Status
Not open for further replies.

jcmatch

Member
Joined
May 9, 2017
Messages
14
Reason
Loved one DX
Diagnosis
05/2017
Country
UK
State
London
City
London
My husband finally had his diagnosis of Bulbar Onset confirmed last week and we are naturally devastated. Whilst he wants to know nothing about what might come next and when, I feel i really want to know everything and need to know what to expect. I have read many posts on here and everyone is so encouraging and helpful, i hope you don't mind me asking these questions.

I do appreciate that every case is different and everyone progresses at different speeds, but if anyone can give me their experience of timelines for complete loss of speech, swallowing and breathing issues I would be very grateful.

My husband started slurring his speech back in December 2016, 6 months later he is still talking and very understandable but slurring more and talking slowly (slightly robotically). He has had no issues so far with swallowing, choking or breathing. We are planning a family holiday to South Africa in September and then hoping to go to the Caribbean in the new year, but i'm not keen on booking anything more than 3 months in advance at this stage.

All help and advice will be greatly appreciated. Worse case and best case will give me some clues.

Thank you all.
 
Hi there Jc match, I was diagnosed 4 years ago and now speak very poorly, I have a tube but I only use it for taking meds twice a day, I can still eat normally with no problem. I seem to have got that ability back because at one time I could not that's why I have the tube.
I now walk with the aid of a cane or a walker but other than that I feel fine, no pains or any other ailments. This is one offal disease to have but if your husband has it hope it is like mine, seems easier to live with than some others.
So sorry to meet you here but we have to make the best of a bad situation.
Al
 
Sorry to welcome you here. I have learned a lot here and I am sure you will as well. I also started with slurred speech over two years ago. For a year, that was the only symptom I had. Then I started having some swallowing issues. I was diagnosed at the Mayo in Dec 2016 and at that time I could still eat anything (though occasional choking esp. on thin liquids) and my speech was still understandable. I did eat more slowly and would get tired before I was full. I did notice some weakness in my legs also the first of this year and got tired out easier. Over the next few months, I lost 30 pounds. I have also lost the ability to speak now. I decided in June to get a feeding tube put in. My weight has now stabilized and it is no longer difficult to get all medications and needed water. I went on a cruise in Europe 10 days after having the tube put in and had a great time. I am still mobile but do get tired easier. So far no cane, walker etc. I still play golf once a week but am good for nothing else the rest of the day. I do wish I had gotten the feeding tube in a little earlier rather then the struggles I had with medications and hydration. I have more energy now but am learning to pace myself! We still intend to take cruises but make sure we have trip insurance that covers pre-existing conditions.
 
As you said, everyone is different so timelines are very individual, but if you can use them to anticipate what might be coming next and plan accordingly. Preparedness is everything with this disease...

My PALS started showing symptoms in December 2014 when he was giving a talk at work and could not pronounce a word. In April 2015 I noticed a change in his speech at the end of the day when he was tired - he sounded a little drunk. He was diagnosed in May 2015. His voice became harder and harder to understand until he stopped talking altogether in September 2016. He stopped eating and drinking by mouth around November 2016.

Good luck and sorry to welcome you here.
 
Thank you all so much for taking the time to reply to my post, i have found it all very re-assuring. I understand that every case is different, but i have been panicking that he will lose his voice before our daughter comes back from travelling later this year and have been praying this will not happen. She has no clue and we don't want to have to tell her and spoil her trip if we don't need to.

I understand why the doctors won't give more information on timescales, but what you have told me gives me lots of hope that we may have another year to at least have some decent holidays and make some more memories.

My thanks again and I'm sure we will be speaking soon. Take care of yourselves.

JC
 
Welcome and I'm very sorry about this diagnosis.

You can't go by another's experience, as it is so individual. You have heard from some of the slow progressors here and that is encouraging. Generally bulbar onset is more rapid than other onsets but again this is only a general statement, there are many long surviving bulbar PALS too. At the diagnosis stage we have no idea which will be which. Sometimes we can see someone is progressing rapidly and they suddenly plateau!

My husband was bulbar onset. He was diagnosed about 9 months after his slurring started and he passed away 11 months after diagnosis. Within a year of symptoms most people could not understand anything he tried to say. He had swallowing issues start at the same time as speech issues. He lost his arms next, then breathing compromised, then his legs. He was still just managing standing transfers from a chair to the week he died but was hoist transfer most of the time.

Please realise you are in shock just now and just be kind to yourself as you absorb this diagnosis and the impacts of it. We want to know what is going to happen to feel some control, I know this unknown factor was one of the hardest parts for me.

Taking some holidays is a great idea - make all the wonderful memories you can and give him as much joy in life as you can!
 
Welcome, you have found a great place for answers and support.

My PALS has Bulbar Onset ALS. He started with slurred speech in July '14.
He was diagnosed in Oct '15. At that time his neurologist also noticed slight weakness in his ankle area.
Probably Aug or Sept '16 is when his speaking ended.
In Sept '16, he had the feeding tube put in. He was still eating by mouth but started losing weight rapidly.
Oct '16, he was having a really hard time holding his head up as well
Dec '16, his hands started to really give him trouble like with water bottles, door knobs and keys
Mar '17 he started using Trilogy all night every night
June '17 his breathing took another turn for the worse and he started using the lift recliner and walker full time
July '17 he is still walking with a walker but it is scary and needs help getting up alot

His neurologist told us in the beginning that his seemed like slower progression. Like you said, everyone is different.
 
Thank you once again for your personal replies, all individual experiences give me a much better picture of what to expect, i know it isn't scientific but it all helps!

I think we will just try and pack as much in as possible in the next 6 months and keep praying that he is a slow progressor. He has fasciculations all over his body and cramps in the night in his back. No weakness and still very active.

I think the mental torture is worse, knowing that it will get you a piece at a time.

Regards
JC
 
Hi Jcmatch,

My husband was diagnosed in December of 2016. He began with a raspy voice in May/June of 2016. He started slurring quite a bit in September of 2016. His strength was fine at that time with some balance issues and heaviness in his legs.

In October of 2016 (the beginning of the diagnostic process) he began having drop foot on both sides and more difficulty walking.His hands and ankles have become very weak and his speech is pretty much unintelligible. He does well with solid food and uses thickener for liquids. He uses a rollator, but is very slow and often needs help standing up and can only climb a few stairs with assistance.

He has fasiculations everywhere but not really much atrophy except his hands. His neuromuscular doctor has called him more "upper motor neuron". Hope that helps some!

Jennifer
 
Status
Not open for further replies.
Back
Top