Ronald James Spitler
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Nurown now has orphan status ,but will not release the treatment , according to my neurologist . Please let me know when you find success . Thanx
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I’ve had ALS for nearly 3 years but was treated for Lyme until a year ago. My Bulbar started over 2 years ago and the team at Henry Ford Hospital in Detroit got right on it. First, a bi-pap machine assists breathing and saves energy…the best thing you can do. Nudexta got rid of the involuntary laugh/cry problrm. A speach therapist was great for training me how to eat,swallow, breathe and speak better. She also suggested a “Breather” to strenghten my lungs. My lung capacity is above average for my age( a spry 77). I’m holding my own for now. We’re “baracaded” in our home waiting for this crisis to pass.
Good luck
Ron -
I just lost about 10 lines of text when an errant finger bumped the wrong key so am shortening it. I’ve had ALS for nearly 3 years and am like an adolescent reverting to a baby. I’m 77 years old. I can’t help with anything and have limited abilities, including using a walker a bit. My wife is very supportive and does so much for me. I don’t know how, but she’s still with me.
We survive on love, humor, faith and support from church, family, many friends and ALS associated groups, including LiveLikeLou.
She goes to caregiver meetings, works out for stress relief, and has several friends with ailing spouses to talk to. I don’t know how she does it, but she’s my Angel. She has newfound patience- not easy as she is Italian! At this point we’re anxiously waiting for the Platform Trial to start ( with a spot for me I hope) and the miracle of a cure for all of us! My motto is: I MAY BE SLOW, BUT I’VE STILL GOT GO! -
IN SPRING OF 2017 I HAD A “COLD” FOR 3 WKS. WHEN IT ENDED I WAS WEAK ON LEFT SIDE AND HAD SLIGHT SLAP FOOT PLUS SLIGHT SPEECH ISSUE AND MUCH FATIGUE/WEAKNESS. SYMPTOMS SO MIXED WE THOUGHT IT WAS LYME SINCE IT MIMICS EVERYTHING. BLOOD TEST DIAGNOSED IN CA “CONFIRMED” IT. LYME SPECIALIST STARTED ME ON HEAVY ANTIBIOTICS, ETC AND AFTER A YEAR SWITCHED TO NEARBY INFECTIOUS DISEASE DR WHO SOON PUT ME ON PICC LINE AND 1-2 HRS IV’S DAILY! AFTER 9 MO OF THAT I WAS STILL DECLINING AND WENT TO CLEVELAND CLINIC FOR OPINION. AFTER 20 MIN EXAM WITH NEUROLOGIST WAS TOLD, BLUNTLY, THAT I HAD ALS! LATER GOT ANOTHER OPINION FRON HENRY FORD HOSP, MI WITH EXTENSIVE TESTS. THEIR ALS CLINICAL TEAM HAVE BEEN WONDERFUL IN CARING FOR ME FOR JUST ABOUT A YEAR. FRUSTRATING TO HAVE LOST SO MUCH TIME. I CAN BARELY USE WALKER, HAVE POWER CHAIR AND NEED HELP WITH JUST ABOUT EVERYTHING. ANXIOUSLY AWAITING PLATFORM TRIAL. I’M 77
RON SPITLER, MI -
I have found relief from muscle twitching and spasms in my legs with twice daily application of CBD/THC cream. Using 25% each in essential oils.