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Originally Posted by seacoasthalo
Jana, I have read so much on both ALS and MG and I would love to hear the story of your friend that you followed. Is there a site (like a blog) where I could read about him? Thank you for the two sites..I have read a lot, but had not seen those two site. My main reading after doing the "Dr. Google" thing was on a another ALS Forum and that has been very informative. Too afraid to post at this point over there. It seems to gain MANY people seeming to want to have ALS. And I do not want to come off as a "looking for a disease" kind of person. Thank you for your prayers...We can go through anything as long as we are going through it with our Father.
Desert Flower, YES!!! That does help. I have often heard less is more even with medicines. I know wonder why they would have him lower the pills to 2 and not cut the mg's in half instead. (((I hope I do not have this wrong, when he gets home from work, I will ask him.)))
The encouragement this has brought me today is unreal. Blessings to each of you that respond...you are WONDERFUL!!  |
I met the family through the wife's blog. Originally, the doctors thought he had MG. It took quite a while for them to diagnose ALS. It is sort of a process of elimination. He died last spring -- only 38 years old. Soon after, his wife deleted her blog. I think it may have been too painful -- and they had children. I learned sooooo much from her blog -- they were such STRONG Christians -- and so open about what was happening to him. I think about them often.
The thing about blogs, forums, and groups for ALS patients.............you don't usually have this for very long (several years) -- and part of the time you aren't able to really communicate very well. So, I would think that many ALSers would rather be doing OTHER things -- ANYthing else but spending time on a computer talking about being sick. MGers on the other hand -- we are in this for the long haul -- normal life spans. We have years to observe our symptoms, figure out how to manage things, make friends with other MGers -- it's really just "different", if you see what I mean.
I would think that ALS patients would be more likely to have something like Caringbridge sites -- but, you would have to know their names to have access.
You might want to set a "google alert" for "ALS" and "Lou Gehrig's Disease" -- that way you MIGHT find someone's blog.
When is your fiance's next appointment? If I remember correctly, the docs start looking for muscle fascillations -- may make your guy put on the gown and watch his arms and legs with GREAT intensity. Especially the weak arm/hand.