Is this severe?

[thelma313]

Hi All,

Firstly, thanks again to all of you for your wise advice. You have all helped me tremendously
and I really appreciate it.

It has been a month now since my father's diagnosed and we are all coping a lot better now. For the first 2 weeks solid, I could barely keep it together. Now we are in fighting mode and my dad is being very proactive.

Today he saw another neurologist who confirmed the diagnosis and did more tests on him including another emg and a test to measure his lung capacity. My mom said the neurologist is one of the nicest doctors she has ever met.


This neuro determined that my father's lung capacity is"a little low." The percentage she gave was 51%. I thought that sounded more than just "a little low." I looked it up and 50% is considered quite severe. My dad will have to start using a BiPap at night now. I am worried. Is he progressing quickly? It's only been a month since the diagnosed? Also is this doctor being frank with us? I'm confused.

 

[joelc]

Hi, the one thing to keep in mind is this disease is different for everyone and there is no way to tell you what is going to happen and how quick. Even the FVC reading of 51% is different for everyone. But from my experience it is time for a BiPap. I got a tracheostomy and vent when I was in the mid twenties and it has glven me new life! The best advice I can give you is live one day at a time, don't think about tomorrow it will only rob you of the joy of today!

 

[CindyM]

Hi Thelma- I am glad we have been able to help so far. Joel is right: the PiPap will help and, unfortunately there is no way to predict things with this disease. I am Glad your dad is in a better place emotionally! :grin: Cindy

 

[thelma313]

Thanks

Thank you, Cindy and JoelC,
My dad is getting a BiPap and we are all glad that he is doing better emotionally. He is taking anti-depressants now. For the first week after the diagnosis he could not speak without crying. It was heart breaking. We knew it was caused by emotional lability and the anti-depressants are helping.
My problem is that I want to know more. ALS is such a baffling disease. We were all so shocked with the diagnosed. No one in our family or anyone we've ever known has had ALS. I read Tuesdays With Morrie years ago and that's all I know, other than that Lou Gehrig got it and Stephen Hawking has it. That's all I knew! But unlike other diseases, there are no "stages" or prognosis and everyone keep saying, "Everyone with ALS is different" which to me is good but also kind of bad because we have no idea when to expect what we know will happen eventually. It is scary! I commend all of you. Clearly this is an incredible test in human courage.
Thelma:?

 

[Al]

Hi Thelma. I got a Bipap in Jan of 05. They can really help with your breathing. Try using the search feature to get tips that you may find useful to help your dad adjust to the Bipap.

AL.

 

[thelma313]

Thank you, Al!

It is very encouraging to hear that you have been using a Bipap since 05.
I am reading up on it. My dad thinks he'll be okay. He says he doesn't have any claustrophobia and thinks he will adapt. He is getting his Bipap on September 23. He's also getting some sort of ankle brace. He can't flex one of his ankles.:sad:

 

[califsand]

Hi Thelma,

It is hard to swallow ALS, especially when the diagnosis is fresh. I read everything I could find, which wasn't as much as I hoped to find but if you go to www.ALSA.org, you'll find everything that is known about ALS there. There are two types, one seems to be a faster progression than the other... there ARE stages to the illness, for most people but it is not as clearly defined as with some other ailments. My father first lost his speech and ability to swallow, before being unable to walk. Some people lose the ability to walk first but are able to eat & talk for longer. There is a lot of inconsistancy with this illness and it really is hard for the Dr.'s because they can't predict what will happen next and when it will happen. Each day may bring new symptoms, or your Dad may have periods of being stable.... which is why, if you can, it is best to live one day at a time with the illness. That's easier said than done of course... I fluctate between living one day at a time and panicking over the future, even after watching my father battle ALS for over 6 years now!

I feel bad for the Doctors that have to cope with our patients because they have to confess that they don't have the answers and timeline predictions that we ask them for. With so many diseases there is a predictable pattern, a clear cut stage level, like with Cancer, where the Doctors can determine approximate life expectancy and base it on fact & experience. I cannot tell you how many times the Dr. predicted that my father had 2 months to live... and those predictions started 3 years ago. We are now at the final final stages of the disease and I expect him to be gone within a week or two, or it could be today, tomorrow or somehow, miraculously, he could hang in there until Christmas... when I think too much about it I start to freak out a bit so I try not to.

That's the best advice I can give... try not to think about the future except for what comes soon, if at all possible.

Take care,

Sandy

 

[thelma313]

Thank you Sandy, I just noticed your post today!

Thank you so much for all your advice. I clicked on the link you provided and read everything I could find. My mom has been doing a lot of research too. ALS is so overwhelming! I want to know everything about it and at the same time I wish I knew nothing about it. I don't know if that makes sense. Maybe it was the same for you? I feel like I have to know everything but the more I find out, the more outraged I become that A. This disease even exists! B. Why is there not more treatment for it? and C. Why is there so little awareness out there? On the one hand I wish it had a clear cut progression with stages like Cancer but on the other hand I don't want to know how long my father has.

I want to do what I can and my father has made it clear that he wants to fight hard. He has radically changed his diet, he is taking anti-depressants and several vitamins, doing speech therapy, on a Bipap at night and he is exercising 20 minutes per day.

We are all determined to live one day at a time however challenging that may be.

Sandy, my heart goes out to you regarding the situation you are facing right now. I am encouraged that your dad's diagnosed was 6 years ago. I hope my dad has a slow progression. I am still in shock and have to pinch myself that this is what he has. I am betting it's still the same for you. You are in my thoughts! I hope you have a loving support network around you...

Wishing you all the very best,
Thelma

 

[joelc]

Hi Thelma,
I am so glad that your dad wants to fight this monster. That is very encouraging to me, as I too am one who is going to fight this and do everything I can to live a long, happy and productive life! There are quite a few people still living after having ALS for over 20 years and I plan on being one of them and your dad could too! I personally don't think ALS has to be fatal! With the technology we have today we can live for a LONG time if we are willing to accept that technology. I have had ALS for 3 years and am currently in a wheelchair, have a feeding tube (PEG) and also a tracheostomy and vent. I plan on being around to see my grandchildren grow up and have families of their own.
With your love and support, and your dads cooperation he can too!

God Bless you all as you adjust to this reality.

 

[thelma313]

Hi JoelC,
You are very encouraging to me as well. You have an amazingly positive attitude and I personally believe that is the most important weapon in "fighting this monster." There are so many wonderful statements in your post that are quotable but my favorite has to be "I personally don't think ALS has to be fatal!" I agree!
I have every confidence that you will be around to see your grandchildren grow up and I have a feeling my Dad will live to meet his first grandchild (whenever that may be )

Of course my Dad will have all my love and support! Dads are the greatest!

God Bless you too, JoelC! Soldier on!