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-- My father was diagnosed with ALS
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My father was diagnosed with ALS
So...I just finished school and was starting to look for work. I knew my dad had been having some balance issues lately and knew something was up. There were a number of reasons why it couldve been happening *and a medication he was taking was a suspect..one I hoped was the cause*.
Well HE wasnt so lucky. Hes got ALS. (or Lou Gehrig�s disease as most will know it as)
Amyotrophic lateral sclerosis
is a chronic, progressive, almost invariably fatal neurological disease. ALS is marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. The disorder causes muscle weakness and atrophy throughout the body. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away (atrophy), and have fasciculations because of denervation. Eventually, the ability of the brain to start and control voluntary movement is lost. However, even patients in advanced stages of the disease may retain the same intelligence, memory, and personality they had before its onset.
The average person lives about 3-5 yrs after diagnosis.
There is NO CURE
It can progress anywhere from slow to fast(and anywher in between) and there is NO WAY to tell how it will go for anyone. It could be quick or he could live 10+ yrs. Stephen Hawking has this disease but he was diagnosed young and typically if diagnosed young you have a much better chance of living longer. Plus hes got lots of money so he can have the best care and aids all the time.
It basically boils down to being trapped in your non working body. Involuntary reaction like going to the bathroom is still able to be controlled, but you cant get up to go to the bathroom... Your eyes and eye lids will still work. You will lose control over your breathing and will end up on a ventilator. You will also lose your voice. And thats the biggest thing for my dad as he likes to talk a lot and it will be hard for him not to be able to communicate EVEN if he gets one of those expensive computers to talk for you(you use your eyes to select letters and type out what you want to say).
I went to visit to take a break from just finishing school (and also for him to give us the bad news). The first few days , we didnt do much but just sit around and be upset about it. It was a huge shock. Various thoughts rush through your head. At least it isnt some bad cancer and he has 2-3 months left to live, but it still is difficult and having a general timeline of when you are gonna lose your father sucks in many ways! (It also sucks that you have no idea how it will progress)
The disease itself doesnt necessarly kill you though. Many people die from other illnesses(like pneumonia). Some people choose to unhook the ventilator because they woudl rather not go on living like that....and at this point I think my dad may want to do that and thats a huge bummer. 
Itll be tough not being able to golfing with him or do other physical activities which we like to do . Its especially tough on him. He played college basketball and was a very good hockey player. Loved to ski, golf, bike ride etc.
Along with this , there is so much other stuff to do to prepare for this. He will probably find it hard to work in a year and thus will want to spend his energy wanting to do other things while he still can. (although his plan is to stop working sooner).
I dunno, after the initial week of grieving we kind of put it out of our minds so we could still get normal stuff done. We have lifes to live (incl him). Its just gonna be hard living it without him around.I want him to be able to hold some grandchildren
He had a heart attack a couple yrs ago and that was a wake up call for him to take some better care of himself and he was doing so and doing well...and then this has to happen. wtf. Not to mention my mom went through breast cancer just before his heart attack.
Go give your parents a big hug!
Re: My father was diagnosed with ALS
| quote: |
| Originally posted by Euphorica Go give your parents a big hug! |
Words cannot express the feelings this has just evoked in me for you and your family.
I hope that in this time, you make plenty of wonderful memories and laugh as much as your aching hearts allow.
xxx
Damn man...so sorry to hear that
| quote: |
| Originally posted by English Rachel Words cannot express the feelings this has just evoked in me for you and your family. I hope that in this time, you make plenty of wonderful memories and laugh as much as your aching hearts allow. xxx |
I'm really sad to hear this.
I hope and pray that you, your father and your family find the courage and strength to get through the difficult times and challenges that your father faces/will face with his condition.
i'm very sorry to hear this.. i can't imagine what it must be like to go through something like that. all the best to you and your fam.
| quote: |
| Originally posted by sticky_shoes I hope and pray that you, your father and your family find the courage and strength to get through the difficult times and challenges that your father faces/will face with his condition. |
Although at first the news is devastating, these things are handled within a family and never once is the person alone in their battle. There's a profound appreciation for life and a lot of the smaller things in it when you go through something like this, and even though right now I know you cannot see that.. it will come in time. It's not something you're ever really going to be able to explain to someone who hasn't gone through it themselves as it changes your entire perspective on life. Terminal illness is such an indefinable thing because no matter how smooth and rich in memories you make the process, there is no ignoring the outcome. I'm so sorry to hear this has happened within your family and if you ever want to talk or vent to someone who has been there please know I'm willing to listen. It's probably going to sound really cheesy but that whole 'every man dies but not every man really lives' has gotten me over many days of being angry at the world. I don't really know what else to type here except to tell you that you will get through it as a family.
I'm really sorry to hear about that. May you all have the strength and courage to get through this ordeal.
I'm deeply sorry to hear this
My uncle died from this in February 2005. It's heart wrenching to watch someone deteriorate right before your eyes.
All I can say is get out and do everything you can while he can. Because the next few years will go by very, very fast, and be filled with a lot of pain and heartache.
My best wishes go to your father.
my condolensces
flipped you a pm.
I'm really sorry to hear that John. My prayers are with you and your family. As hard as it is, try to stay smiling and think of something positive everyday. Cheerish the moments you have with your family while you still can.
deeply sorry to hear this
stay strong!!
prayers to you and yours....
no one deserves stuff like this.
My condolences to you Jon. I lost one of my aunts to lymphoma 5 years ago. You get over it though.
For now, keep your chin up and hope for the best.
really donno what to say.
But as problems like this occurs we make ourselves stronger.
That's all matters
*hugs*
so sorry to hear about this...I can only imagine what you are going through.
I am so sorry to hear about this. It is extremely difficult to try and stay strong, while watching someone you love go through something like this. Do not hesitate to go to your friends or family if you need someone to talk to.
Very sorry to hear about your father. i hope your family has some financial resources to use the next few years to do all the things you have wanted to do together. Travel, learn, experience new things and fulfill all of his life long desires. My dad passed away when i was 12, i still miss him but time heals all wounds. Best of luck to your dad and strength to the rest of your family.
On a lighter note, you know what to do now:
2-seater rocket powered dragster.
i had a brother who died from muscular dystrophy. We watched him deteriorate over 20 years. I complete relate to your situation and extend my sympathy. But being someone who has been through it, i can sincerely tell you that you and your family will feel happiness again throughout his sickness, and even after it..... like mine has.
thank you all for the kind words and thoughts!!!
I dunno whats worse at this point....having him die or watching him start to detriorate and have to suffer through it.
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