Recent content by Scotiaspirit

Still fighting this formidable adversary. Had a few bad falls this fall, and got hit with Covid two days after Halloween. Sadly my wife and main caregiver was diagnosed with multiple myeloma and the disease is too advanced for chemo or stem cell transplant. The cancer is through all her...

I get my blood done 1x month, as I am diabetic, fatty liver and have spleenmegagoly (sp?) along wit’s ALS. I just finished my 39th cycle of Edaravone/Radicava completing three years of treatment. This low output just started on my last three treatment cycles. In the past it resolved after a...

I do not have a catheter, but certainly have a bloated mid abdomen. I been in touch with my doc, have an appt next Wednesday, if my symptoms worsen, I am to go to EMERGE. Still waiting for a urologist consult.

I have called MT Pharma, and this was the third incidence this happenned to me. They are going to note this as an adverse event and my Neuro is going to send me to an urologist for follow up.

I have an urgent question to our membership, has anyone developed serious kidney problems while on Radicava? I usually void 2 to 2.5 litres of urine everyday. During my previous treatment and tomorrow is the last day of treatment on this cycle, my kidneys have drastically slowed producing...

I get reflux with PEG Tube and take Pruclipride, Prevacid and Domperidone. I have gastroparesis aggravated by diabetis and ALS. TO help to empty my GI system, take Restoralax 17g, and Lactulose 30mls (bedtime). Prune Juice helps to ease bowel emptying as well. I have had several years of...

I get reflux with PEG Tube and take Pruclipride, Prevacid and Domperidone. I have gastroparesis aggravated by diabetis and ALS. TO help to empty my GI system, take Restoralax 17g, and Lactulose 30mls (bedtime). Prune Juice helps to ease bowel emptying as well. I have had several years of...

We are sorry for your loss. His soul is free. I believe as soul, when we translate (cross over, die) that our essence or energy we call soul stays close by to comfort other souls through intuition and syncrinocity and when soul is comfortable to do so, it will leave and go to the place of...

@affected I had two close calls with infection almost going septic this year slone, plus surgery in September with Osteomyelitis in my lower left jaw bone, had two teeth removed and jaw bone scraped by oralmaxifacial surgeon. Back in Jan and July, had buried bumper syndrome (gtube lodged in...

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I sincerely appreciate the heartfelt compassion and emotions a talk like this brings. It is a talk I had often with my GP, neurologist and immediate family members including my cALS who is my wife. Quantity of Life vs Quality of Life and I believe when Quality of Life reaches a point where...

I would recommend Canadian Pals to see the good work ALS Action Canada is doing to help pALS get speedier access and more access to studies and new treatments. Check us out.

Sometimes words are hard to find. I am fortunate my wife has taken good care of me for the last five years. I am greatful for it, and so fortunate. Her psychological health has taken a big hit, the enormous worry, enormous workload, and I am becoming more of an invalid with each passing week...

I hear you all. I know my wife has gone through a living hell trying to look after me. I had been keepping focused on fighting the disease. My symptoms started five years ago, and had three hospital stays since mid December 2019. I want to see my son get married and step grandson start...

I have had a lot of problem with gastroparesis and several ileus episodes the last few years that required hospitalisation. Try to keep stool as loose and hydrated as possible. Sometimes adding 500ml to a litre of extra water via gtube can help. Never do that without a doctors advice first...