[susan-bowman]

I agree with Sheila one hundred percent!  I started going to doctors in early 2016 to find answers as to why I was experiencing changes in my speech, the sensation of having something constantly stuck in my throat, neck cramps and most importantly, a decline in breathing capacity.  I saw numerous doctors, had a pile of tests, with no results. Each time, I was placated by a “no news is good news” philosophy.  An endoscopy showed swallowing abnormalities (but no answers as to why) and finally a head/neck surgeon told me my vocal cords were paralyzed and that it was definitely “something neurological.”  It took me about 15 minutes to come up with the diagnosis of ALS, which sent me to the ER with a panic attack.  I was told by the ER physician to “stay off the internet.”  Two weeks later my diagnosis was confirmed by a simple office exam, which included no new testing, by a 2nd neurologist.   While I guess I am thankful I had 18 months of ignorant bliss and normal living, it still baffles me that, with what I now know are classic symptoms of bulbar onset ALS, it took 18 months and 6 different doctors to get the answer.

[susan-bowman]

So glad to see a topic regarding going to the dentist.  It’s now one of my greatest fears.  A month prior to my diagnosis I had a molar removed.  I was planning on having an implant done as soon as I healed.  However, that next month I received the ALS diagnosis and was in such shock and fear that I felt spending the thousands of dollars on an implant, when I didn’t know what the future held, didn’t make any sense.  I felt I had much bigger things to worry about than my teeth.

Now, 20 months later, I’m still mobile, but going to the dentist for routine cleanings and fillings has become very challenging due to breathing, swallowing, and saliva issues.  I’m so sorry I didn’t proceed with the planned implant, as having an open space in my mouth allowed my front bottom teeth to shift into an unsightly mess.  I even questioned my respiratory therapist about the possibility of the nightly bipap mask causing the shifting teeth.  (He said he’d never heard of that happening.)  I would consider braces, but again the unknown future/fear factor sets in.  Plus, while my dentist and hygienist are very caring, I don’t feel they have a clue as to what ALS entails.  I would love it if there were dentists available who were specifically trained to deal with ALS patients.

[susan-bowman]

I have to admit that regular exercise has never been part of my daily routine.  And since my ALS diagnosis it has declined even more.  I always had  a million excuses–too busy, stiff and immobile joints due to a lifetime with rheumatoid arthritis, etc, etc.  Now I have a whole bunch of brand new excuses–muscle cramps, lack of breath, too weak, etc.   I am so grateful to still be mobile, so I’m still walking, doing light household chores, cooking, cleaning up.  I just do everything much slower than I used to.  I do try to do ROM daily, along with very light and easy yoga stretches but thats about it.   I would love to follow your lead Dagmar, and I am inspired by all you do during the day.  Just wish I could stick to a routine more than a couple of days.  Lastly,  I feel we are getting mixed messages as whether exercise is even recommended.  So, of course, there’s another excuse not to do it!