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Thank you for your thoughts and prayers

I'm very overwhelmed by diagnosis, was always hoping it was something else other than als .The doc said there was a very slight chance it could be some other motor nueron disease,begins with an M but the day i was diagnosed is a blur (very emotional].  I always told my kids I was superman and I felt like it,was very strong. Now a preteen could kick my butt.My sister is hoping I have late stage Lyme disease and is trying to get me an apptment with the top Lyme doctor at MGH Boston. I also have to talk to my primary care about a second oppinion. I'm hoping I have several more years bofore i'm wheel chair bound, I'm still on two feet,and I'm gonna fight it as long as I can, I've had symptoms four almost two years, the doctor said I could live another 15 or more but I think he was trying to make me feel better, I could be gone in 2 to 3 who knows. I've got a 2 year old grandson who has been living with me since he was 6 months old (with his mom ,my daughter) I'm the only male role model he's got ,his father was killed before he was born.They are moving out this week,kind of when i need them here the most, oh well. I guess now she'll figure out what is really like to be a single parent,she could sleep in every weekend and I would be up with luke at the crack of dawn, he's my lil buddy . Want to be around long enough so he remembers me. Sorry about the diatribe of BS kind of an emotional morning.Thanks again........Tibs
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6 Comments Post a Comment
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Thanks for your share. I hope and wish it is not ALS. I do not know what to say the wrong thing. I like your heartfelt thoughts.

Alex
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I am so very sorry for your diagnosis. You sound like you have an incredible fighting spirit and that will serve you well. You can still be superman, to fight through such adversity, that is true strength. My thoughts and prayers are with you.
Hugs,
Daphne
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382218_tn?1341185087
Once you've had to some to absorb all of this, and a chance to breathe, and even to get that second opinion, you might want to consider looking into clinical trials for treatment of ALS if it is confirmed that this is indeed what you have.  

Here is a link to NIH website for trials that are currently recruiting new subjects at various sites in the US and elsewhere:

http://clinicaltrials.gov/ct2/results?term=amyotrophic&recr=Open



I also just want to add that a close family friend of my parents was dx'ed with ALS in 1986 and lived more than 15 years with the disease.  He was a retired naval officer and successful magazine publisher.  He became very involved in ALS research and this seemed to help him deal with his dx, to be doing something proactive for himself and others with this disease.  Bear in mind that your dx comes 26 years after his, and how much more is known and understood about ALS than was in the mid-80s.  I am hopeful that this bodes well for you and your future.
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hang in there and leave no other stone unturned.  Like MS, there are mimics.
but do admire your courage!  Life deals us strange cards sometimes.......
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I think it is so honorable that your grandson is in the forefront of your thoughts during this time, tibs.

Please know that our thoughts are with you. You are doing the right thing by seeing multiple specialists and reaching out for help. Fight for the best healthcare possible. You deserve it.
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Ahhhhhh....I am so sorry.

Pretty sure this is just the beginning of the emotional stuff coming out. You have a lot on your plate.

I cannot offer you any advice except to not get too far ahead of yourself.

We will be thinking of you and hoping for the best.

Julie
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