Question about Bulbar Onset ALS

[thelma313]

Hi,

My Dad was diagnosed with ALS a week ago. It has completely shocked us all. He started having slurred speech back in February and it has gotten progressively worse. Now he has trouble swallowing and often chokes while he is eating. It breaks my heart to see him this way. My Dad never ever cried and now he breaks down regularly.

I have been researching this on the internet and quite frankly I am pretty scared. I know that I have to build up my courage and be strong for him. I have managed not to break down in front of my Dad and I tell him I am here to fight with him. Any ideas what else I can say to help him?

Also, I am wondering if what he has is considered Bulbar Onset ALS? So far, his speech and swallowing have been the most affected and he seems to have a lot of mucous in his throat. He says he has stiffness in one ankle and he did fall once in the garden. I am worried that Bulbar ALS progresses faster than Limb onset and I am living in a constant state of panic right now. Any advice would be appreciated.

Thanks!

 

[brooksea]

Thelma,

Very sorry about your Dad's diagnosed.

Yes, the slurred speech and swallowing issues are referred to as Bulbar symptoms.

My husband was diagnosed 09/06. His first symptoms were slurred speech and excessive yawning along with fasciculations in his left hand and arm. He is still ambulatory and can be understood by friends and family. Many others cannot understand him. So, he's still going after two years. But, there is no way to predict how your Dad will progress.

Sometimes you don't need to "say" anything, but rather make sure you are just there! You will find in this journey with your father that many friends may no longer frequent your father's doorstep and the people you least expect will step up to the plate. You can certainly be there to fill the void with appropriate activities and support.

And by the way, it's OK to break down in front of him.

 

[BethU]

It breaks my heart to see him this way. My Dad never ever cried and now he breaks down regularly. I know that I have to build up my courage and be strong for him. Also, I am wondering if what he has is considered Bulbar Onset ALS? So far, his speech and swallowing have been the most affected and he seems to have a lot of mucous in his throat. Thanks!

Hi, Thelma. I'm so sorry about your dad's diagnosis. I know how heartbreaking it must be. I agree with CJ completely ... you don't have to try to act strong for your dad. Just be there for him.

What your dad has is called bulbar onset, and his symptoms sound a lot like mine (speech, swallowing, too much mucous). In my case, bulbar has not progressed faster than limb onset. I've had ALS symptoms for 2 1/2 years now and I'm still active and fairly strong. I just can't speak clearly, and have various problems with saliva and swallowing. There are people on this forum with many years of survival with bulbar onset, so there is good reason to hope for your dad.

When I was diagnosed (this May), I went through a couple weeks where I couldn't stop crying when I was around anyone. I think this was from the shock of the diagnosis and my fear of the future. This went away, however. Once you get over the shock, you realize that this is a disease you have to "manage" ... there are a lot of logistics in dealing with these symptoms, but there is also a LOT of help availble. The ALS Association is a god send. I would contact them right away; they will help both you and your dad learn how to handle this disease.

There are emotional issues with ALS, too ... the disease itself sometimes causes inappropriate outbursts of crying or laughter. Your dad's doctor will probably prescribe a medication to handle that.

Your dad is blessed to have you there with him, loving and helping him deal with this.

Hang in there,
BethU

 

[thelma313]

Thank you both so much for your responses! I definitely feel a little better now and more hopeful. I spoke to my Dad this morning and he sounded pretty good. He is an avid gardener and a true handy man and he was working outside and feeling a little better. His doctor prescribed an anti-depressant, which I think will help him.

CJ, I am very encouraged to hear that your husband is still speaking 2 years since his diagnosed. I know there is no way to predict how my Dad will progress but it helps to hear about others' experiences.

BethU, thank you for sharing your personal experience. You sound like a strong person and I appreciate your input.

I knew next to nothing about ALS just a week ago. My father's diagnosed came right out of left field. We were so sure he had Myasthenia Gravis. All I knew about ALS was that it was called Lou Gehrig's disease and it was bad. I had seen a film called North Country a couple of years ago, in which Frances McDormand plays a character who gets the disease and I just remember thinking it was horrible and sad that this disease even exists.

My mother is a real trooper and is doing all the research she can about it and even called the ALS Association the day after the diagnosed. We're all so lucky to have her! One thing I have realized reading these threads is that the people afflicted with ALS and their family members are a true testament to human courage. I commend you all.

 

[Kevinski]

Hello and hang in there

Hi Kevin From Calgary,I grew up in Rosemere north of Montreal.Have been out west since 1981,am 48 and was diagnosed with bulbar onset als in june of last year.Initally was speech issue that prompted me to seek medical advice.All kinds of tests ,over a year before i got the final diagnosed.So far it is my speech which is affected ,is pretty well gone.My family can get the drift of what i am saying.,but not always.Have a speech device called a dynavox ,I type and it speaks.So I use that and write a lot of notes .Sucks to be sure.Have two kids 19 and 16 and my wife ,sometimes i think this whole mess is harder on our loved ones around us.In June iwas the ambassedor for Bettys walk and Run als fundraiser.I did not want to just show up and make a speech and go home,so my kids and I did Kevin's Ride for Betty.We biked from where i live outside calgary to the walk site 110 km.Felt while i was still able was the right thing to do.I have told my kids to still go after there dreams and goals and try not to dwell on my condition as ther is nothing anyone can do anuway,and if you do not live life the disease wins on all counts.I dont know how old you are or how old your dad is ,but am sure your dad would want you to still live life and be as happy as you can under the circumstances.So anyway stay strong and all the emotions you are feeling are normal,just try not to be in the dumps all the time.Feel free to e mail me I am a good listener [email protected] chance...kevin

 

[Kevinski]

resources in Montreal

Hi Kevin Here again.I posted a reply but has not been ok'd yet by the moderator.Thru my role as ambassedor for the walk in Calgary ,was put in touch with Tony Proudfoot,he used to play for the Alouettes and did th broadcasts until his speech went ,he too has Bulbar onset and is very connected and involved in fundraising in the Montreal area.If you contact me i can put you two in touch with each other as he will be aware of support networks in the Montreal area which may be of help to your Dad and your family...Kevin

 

[Al]

Sorry Kevin. Somehow I missed this one.

AL.

 

[thelma313]

Thank you so much Kevin, your response means a lot. My father is 68 years young.
Right now I am in New York, doing a dream job. I've been here since June and am supposed to stay here until November and I have to say, I feel very guilty about not being back home with my Dad. I of course flew home for the weekend right after the diagnosis to be with him. When I left to come back to NYC, it was very very hard and he told me over and over not to worry about him and to appreciate this opportunity I have but it's difficult. I call every day to check on him. One thing is for sure, he is a strong and proud man and the type of father who really is happiest when his kids are happy and doing well. You too, Kevin sound like a wonderful father and your kids are so lucky to have you. I am so sorry that your speech is so difficult but thank goodness you can type. I hope that my Dad learns to type because he has literally never even turned on a computer or typed an email however he is very smart so if he wants to he'll learn.

Of course this is very new right now and I definitely think about it A LOT! For the first week,I could barely speak to anyone without crying. I also felt very very angry and wanted to punch something like a mailbox or a wall. I know that my family will make it our mission now to raise awareness about ALS, stay strong for my Dad and do whatever we can like the walk that you had in Calgary or any fundraiser we can participate in.

Thanks to all the people who wrote on this thread. You are all amazing!

 

[Kevinski]

Dreams

Hi there Kevin ,sometimes in life when we as people really want to realise a dream or goal,sometimes this means sacrificing a lot of important things.As you told me you are in NYC doing a dream job.Something I presume you have put alot of effort and sweat getting to where you are.And i know you are torn being away from your Dad.Stay and chase your dreams and be there for your Dad when you can.Your Dad would not want it any other way.Like i said if you don't this disease wins on all fronts.So hang in there,focus on the things you have control of and try not to be consumed by what is happening with your dad ,cause you will just drive yourself crazy...Kevin

 

[thelma313]

Kevin, thank you for your wisdom and insight. I think one of the most important lessons this disease can teach us is to live in the present, not anticipate the future and not dwell on the past. My father is still okay. He has trouble talking and eating but those things are still possible right now and he can walk and do the things he loves like gardening and playing golf.

I did work very hard to get to New York and I will return to Montreal in November so although my first instinct was to go home immediately after learning the diagnosis, I will stay and finish this job and try very hard not to drive myself crazy with worry.

Thanks Kevin! And thanks for the advice on Montreal resources. We will definitely look into that.

 

[Jennifer51]

Hi,

My Dad was diagnosed with ALS a week ago. It has completely shocked us all. He started having slurred speech back in February and it has gotten progressively worse. Now he has trouble swallowing and often chokes while he is eating. It breaks my heart to see him this way. My Dad never ever cried and now he breaks down regularly.

I have been researching this on the internet and quite frankly I am pretty scared. I know that I have to build up my courage and be strong for him. I have managed not to break down in front of my Dad and I tell him I am here to fight with him. Any ideas what else I can say to help him?

Also, I am wondering if what he has is considered Bulbar Onset ALS? So far, his speech and swallowing have been the most affected and he seems to have a lot of mucous in his throat. He says he has stiffness in one ankle and he did fall once in the garden. I am worried that Bulbar ALS progresses faster than Limb onset and I am living in a constant state of panic right now. Any advice would be appreciated.

Thanks!

I also had symptoms of slurred speach, starting in Jan/Feb of this year...just thought it was something silly...saw the gp at the end of march and within days was told that they suspected Bulbar onset....they tried to make it sound all technical, so I asked them straight out, and they said yes...within a couple of weeks all tests were completed and the confirmed the DX. I too spent a lot of time crying with my husband of 36 years and with our grown up children...........I went straight on to Rilutek, which helped immensely with the terrible twitching I was getting by then...still twitch all over 24/7 but it is not quite as violent. I am still walking ...ok indoors but cant go too far outside, and stairs are now getting a bit difficult...speech is understood by friends and family, but I avoid talking to stangers now. Now attend an ALS clinic... I have found swimming to be a great help...seems to wake up my muscles and takes the weight of the limbs, and I try to go on my treadmill for at least 20 minutes a day.... ANYTHING to keep myself going. Good news in the UK...the MND association are just trying to get funding £500,000 for one or two trials....I am just waiting to hear when they will run, and am frantically fundraising for them and I have put my name forward to be considered for the trial. Will update anything I get to know about the trials as and when I hear.... wish your dad all the best and just keep trying to fight it...one day...hopefully soon, we WILL get the breakthrough we all so dearly need.

 

[thelma313]

Jennifer, I am so sorry to hear of your diagnosis. I know there is nothing I can really say except that you sound like you have a very loving family and as a result will have a lot of love and support surrounding you.

On my end, I spoke with my Mom this morning and we have observed that if only one good thing is coming out of all this it is that we are all rallying together as a family and will surround my father with unconditional love throughout this whole process. Love can't heal ALS but it can heal sadness and instantly cure loneliness and if you're lucky enough in this life to have that, then you have the greatest gift of all.

You are in my thoughts.

 

[Flowerpot]

Hang in there

Hi Thelma

I am also a a newbie to the site as my Mum has recently been diagnosed - my sister and I have been feeling hopeless but today have a found a wonderful nursing home for Mum that we can visit each dayand help out with her care when we are there.

We had hoped we could care for Mum at home but the rapid progression has made that option unfeasible.

If it any consolation we are both in professions and have to have quite the British " stiff upper lip " but have both sobbed buckets of tears at the most inopportune of moments!

I do hope you can find the care and support you need.

kind regards

Flowerpot

 

[thelma313]

Hi Flowerpot,

You hang in there too! I am so sorry to hear of your mother's rapid progression. I'm sure that your daily visists bring her a lot of joy.

I sympathize with your "having to keep a stiff upper lip at work." I jsut arrived at the point now where I can actually get through a work day without sobbing in private but the first 2 weeks were extremely difficult. In fact I can say that finding out about my dad's diagnosis is the worst pain I have ever felt. I have lost all my grandparents and had other struggles in my life but this really does qualify as the new number one worst pain I have ever known. I just am so scared about what my dad will have to go through with ALS. I can't believe we aren't closer to finding a cure or even a better option that Rilutek which I have read can have horrible side effects. I really hope that more will be done for people with ALS. I know that I will do everything I can!

I wish you all the very best! I hope you and your sister are as close as my sister and me.

 

[Jennifer51]

Hi Thelma

I am also a a newbie to the site as my Mum has recently been diagnosed - my sister and I have been feeling hopeless but today have a found a wonderful nursing home for Mum that we can visit each dayand help out with her care when we are there.

We had hoped we could care for Mum at home but the rapid progression has made that option unfeasible.

If it any consolation we are both in professions and have to have quite the British " stiff upper lip " but have both sobbed buckets of tears at the most inopportune of moments!

I do hope you can find the care and support you need.

kind regards

Flowerpot

How I share your tears...I have sobbed bucketloads since diagnosis... I am only 56 with 2 lovely grandsons and another grandchild on the way...but then I get over the tears and fight on again..its all we can do EXCEPT do you belong to the mnd association...they have been fantastic, dont know what I would have done without them....and only a week ago, they sent an email to members telling about new clinical trials they hope to start shortly...I have begun fundraising in earnest for them, please email me direct if you need any help or pointers about them...Maybe you can share stuff that I dont know about....anything to make life better for us all.
[email protected]

jennifer51