Status
Not open for further replies.

Spangun

New member
Joined
Apr 2, 2014
Messages
1
Reason
Other
Country
us
State
kz
City
turkmenistan
It's been a weird 24 hours. 36 hours ago I was on a flight home to Canada from the UK for a little bit of relief from exam time (I study Law there). Biggest worries on my mind at that time were "hope my pinky heals from a fall I took while in a hurry", and, more importantly: "when, how, and to what capacity will I be conducting my exam preparation." HOWEVER, every aspect of my concerns changed a bit monday morning. After my dad went to work, my mom came to the tv room and said "we need to talk." At first I thought she was going to say she found a bag of somethin somethin in my room from last time I was home (but then i remembered 'nah I would've finished that shit off for sure'). But no, she had full out news for me, and it was, as she continued, "about your fathers health." That's when my heart started beating uncontrollably. See, he'd developed a slight speech impediment about a year earlier, and since then, I had done some intensive internet research, but still I somehow swiped ALS to the margins of my scope consideration. My mother then explained to me that after ruling out many other neuromuscular diseases, the neurologists had concluded that it was, absent of the very unlikely exception of some jewish (we're of jewish descent) disease...ultimately ALS.

Her next words to me consisted of something along the lines of "Don't let this affect your life in any way, we want you to still stay in school."

...i'm sorry but that's a bit of a tall order. I guess that in the two weeks that they've been dealing with this, they've somehow come to the conclusion that my brain is made of steel and that I can make it through my first year law exams having to contemplate whether my father, who is only 53, will first lose his ability to speak, or his ability to walk...They're wrong. They're in denial.

I have two frightening and disturbing images in my head. One is my dad in a full-out-body wheelchair, the other is my mom alone in whatever smaller depressing house they'll eventually decide my dad will die in.

The point is, I clearly need help right now, from people outside of my family, and from what i've read, you seem like amazing and strong people, and I look forward to whatever help you guys can provide me. thanks.
 
>I guess that in the two weeks that they've been dealing with this, they've somehow come to the conclusion that my brain is made of steel and that I can make it through my first year law exams having to contemplate whether

This is a diagnosis that takes more than weeks to adjust to. For me it's been over a half a year and the insanity cycle goes on…

You can make it through your first year law exams. It is important to you and also to them. We all have our own jobs to do like it or not and we must do them.


>my father, who is only 53, will first lose his ability to speak, or his ability to walk...They're wrong. They're in denial.

Well, we are all in denial :).

Understand that the progression of ALS is different for everyone. There are people in these forms have been dealing with this for 20+ years. Now is the time to live life not live ALS.


>I have two frightening and disturbing images in my head. One is my dad in a full-out-body wheelchair, the other is my mom alone in whatever smaller depressing house they'll eventually decide my dad will die in.

Well he's not there yet. :)


>The point is, I clearly need help right now, from people outside of my family, and from what i've read, you seem like amazing and strong people, and I look forward to whatever help you guys can provide me. thanks.

You sound to me like a good kid. It's hard to figure out what the right thing to do in life (in general) … With a situation like this it's really impossible.

If I were to try to advise my children on how to deal with me or my wife Sandy at the two or three weeks stage, I would probably tell them to say "I am here for you and I will do my best to not let you down".

At least I think that's what I would advise :).

FWIW :),


Max
 
Hi Spangun,
Welcome to the forums. You will find a great deal people from all walks of life and experiences. I was your fathers age when I was diagnosed with ALS. He will be meet with some of the greatest challenges of his life. I know you are going through a whole host of emotions and even fear. Share your hopes and fears with your parents. Do not put your life on hold, you have a great life ahead of you. Work hard and study hard, make your dad proud of you. That will be the greatest gift you can give him. You are his son and always will be. He will need you in ways that might surprise you. Hang tough gain strength, passion and understanding I don't if this helps I hope it does.

Oh and one more thing. Your underwear drawer and under your mattress are the first places we check out. Believe or not but we were once your age.

Patrick
 
The ALS will not affect your dad overnight--so the best thing you can do for him is finish up those exams and do your best. probably would have been better for them to tell you after the exams but what is done is done.

Yes things will get bad for both him and your mom, but again it will not be overnight. do not dwell on what is coming because you may have a general idea but there is a lot of life to live ahead, and he could be very slow progressing you never know. The first few months are emotionally the worst for everyone. I suggest you find a counselor to talk with and be there for your dad and mom as much as possible.
 
Ditto all that -- he will feel much better knowing he is not holding you back. We all feel better when there are some things going right. Face the images. Let them play out in your head. Make sure you are in them. Many of the people reading this are in "full-on wheelchairs" and want to die at home surrounded by family. Many such are still living, not dying. It's easy to confuse having a fatal disease with actively dying. These are not the same. Don't bury him until the exact day that he wants you to (which you will know).

Know that you, too, will do your best as the disease progresses, to be there for your parents. You now are fairly sure how your dad will die, but you don't know when and how. You can't affect the when as much as the how. Control what you can and commit to living the best life (like becoming an awesome attorney) and being the best son that you can be. I think what your mom might've meant is that, done properly, these two become the same thing.
 
Don't quit school whatever you do. Your parents want the best for you. You will get alot of support from this forum. But, I would also recommend that you see a therapist. It has helped me cope. I am not try to push drugs but you might need a low dosage on a antipressant for at least awhile. Please be open to that if your doctor suggests it.
When my dad was diagnosed I was terrified and frankly feared he would pass away in months. It will be two years in May since his diagnois. He can't run a marathon but he still has a good quality of live. There will most likely be alot of good days yet for your dad. Try to live day by day. None of us know what the future hold. Who knows we might be struck by a truck or something ourselves.
Is your dad a veteran by chance? They provide great benefits.
I am not my dad's caregiver so I'm not as knowledgeable as everyone else. But, if I can be of support in anyway please let me know. Be strong! Kim
 
I am 50 years old and was diagnosed in September last year, I have two children, both in college. My son will graduate in May. My daughter is two years away. Both are continuing to create the steps to their futures successfully. Job interviews and scholarships, deans lists and apartment hunting. I'm planning to work as long as possible. Life moves on.

Find someone that can help you through this rough time. For my daughter and I that has been our pastor. Keep in touch with your doctor, and ask for his help if the feelings get hard to control.
 
Status
Not open for further replies.
Back
Top