to know for this reason.

From what I gather, if you have to have no lower motor involvement for 5 years you will be given a diagnosis for PLS.

Can anyone tell me if this is correct?

thanks
RAINA
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Raina. I have read that if you don't have lower motor neuron involvement after 2 years the disease usually remains an upper motor neuron disorder.
AL.
 

Judith

Distinguished member
Joined
Jan 31, 2007
Messages
338
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
Raina said:
Hi,

First, thanks for the Forum. I have spent a while over the last few months checking out the posts here. This is a very useful site, I have spent 3 years trawling the net for info.

We are interested in talking to anyone who has similar symptoms to my hubby Dave.
Dave has an undiagnosed upper motor neurone disorder. He first started loosing his speech in Dec 2003 and is slowly progressing. Speech is pretty bad most of the time, although he does have some better days than others (a lot depends on fatigue) and has plateaued a few times. We will be looking at assisted speech devices in the next year or so I think.

Other symptoms are; dysphagia (swallowing problems), frequent aspirations and emotional lability, and also a slow blink reflex.

Dave has no other symptoms, is fine and strong everywhere else in his body.

EMG on Thursday just gone was clean. Our neuro (we have had 3 opinions, all telling us the same) is telling us that we may never have a diagnosis and it could be one of 6 or 7 things, none of which he will tell us until Dave has other symptoms. This is fine, we understand after 3 years of no diagnosis that if we are given the wrong diagnosis it could cause a lot of unnecessary distress. We are aware the EMG was checking for lower motor (and possible ALS) involvement - thank god, none at the moment!

Anyone out there going through the same sort of thing? We would be really interested to talk to you.

Have a great day to all you people who frequent this board, keep smiling and stay strong.

Raina
Hi Raina,
I started having speech problems in Feb. of '04. It felt like my throat closed up and I would speak nasally. It only happened once in a while and only at home. In Oct. of '04 it started at work. In Dec. of '05, I retired from work, because my speech was very slurred. Like your husband, it has only affected the bulbar region. My limbs and trunk are fine and strong and I feel great. I just can't speak. My husband and my sister can make out some words, but most the time I have to repeat, or write down on a writing board. No one else can understand me. I do choke on my saliva sometimes. I was yawning a lot, but seems like it has subsided.
I was first diagnosed with Progressive Bulbar Palsy. Then I went to UCLA and they diagnosed me with Primary Lateral Sclerosis. After receiving the diagnosed from UCLA, the 1st neurologist agrees that PLS is a more accurate diagnosed. Both EMG/NCS came out clean.
Has your husband purchased an assistive communication device yet? What kind is it? I've been thinking about it, but don't know if it would be any better than a writing board. I really miss being able to use the phone. I don't like having the relay operator assist.
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Speech Device

My brother Timothy's wife that lives in WV. has CP and uses The Dynavox Speech Device.
The MDA in Alabama has found Timothy one out of a loan closet. You may check with your State MDA office. Our MDA Rep. is checking it out. Timothy can still talk just like anybody else. He can't use his Arms or Hands. We are hoping we can use it on a computer, so that he can be involved in something useful, he loves writing songs.

Check out this site:

http://www.dynavoxtech.com/

I hope it is helpful!

Lorie:-D
 

manfred pungartnik

New member
Joined
Jul 8, 2007
Messages
7
Reason
PALS
Country
CA
State
quebec
City
pierrefonds(montreal)
pbp..swallowing

Hi ,I posted this info on another site at an earlier time...drinking papaya juice seems to help with swallowingroblems..of course it may depend on the extent of the damage.Seems to have something to do with the active ingredient,papain,and its effect on the smooth muscles.Hope it works for those in need.Manfred
 

Debohern

Member
Joined
Aug 1, 2007
Messages
12
Country
US
State
ID
City
Eagle
Hi Raina,

This site has been a God=send to me and I hope it will be for you as well! My mom has had bulbar symptoms for 3-5 months now and has one diagnosed of ALS and one diagnosed of "I don't think so". So she has decided to live with this disease "without a name". Reading this thread was the first time I heard anything about upper neuron disease and the fact that after so many years it may not progress. Also, I liked the mention of drinking papaya juice to help with the choking from another member! These are very helpful ideas. Any tongue involvement? Thickened? White coating? Split down the middle? Mom has this.
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Hi Debohern: My mother has bulbar ALS. She has great difficulty opening her mouth but I do remember when she could and she complained the thickening of the tongue feeling. She had a white coat on her tongue which she would try to scrape off.
The tongue also had a split down the middle. I remember seeing the fasculations on her tongue. Unfortunately because she cannot open her mouth more than 30 mm I am not able to have a look anymore. Take care. Anne
 
Status
Not open for further replies.
Top