Diagnosed over 5 years ago?

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Danijela

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Joined
Dec 3, 2008
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667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
I am curious about how many people on this forum have been diagnosed for longer than 5 years? And if you thought, back at the time of the diagnosis (given the old 2-5 years scenario) that you will make it so far?

Hoping this may become one of the 'stories of hope' threads.

Dani
 
My PALS was diagnosed 8 years ago, and yes, he was given the 2-5 year scenario. But he wouldve passed a little over 5 years ago if he hadnt had the trache done. I do know that he is glad he chose to be trached because on most days, he still wants to live. Its just been the last couple of months that he hasnt been feeling well, and so much so that he would rather die than feel this way. But generally, he is happy with the choice he made.
This is why he is my hero. He fights everyday to live and to have a good attitude towards life. Ive learned so much from him, just watching him struggle through things. It is definately amazing how much strength our PALS really have, even if they feel like they have none. Thank you for starting this thread, Dani. Im excited to read others stories.
 
I've been diagnosed 7 years next week. I thought I'd be dead in 2 the way my luck was going back then. In a chair, just starting to have eating problems. Still can hold a glass of wine and feed myself if it's cut up. Use a Bipap for sleeping since Jan 05. One finger typing, so I guess I'm doing ok. Many think having this forum has kept me alive. Some days it's made me want to do myself in to get away from the nutbars that won't take NO ALS for an answer but that's a story for another day.

AL.
 
I was diagnosed 5 years ago and given 2 years to live. So I have been dead for 3 years! LOL. If it was not for my decision to get a PEG and a trache/vent I would have been dead in that time frame. I have never regretted my decision to stay alive as long as I could. I have been here to enjoy the birth of 2 new grandchildren and there will be 2 more early next year. It has been a worthwhile experience. This forum gives me a purpose to keep going, if it was not for this forum it would be a lot harder to find reason as it fills my day.
 
It will be six years next week for me. My children were 8 and 13 at the time. I thought life was over and despaired for my children.

Then I got over it and started adapting. My son is now a sophomore in college and my daughter is in high school. I've been in a wheelchair for four years and cannot move below my neck. But I can eat and drink anything I want and I operate my computer with Dragon NaturallySpeaking. I still work when I feel like it. Just started sleeping with a bipap last week. (BTW, my lung capacity is 20%, and the RT looks at me like I should be dead. The numbers mean nothing.)

Those of us with a slower progression are blessed, and it's not nearly as bad as we think when we are first given the news. To those who are recently diagnosed: life is not over, it's just different. Adapt and you will still share in the most important things life has to offer. God knows it's not easy, but that makes it all the more rewarding. Frankly, at this stage of the disease I spend more time thinking about what I have accomplished than what I have lost. Try not to focus your energy on fighting this disease. That is a fight you cannot win. The battle is taking place in your mind and your spirit. That is a battle you can win.
 
Thanks all for sharing...very encouraging! JohnKelly, appreciate your insight and focus on what you can control...I have found that focus to be very difficult maintain on a daily basis...as my physical side comes quickly crashing down around me.
 
Thanks all for sharing. Hope we can get a few more contributors. My partner is coming to his second year of diagnosis, third of onset of symptoms, and I am hoping he too reaches and passes 5 year mark.

Dani
 
Hi Dani,

John Kelly (above) expressed my own view very well. I will have been diagnosed 10 years next week. I spent the first several years living in the 3-5 year scenario and finally realized that I had slower than average progression and that one's progression rate is an excellent predictor of future condition. After a couple of years, my position on the ALS-FRS scale was showing that I was much slower than average and in hindsight, I should have used that then to plan my life differently than I did.

If you really want to know how you are doing relative to other PALS, then measure yourself on the ALS-FRS using an on-line calculator that plots not only your score, but shows your location on a time-score graph relative to averages. It measures progression from symptom onset, not time of diagnosis. Be warned, if you have fast progression this measurement can be discouraging.

John
 
it is 12 years for me. I was diagnosed in September 1998. Never imagined that I would last this long! It is because I have 24/7 nursing care.
 
Tom is working on year 11.
I can remember how hard it was to tell the children, and at their despair said "no one knows how long this will take, daddy may see you graduate school, maybe even get married." Gord has graduated college and has started his career and Katie, then in kindergarten, is now in grade 10.
Tom is still going, not strong, but as yet without assistance of any kind.
Maybe there is something to smokin' cigreets and drinkin' beer because he is really good at it (lots of practice)
 
john kelly, I just wanted to say thanks for your profound words of wisdom and hope!

"To those who are recently diagnosed: life is not over, it's just different. Adapt and you will still share in the most important things life has to offer. God knows it's not easy, but that makes it all the more rewarding. Frankly, at this stage of the disease I spend more time thinking about what I have accomplished than what I have lost. Try not to focus your energy on fighting this disease. That is a fight you cannot win. The battle is taking place in your mind and your spirit. That is a battle you can win."

I have writen them down and am reading them in the morning during my prayer time with the Lord. It sets me on a right path for the day.
Thank you for sharing and God bless you!
 
Wow all of the above is so inspiring! I was diagnosed in June but had symptoms since Aug 09. In June the Doctor made it sound like I'd be dead soon, but I have had very slow progression, still mostly speech and a lot of mucus. I since found out I also have two autoimmune disorders, so I'm hoping Neuro is wrong. I've had two emgs that showed denervation. The doctors I have have never seen someone with both, so they are watching and waiting. I would just like to know for sure. But I live every day to the fullest and still walk and drive, etc.
God Bless you all
 
These are really encouraging posts, thank you! My husband has had symptoms since Dec 08, but a very slow progression; currently only his left hand and arm are affected. Interestingly, he too has had two autoimmune disorders (for more than 10 years) and some things we have read do link autoimmune and ALS. It is truly a very curious disease and I am starting to believe that the cause(s) are so varied and complicated, they may never be clear. Ultimately, what caused it is irrelevant, anyway, because all one can do is deal with it. What is important is that there is hope, and life, and a life worth living. And we as partners and caregivers can be instrumental in making that life worth living.
I am trying to learn all that I can because my PALS has expressed that he will never be a person unable to drive or in a wheelchair or with a ventilator or....and in future I want to be able to help him see that there are many kinds of life that can be worth living, but he is not there yet...
 
It has been over 10 years ago for me. I can still walk, talk, and eat.
 
Usually no ALS diagnosed unless it is in arms and legs, that's what my near said
 
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