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arls

New member
Joined
Apr 29, 2011
Messages
2
Reason
Loved one DX
Diagnosis
01/2011
Country
UK
State
Gloucestershire
City
Lechlade
Hi All
I am a new member. My husband was diagnosed in early January with ALS bulbar onset, and we were told he has 2 years to live. Massive shock obviously. He has worked in Formula One for 35 and now Moto Gp so has always travelled a lot. He is still working, but this disease seems to be progressing very rapidly. He started with slurred speech and now has no feeling in his tongue and swallowing is becoming difficult. His left arm is very weak and now his right is getting weaker. I feel so helpless. He is coping very well, but his job involves lot of communication so dont know how long he can keep travelling. Our eldest son (22 years) or myself are going with him when we can. Can anyone tell me how quickly this can progress? Does it level off at all? We are under a great team of experts but they wont give me any timings and I want to make sure we make the most of the time we have together. Any information or help would be greatly appreciated.
 
Sorry to hear you are here, but please feel welcomed. There are many amazing people here on the forum with advice and support. I was diagnosed in February 2011 and I'm still learning as I go too. My advice is to follow that first idea you had and enjoy time together.
 
sorry about your husband!

The experts won't give you "timings" because they don't know. ALS is so different in each person!

I wish you much happiness and many memories in the coming years. Make the most of them.

(By the way, my husband was diagnosed with bulbar and limb onset at the same time and he's still here! He passed the "finish line," the doc gave him.)
 
Hi, arls.

Welcome to the site. I'm sorry to hear about your husband's diagnosis and of your need to join us here.

To answer your main question, nobody can give you a definite answer as to how fast your husband will progress because each patient progresses differently and the only way to know how fast a patient will progress is to wait and see how fast that patient does progress. After a few months, you and the doctors will have a general idea of fast or slow, but where the disease will pop up next will remain a question, until your husband runs out of new places to progress.

Not what you wanted to hear, I'm sure, but there really is very little about this disease that anyone really wants to hear.

The best rule of thumb to follow is: Don't wait! Things can change radically in just a few weeks when mobility is involved. Modern technology can assist in dealing with some issues but only if you have it available when you need it. Assuming that things six months from now are going to be just a little worse than today is very risky.

Once again, welcome to the site and I'm sorry you have to be here.
 
Welcome to the group! I am sorry you are here as well. I don't know much except what I have researched. My Dad was diagnosed in January as well and seems to be about the same rate as your husband. Enjoy the time you have with him.
 
So sorry your husband has been diagnosed. My husband was diagnosed a year ago with bulbar onset and it quickly progressed everywhere else. Please don't waste anytime and do all the things you want while he is still easily mobile. If he will, record his voice - ask him to make recordings for future grandchildren and milestone events. My husband hasn't done it yet and his voice is very weak now.

Hope your husband progresses very slowly. When did his first symptoms start?
 
Hi

Thanks for your reply- its good to speak to someone going through the same. Charlie had his first symptons around September/October 2010. His voice is going fast- he has tried and started recording using Model Talker software but may be too late already. Our 22 year old, who sounds almost the same has offered to do it for him which may be a better option.
It does seem to be progressing very rapidly which is quite scary- voice, difficulty swallowing, left arm almost gone and now right arm weaker and legs twitching.
We are trying to remain positive but it is hard Im sure you are feeling the same. How quickly did it go to your husbands legs?
keep in touch
 
Oh how sweet, you son doing the recording for his father. That gave me chill's. I love that. I am the one who is sick in our family, but my son and husband sound so much alike, and I think that would be one of the most kind and courageous things a son could do for his father. Welcome to our community, sorry you had to find us. Progression is variable, nothing ever concrete or very easy to guess.
Just try to stay one step ahead of this thing is the best advice I can give.
 
I am so sorry for you and your family. Like everyone else has said, if you can, get your husband to "retire" and enjoy the time he has.
 
Each day is a gift for any of us. Take advantage of it and love each other.
 
Hi glad you found the forum but sorry for the circumstance, my basic input is
1. Listen to the people on this site because they will tell you what arse covering doctors won't (both good and bad).. For example they should have explained that ALS isn't a predictable disease and for them to give you a time limit is frankly just irresponsible.
2. That being said time is certainly a factor and if there's stuff you have always planned on doing you should have left yesterday, and if things are going well when you return then consider going back to work.
3. Live in the here and now (Boring old cliche but completely relevant).
Be well,
Dale
 
Re: new member needing support

Hi there, I to am a new member, my best friend got ALS in November 2010 it has progressed so fast. Just like your husband, it started with slurred speech, then no feeling in her left side. Now she uses her iPad to type in questions or replies, and the computer talks for her. I just found out tonight she needs to be put on a feeding tube on Tuesday! I am just so sad and feel so helpless. I am putting on a Newport Bay Cruise to raise money to fight ALS. Date and time to follow, we all need to support each other. I am just so sad. : (
 
Right after Phil's diagnosis he began having simultaneous weakening in his right hand/arm and left leg - with the other limbs trailing right behind. He had a feeding tube put in June and started using the wheelchair for lengthy walks in Nov. He also began to use the feeding tube at the end of November. (One thing that weakened Phil during that time was a removal of a kidney due to cancer - it is believed his ALS is caused by the cancer) The ALS doctor gave us a 3-6 month prognosis in January (if things kept progressing at the same rate) but progression has slowed some. He has lost almost all use of his right hand now and can only walk for about 20 feet. Breathing is labored but he won't use his bipap - probably due to the FTD he also has - he just doesn't grasp the importance of the BiPap.

I would still get as much recorded as you can - and as soon as he can stop working the better. Make every day count. Last summer we took a 3 week vacation - I felt like it may have be our last "normal" vacation and unfortunately was right.

Stephanie
 
Hello. I am so sorry about your husband. The posts that tell you to enjoy your time are so right. I lost my only sister to ASL, and spent the most memorable time with her after her diagnosis. It's been two years now, but I am angry and looking for answers. I am trying to contact people or families of people with ALS, to see if there are any common denominators that may have caused their ALS. My sister was taking Lipitor....and would like anyone else to respond if they or their families took Lipitor.
I will pray for your husband and for you to stay strong , enjoy your time together.
Jodi
 
My advice would be not to put off things that your husband enjoys. If you think of it today make every attempt to do it tomorow befor his mobility becomes an issue. If you think of somthing delicious to eat make it and don't worry about stupid little things like calories and fat. Make it and eat it because it's somthing to enjoy!

My father was diagnosed in November of last year but nobody ever gave us a time line. Your doctor might have given you an average as to what he has seen among ALS parients. 2 years is a very grim outlook but the statistics arn't much better they say that 90% of pals die within the first 5 years but there are plenty that live beyond that.

I think the trick is communication, know what your husband wants and likes, talk about everything before communication becomes difficult for him and enjoy each day. There will be bad days and good days but every day you get to spend together is a gift. Enjoy every minute of it.
 
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