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When did you first know you were a slow progressor?
How and when did you first learn that your symptoms were progressing slowly? Did someone tell you? Or was it something you realized over time?
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10 Replies
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I didn’t realize I was a slow progressor until about 4 yrs after my diagnosis when I attended several ALS events and noticed the difference between myself and the severity of others who had only had ALS a few yrs. The gap widened when I hit the 5 yr. mark and then the 10 yr. mark – – I was still able to walk with a rollator and had minor swallowing issues. At that point, my doctor agreed that I was progressing slowly. I hoped to meet others who were the same as me, but that only happened online. I’m glad we have this forum to meet and chat with each other.
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When it was diagnosed in 2023. I figured I noticed the first symptoms back in 2021 which means it started before that at least to 2020.
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Neurologist told me I’m a slow progressor. I’m still hoping to get stronger legs, or at least plateau.
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I started having issues in 2013..started falling..balance was off. Did not get diagnosed until 2018. Was told then I had slow progression. I still walk with rotator around house but use wheelchair out. Can dress myself, eat, talk and still capable living alone with homecare aide 5 days a week that assists with shower, hair, laundry, cleaning and meal preparation.
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May I ask, what do you do for the other 2 days? Does a family member come to help you?
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I had drop foot, 3/2020. Since, I was told by three doctors that I don’t have any MND, before diagnosis . I can still walk about 20 yards. Things are starting to accelerate, as I am noticing that my whole body is loosing strength. Oh my favorite. Hospice dropped me because I’m not dying fast enough.
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I’M IN MY FOURTH YEAR. JUST STARTED TO NOTICE SERIOUS CHANGES IN THE LAST 5 MONTHS.
INTENSE PAIN IN BOTH HIPS WHEN I WALK. WALKER HELPS SOME! EATING OK & DRINKING OK.
DROPED FOOT IN1999. LEFT SIDE MUSCLE LOSS. LEFT CALF 14 INCHES & RIGHT CALF 16.6 IN.
OH DID I SAY BOTH HIPS INTENSE EXCRUCIATING TREMENDOUS PAIN WHEN I WALK !!! SEE ALS
SPECIALIST AT NORTHWEST HOSPITAL IN DOWNTOWN CHICAGO. OTHER SMALL PAINS AT TIMES. TREMBLING HANDS HAVE ALSO GOTTIN MUCH WORSE IN THE LAST 5 MONTHS !! I SIMPLY AM GRATEFUL TO GOD I’V NOT WORSE OR EVEN DECEASED !! I LOVE MY FAMILY & FRIENDS !!!!!!!!!
THE BEST TO EVERYONE GOING THRU THIS AND OF COURSE THEIR VALUABLE CAREGIVERS !!
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Are you able to take pain medication for your hips?
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Sounds like you are managing your pain and symptoms well. May I ask, do you rely on caregivers or are you doing this alone? Does the up/down of Chicago weather affect you and are you able to get to places easily?
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I was diagnosed with Primary Lateral Sclerosis (PLS) in February 2010, and was treated at the Les Turner Clinic at Northwestern Hospital in Chicago. On April 23, 2014, Dr. Ajroud-Driss (my Neurologist) changed my diagnosis to upper motor-neuron slow-progression ALS. I asked her whether it was a name change or a disease change. She told me that ALS was a spectrum disease: at one end is “pure” PLS and the other end is “pure” ALS. I had passed the midpoint, and was on the ALS side of the spectrum.
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