deterioration of speech with Bulbar palsy onset of MND

[GinaB]

Hi,

My Dad was diagnosed with having MND on Tuesday of this week. As i am sure all of you are aware this is the most devestating news to be told as a family. No less because his own brother died over 14 years ago from the same disease, and my father cared for him throughout.

Given that this is the case, we can not hide behind the ignorance of what will gradually happen to him. we have all witnessed the demise of what was a healthy robust and active man (my uncle) until he was struck with MND, and this reality is one of the hardest things to deal with. Not only are we aware of how the story ends, but my father has witnessed this more closely than any of us.

In addition to the fact that it is rare for two people in the same family to have MND, my father has began with the bulbar onset, something of which apparantly only 25% of sufferers begin with. He has been finding it difficult to speak for several months now and this was followed by the difficulty in swallowing. We all thought it may have been related to some sort of stroke.

He is 59 and being Irish has never been one to make a fuss of anything, (he worked as a builder right up until the day he was admitted for tests). His speech is such a big part of who he is, i know this is the case with everyone, but he has always loved, singing, joking and his personality is so lively...So the prospect of him losing this ability altogether is just more than we can all bare for him.

His speech at the minute is a little mumbled , but i and others can still understand the majority of what he is saying. I know everyone is different but i wondered if anyone on here has also started with the bulbar symptoms? how quickly did they progress? is there anyone who began with this and can now no longer speak? anyone who started with bulbar and then had difficulty with legs and arms....how long did this take...?

I have searched and searched the internet for the answers to these questions, but really only those who are experiencing such instances can give me any sort of insight.

I hope someone can help.
Many thanks

Gina

 

[indigosd]

Gina, so sorry to hear that your Dad has been given this diagnosed. Welcome to the Forum! You will find such support and information and make connections that will be the wind beneath your wings. My DH is Bulbar Onset. His speech was a little slurred in Dec of 2008. It is now somewhat garbled. My understanding is that there are really no standards of progression because it is so individual. I would suggest that you have your Father do "voice banking" ASAP. My husband is now experiencing loss of strength in both arms/hands and a little dragging of his left leg. We are looking at getting a PEG the first week in December and BiPap is not to far behind. hugs to you.

 

[mad1022]

Dear Gina
My husband was diagnosed about 3 years ago with the bulbar type of ALS. As with your father, he began slurring his words followed by difficulty swallowing. He had a PEG tube installed last fall and has his nourishment strictly through the tube easing our minds a bit about the problem of chocking. His speech is truely gone now but we have been blessed through our local MDA and Medicare with a machine that keeps us in communication. Although it is not his good old voice it is great. So far no muscles in his arms and legs have been effected, just an all over fatigue.
I hope this has helped you somewhat. I know it has helped me just to share our trials with another person.

Chin up Gina
Mad

 

[BethU]

Gina ... I started with slurred speech in March 06, and lost my final bit of intelligibility in about March of this year. So for me it was about three years.

I also am (part) Irish, and have what my family calls the "Kelley wit," (well, the Kelley part of the family calls it wit ... not so sure what the other parts of the family call it) so I was always fast on the come-back and loved to joke and tease. Forget singing, however! So it is a bigger loss to me being unable to joke with people than losing basic communication, which can be remedied with computers.

Everybody's rate of progression is different. I can still walk, with a walker and much unsteadiness, and use my hands and arms a little, but have given up driving and doing much around the house. I cannot carry a plate from the kitchen to the table, so put it on the seat of the walker and push it. Etc. We all keep going every way we can think of.

I'm so sorry for your dad's diagnosed. I, personally, find it easier to be without speech altogether than it was in the last 8 months or so when I was struggling so hard to communicate. Your dad's personality will remain the same, and he will find other ways to express it. That is the good thing about ALS (maybe the only good thing): we remain basically ourselves, and what you love most in your dad will always be there.

 

[GinaB]

Thank you so much...whether My Dads experience is the same as yours or not...it has given me hope that he may remain coherant for at the least another year. At this stage he has no major signs of Limb deterioriation so i hold hope that this may be a while off also...to be fair given the logistics of such an illness all anyone can do is hope i suppose...I welcome any other experiences.

Gina

 

[brooksea]

Hi Gina! So sorry about your dad's diagnosed.

My husband started with speech being slightly slurred back in mid '06. He also began having difficulty with his left hand not being able to operate the stylus for his Palm, as his hand had weakened. Prior to that he had a choking scare in 12/05 where he could not swallow at at all and was hospitalized. They found nothing wrong. After that he would complain that food or drink would seem to be "going down the wrong way." At this point, he still talks, but he is hard to understand. I've made laminated cards for him to take with him when he ventures out by himself. He still drives, but has practically no fine motor skills left in his hands. His arms are atrophied and his legs are getting thinner. He's still walking, but loses his balance occasionally.

My husband is a very vibrant "talker." He was in sales all of his life. Even now when no one understands him, he still rambles on. He is reluctant to use a speech device, but that day is coming.

Good luck to you and your family.

Oh yeah - my husband is Irish/German all the way! What a combo!

 

[BarryG]

Gina, so sorry about your dad. I was diagnosed with ALS in Jan 08 after about 6 month of symptoms, mainly slurred speech. Since my diagnosis my speech is pretty much gone, I still try to talk but that is more out of habit than anything else. Even my wife can't tell whether I am saying yes or no sometimes so forget about "Not tonight honey, I have a headache".

So here I am with my talking computers still trying to crack jokes and still succeeding to a point. A month or so ago my three sisters came to visit for the weekend and I can say that we had a great time joking and laughing. I was able to pretty much keep up with the conversations and if your dad can use a keyboard there are a lot of technologies that are not that expensive that can give him a voice.

Other than eating and talking problems my right arm and left leg are staring to give me problems but I am still mobile with a cane and driving so I am happy.

 

[KinzaDAF]

My father began with slurred speech in July '08. In March '09 he began getting VitalStim treatments ( suggested by the speech therapist he was seeing, who obviously didn't know about how muscle overuse affect PALS ), whereupon his speech began to deteriorate faster. When I saw him near the end of August his speech was completely unintelligible. He refuses to use any kind of communication device. Right now his speech is like a low growl and is even worse, if that's possible, since it has been unintelligible for a good while.

Debbie

 

[Gelthling]

Mum has Bulbar, Dad had noticed mum talking had a slight slur in March 08 (my brother and I hadnt noticed). Speech progressively got worse, Last October she started having a limp and falling on stuff. She was finally diagnosed in Feb/Mar this year. When diagnosed she had just started to use a cane,in the past 7 months she is now in wheelchair as she cant even walk down the hall in her house, basically no speech and her swallowing - she can only have pureed food and even then she is starting to have more frequent chocking episodes. Her arms have been the last to be effected, but they are just generally week, and she has a weak neck too. Just telling you this as alot of people above seem to be progressive relatively moderately, where as mum has a fairly quick progression- so everyone is different. Here's hoping your dad is rather slowly progressive!

Best of luck, just take each day as it comes!

 

[rachelg]

Hi Gina

I am so sorry about your dads diagnosed.

We are also in the UK - Somerset. I hope you have a good team in place helping out.

My husband Mark was diagnosed in May 09.

August/September 08 - speech started to slur.
March 09 - difficulty chewing and swallowing.
May 09 - diagnosed with MND/PBP
June 09 - PEG feeding tube fitted to ease eating difficulties and to maintain weight.

And now - Marks speech is unintelligible. He uses speech software on his laptop and the iphone with text to speech.

Mark can only really manage angel delight consistency food but still likes to give most things a good try but with great caution. He is night fed with multifibre nutrition.

His left hand is slightly less responsive than his right and his left leg is showing slight signs of weakness.

Try and remain positive and with a good team in place always try to keep one step ahead.

Take care.
RACHEL

 

[akhira]

Re: Bulbar palsy onset of MND

Hi Gina
Very sorry to note about your dad. Thought of writing to you as I am also suffering from the same - bulbar onset and my speech is deteriorating. My symptoms were noted around Dec 06/Jan 07 with only some words being a problem. Although it PBP was diagnosed quite early, it took the medic team until May 09 to confirm (technically) that is MND, don't know why!

Because of this technical medical uncertainty people around me still in doubt and I keep facing daily difficulties. Speech very very effortful, and swallowing problems, random fascullations and muscle spasm, excessive yawning and locking jaw (!), sneezing at times has been painful and couple of times have beaten my tongue and teeth collision has cost me a broken front tooth !

Although I am still able to manage to walk and run a little (thank god) but my stamina has definitely been affected. Progress (if I call it a that) has been very slow and I have also heard that due to very slow rate of deterioration some times the symptoms can just stagnate... Don't know how true it is, but I generally keep positive and go on with what ever I can manage.

I an still use my arms and legs so will keep fingers crossed. I have also been recommended to get a PEG. Not got it yet, but will see what happens. I am based not too far from Richmond in England
Keep positive and enjoy what ever life throws at you !
Ash

 

[Tfisher]

Hi Gina,

Sorry to hear about your dad. My mom was diagnosed June 08 and slurred speech started in June 07. My mom communicates by using a light writer, grease boards or computers. All of her nutrition is through the tube. She still walks with a walker but has noticed more weakness in arms and legs in the past few months.

Hopefully your dad's progression will be slow. Take care.

 

[GinaB]

Thanks to all for your messages, it really genuinely helps to know there are others out there in the same position as my Dad. Not sure if anyone else has experienced difficulty in breathing in conjunction with bulbar, but he was supposed to leave the hopsital today and last night he was finding it difficult to breathe, they are now moving him to another hospital for specialised treatment for this. Apparantly they do something called blasting and can help to make his lungs stronger...no idea what this means or more worryingly if it is suggestive of a sudden demise in his condition.....

 

[BarryG]

Gina at my lasts clinic the respiratory technician gave me a device for me to use for lung exercises called Lung Volume Recruitment. It is something that was developed by the Ottawa Hospital Rehabilitation Centre and the University of Ottawa and what it is supposed to do is improve chest movement, prevent and clear phlem from collecting in the lungs, prevent small areas of the lung from collapsing, improve cough and increase speaking volume.

It uses a modified resuscitator bag and here are a couple of links, maybe this is what they mean by "blasting". I have only been doing this a couple of times a day for less than a week and I think that it is helping me and I feel that I have more air.

http://www.irrd.ca/education/policy/LVR-policy.pdf

http://www.caritas.ab.ca/NR/rdonlyres/eaavz3db77nc66p3zdkwfkuebbvmp3xrfvvl52iwsrx2byzwu4proz5s4ji43kkuzpjoxqv6padgwm/LVR%2Bwith%2BVolume%2BAugmentation%2BBag1.pdf

I haven't really had any breathing issues yet (no bipap) but have seemed short of breath more lately. Maybe I'm just out of shape. :roll:

 

[sesl]

Hi Gina,

My Mum started noticing speech difficulties in June '09 and by October '09 her speech is virtually unintelligible. That seems faster than most of the other replies you've had.

She has also been experiencing thick phlegm caught in her throat (papaya extract tablets help with that), and excess saliva (sage tablets have been recommended, but she hasn't tried them).

She is having trouble with some hard or chewy foods and she can't use her tongue to clean out the inside of her mouth (she has bought a water pick).

She has no sensation of weakness in her limbs although nerve tests have shown that her limbs are affected, just not enough yet.

It is very tough on your family to have two people with the same awful disease. I'm so sorry.

sesl