Not to sound silly, but I just love seeing your avatar. You seem like the nicest person, just by the photo, let alone your caring posts. You look like the friend, neighbor or relative we all would like to have
Pray you are having a good day and feel well.I was at MUSC and given tons of Botox,takes a couple of weeks for it to work and I feel effects today.Have not used the Bipap very much because of the drool and will try it today.I started to go to MUSC and was seeing Dr.Kurent and he told me I should be going to VA Hospital down the street because of benefits,he was right.Like you my ALS has been moving fast and I am getting weaker,can hardley walk with walker and my arms and hands very weak.Have a great day--------------------------------Hugs Ken
Hi Deb again! Another question before I go to work. Your thoughts about getting a second or third opinion from a neurologist and if we do, is it acceptable to be affiliated with more than one ALS clinic for upcoming clinical trials. We are presently seeing someone at UCLA, but have found that USC has a ALS clinic with top neuros as well. Don't feel completely at ease with talking with our current doc. I feel bedside manner and open dialogue with him is lacking. Thanks for your thoughts!
Dear Deb, my best friend was just diagnosed with ALS, we are all sad and scared. She is a RPT so knows the what she is in for. I don't know if she will visit this forum but I will try to encourage her. I don't know why I picked you to correspond to, but your bio hit my heart. Will you be my friend ?? Thanks, Mary
Am doing ok,treatment for breathing issues have worked.The hospital ER is less than 3 miles from my house and they know what I need.I go for sleep study Sat. night at VA in Charleston and Bipap training.Very cloudy here,no sun,temp is 74.Had Hospice from Heartland visit today and they want to get me sighned up for care.Have a great day----------------------Hugs Ken
Thank you very much Deb! It always takes me awhile to adjust to change. Life sure is one heck of an adventure! I love it! Even the rough stuff. Lets keep each other posted as we write this book.
Wishing you a Happy Thanksgiving and a very happy weekend,pray your doing well and have family with you today.We have bright sunny day here,should get to 68,love SC.Have you been able to get out on the PWC,is it doing good.------------------------Hugs Ken
Congrats on your PWC,hope it works fine for you.I now have 103 miles on mine,was at the State Park Pier yesderday watching all the fishing going on and enjoying the sun,supposed to be 80 here today.Have a good one!-------------Hugs Ken