29 female newly diagnosed

[amyezar]

We've elected not to tell our son until we absolutely have to. He's 6 and I want him to be 6. I am headed out to the Mayo Clinic in late November for my second opinion. I'm so nervous!

 

[ottawa girl]

Amy,

Some young families report the book "Stars that Shine" was a great introduction for the children. I hope you check out 'hope loves company' on FB . It's all about the kids and may be a good resource for you.

Good luck at the Mayo!

 

[FightingAttorney10]

I understand and I am sorry, as I was diagnosed at 25. However, I am here 4 years later with torso onset. Please realize ALS does not have to be "terminal" if willing to vent. I am going to be venting in a few weeks and we can indeed live decades with good care.

 

[amyezar]

I'm sorry, what does venting entail and what is quality of life after you vent. I'm brand new and not familiar with terms. Thank you for responding

 

[FightingAttorney10]

@amyezar, I am a controversial character at this forum and normally am a member of ALSTDI, which focuses more on therapies to try to slow the disease and in my opinion takes a much more realistic view of the medical system and discrimination that we face as Pals. I will tell you my personally opinion on the matter, and some may disagree, but I think "ALS SPECIALISTS", clinics, etc. are not worth very much when it comes to this disease. You are correct to assume that once they diagnose you, you become a statistic and the focus is on palliative care until you die. Many clinics do not even encourage Pals to vent, because they cite that it is such a burden on caregivers, expensive, annoying, etc. The quality of life you will obtain depends upon your progression speed, and at what time you need to vent. However, I have a newborn myself, and to me being in her life is worth a little bit of my sacrifice. Venting requires a tracheostomy, a simple incision in the anterior aspect of the throat region, and a ventilator machine. If you clean the stoma site and are very sanitary to avoid pneumonias, you can indeed live a very long time on a ventilator. Some will disagree, but with very good care decades are indeed possible. The average with mediocre care is about 7-10 years. I am a pro vent advocate especially for younger Pals, because we are no different than vent dependent quads who are not even considered to have a terminal disease. Simply because our disease is progressive, and they have a sudden injury, does not mean one bit of difference to me. In the meantime, I suggest that once diagnosed make an appointment with Doctor Jonathan Bach, in Newark New Jersey and he will explain all the different breathing options for you, and he focuses on keeping you living rather you treating you as a terminal statistic. If you want a dose of reality, I suggest you also join ALSTDI, it is not as compassionate as this forum, but you will understand the system better. Best Regards,

 

[udit318]

It just hit me that you live not too far away from me. If you don't mind me asking, where we're you diagnose. Were you referred to an ALS Clinic? A clinic would be a wonderful source of information and support for you.