Have you tried something that has slowed your progression?

[Zaphoon]

C.J., My daughter that's a senior in college will be testing in Savannah on Tuesday. She will be taking the test at a testing center for grad school entrance.

I'll probably spend some time on River Street while her test is going on.

[indigosd]

Zaphoon, CONGRATS to your Family, that is a huge accomplishment and you should be sooooo proud! I second CJ, tell your SIL thanks form South Dakota for his service. I went to an incredible Thai Restaurant years ago in Atlanta-wish you would go there for me! I think it was in the Gay District and it was by a huge mall!!

Deborah, congrats on your soon to be PEG. Web has his on the 15th of December. If you want, you can search the forum and there is a lot of fabulous advice about how to prepare and how to take care of your PEG. We are going to an Endoscopy Clinic for the placement. He will have a preop history and physical-blood drawn to check his CBC and possibly his clotting time due to his VIT therapy that may prolong bleeding time. We will meet with a Nutritionist, Home Care Nurse and a Social Worker prior to the procedure. Remember to be Nothing by Mouth after midnight and do NOT stuff yourself afterwards or you could end up like sadiemae's husband. About the RILUTEK. It cost us $1088/month. The usual dose is 50 mg by mouth twice a day. Web tried it for 3 weeks but he had such horrid side effects that he decided to not continue. Some PALS have had no issues taking it. It is suppose to "prolong your life by three months" but may have longer neuro protection properties. Are you going to a ALS Clinic, have you contacted your ALS Association and MDA? I too am puzzled by your need to return to a regular Neurologist to get a dx that you already are aware of...? Good job for axing the CPA! As far as the speech and the comment from Pharmacist [?] SHAME ON THEM! CJ told me about the cards that she made for her Husband-I did it for Web and it really helps him when I or our son are not with him to be his voice. Web is always so embarrassed when people make comments or look at him like he is a walking drunk. I tell him to live it up-he can say anything he wants, even curse because most of the time they don't understand him anyway! lol Have you noticed how people will talk slower and LOUDER after you tell them it is ALS that is affecting your speech?! Like he is mentally dull or something grrrr makes me so angry!

[BarryG]

indigosd, you would not believe what I have said to some people. Of course they have no idea what I am saying, it is like swearing at someone in my own personal language. As long as you have a smile on your face they will never know. I went to the pharmacist to get my prescription renewed and had forgotten my talker so I was writing notes and my pharmacist was writing notes back to me! And this is a guy I have know for quite a long time.

[Blubear]

So, I am hearing Rilutek loud and clear, but isnt there anything else out there that any of you have tried that you think has helped slow the progression? Vitamins? Clinical trials? Detox? What are you taking and why? Collectively I think we can help each other by posting what we have tried and failed at, and what we are taking for good health and why....make sense??
Hugs,
Blubear

[tdamess]

Originally Posted by BarryG

indigosd, you would not believe what I have said to some people. Of course they have no idea what I am saying, it is like swearing at someone in my own personal language. As long as you have a smile on your face they will never know. I went to the pharmacist to get my prescription renewed and had forgotten my talker so I was writing notes and my pharmacist was writing notes back to me! And this is a guy I have know for quite a long time.

lol does he think your deaf also

[BarryG]

I guess if I am dumb I might as well be deaf too!

[indigosd]

Unfortunately it is just human nature and if they can not understand YOU, they just talk louder, slower or stupidly write notes!

[tdamess]

that is very true and it really stinks