Chris King
Forum Replies Created
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Interesting topic about our day’s level of energy and movement. The idea of reserving for days that are busy is great suggestion which you would think after 9 yrs living with the uncertainty of this disease I’d have figured out! Most days it’s more roller coaster from hour to hour which does definitely affect my mental/physical well being which drives me more crazy not realizing this is life now days and still thinking when those great moments occur I can paint the shed, wallpaper the dining room and maybe even iron!!! I have a therapist through my Teleheath Clinic who likens the down times to a bear hibernating to rest for the next season or moment, this thought sees me through those times when the down time can last few days not hours. They also recommend that I go to in person clinic for assessment and follow up with PT, Speech and Pulmoogogist which I have locally and they actually coordinate which helps me more than anything. Thanks for your patience and time, needed these thoughts today! Chris
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Well, looks like machines way to go! I’m have late onset bulbar PLS transitioning into ALS with copious amounts of saliva and phlegm not using the machines in any regular order. My nero;ogist and pulmonologist evidently assumed correctly that I’d come to my own conclusion that Mucinex, Botox and Nuedexta wouldn”t be enough. Thank you for sharing your experiences showing this stubborn 79 year old there’s much more learning and living left to do!
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I’ve had a pacemaker since December due to irregular heartbeat and afib 34-170, needless to say it needed to be regulated. Meds didn’t work so pacemaker inserted which works regarding the afib keeps heart rate between 60-80 most of the time but the side effects from the insertion are ongoing which cardiologist don’t seem to be able to figure out or relate to ALS resulting in possible reposition or move to right side neither of which appeals to me. I’d definitely gather all information available and if feeling generally the same as always probably pass for now. I’m 79 female diagnosed 2020, first symptoms 2016 as possible TIA due to bulbar onset and speech affected immediately plus weakness on left side.
Good luck and thanks for inquiring,
Chris King
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Understand completely and wish I had an answer or ideas for you and me both but I don’t yet but I’m not giving up on possibilities! Mainly I think some type of morning assessment might help just to stimulate my brain into a better sense of living with this stuff (not my usual description)There has to be something more joyful to our days hopefully through these forums we’ll get some answers!
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I’ve never had a clinic visit like that nor a full body MRI or lumbar puncture. Can’t imagine every 6 months, the 3-4 hour sessions that I have every 3-4 months are exhausting and haven’t been that productive after hopefully anticipating the first one. Everyone’s disease progression is so different I feel they’re much more comfortable with a set protocol than individual plans plus I’m at a research/teaching hospital that also is included in the clinic visit! I always take a folder with my questions tagged according to dept. and white board to explain as voice wears down.
Hopefully others will share their experiences to help everyone better prepare, thanks so much for sharing your thoughts and clinic experience.
Chris
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I have pain plus cramps somewhat relieved with Baclofen which was just increased at ALS clinic visit still low dose and feel it helps somewhat. My right arm and bicep have hurt plus swollen before officially diagnosed but never explored as upper motor neurons are only responding on EMG? I’m a firm believer in whatever normal we can do keep at it to our ability and willingness! I do wall yoga 4 times a week makes the difference between walking and somewhat talking which isn’t great but still feel like me most of the time. We can’t be defined by this disease nor should we be!
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I related to Eric’s post as I’ve increasingly experienced the social disconnect the last 6 years dealing with bulbar onset PLS. It was almost immediate once my speech and gait were so compromised and I was filled with rage as I could still contribute to the groups and organizations which I’d been involved with including church. The ALS clinic suggested CBT cognitive behavior therapy, now at 76 I was skeptical but the therapist listened and cared. She’d gave me permission to be angry but not be consumed by the disease, to coexist by identifying my new life in situations not my perceptions of what was and might have been. It’s not always easy but it gives me the ability to be me, to interact with family and friends on a new playing field doing things I love in PLS time. You know it’s very good most days and when it’s not, I try to accept those times by still being me not a victim of PLS!