Thank you so much, once again for an honest account of how difficult it is to live with IBM. I'm a carer for my husband who is now 81 and has had IBM for about 11 years. Please give Cindy my regards as a fellow carer, she's an inspiration. I never know how our day will go but I am grateful for every straightforward day. Pain comes and goes and it only takes one pain in an elbow, ankle, knee or foot to make Terry's needs increase. He gets anxious and I have to remember his reactions are not aimed at me, but at his frustration towards his circumstances. Take care and thank you again, Maralyn Osman
Jerry, my sincere thanks for your wonderful in providing the series of videos. I live in the UK and that the level of practical knowledge to cope with IBM on a daily basis is very limited. My diagnosis in 2019 was fairly speedy, due to the experience of two excellent Consultant Neurologists. However, because the disease is very limited in the UK, the joined-up day-to-day assistance is hard to find. I have adopted many of your suggestions on equipment and methodology which have been invaluable. Although not very palatable to discuss toileting is a particular problem for me. Any advice you may have on methods to allow safe urinating during the night and cleaning after opening the bowels. My gluteal muscles are so weak that rhe bidet spray does not reach the appropriate areas. Any help would be appreciated. Regards
I have always been lucky enough to have my spouse help me during the night by holding a urinal jug for urinating. Any trips to the bathroom to empty my bowels is accomplished by being lifted up with my sit-to-stand lift and caregiver and being taken to my bathroom's toilet. I have a Bio Bidet BB-2000 bidet attachment on my toilet. The spray of this bidet can be adjusted for proper cleaning of the evacuation area. I also utilize the enema feature for prompting a bowel movement when my lower sphincter is not cooperating.
@@IBMyositis Jerry, thank you for the honest response. I often think it is the carer who suffers most, especially if it our wives. As I said I was diagnosed in 2019 at the age of 74 but, in hindsight, it was there many years before. I think I am at the latter end of Stage 2 as the scoring system is a little subjective. ( Half points may be a good idea.) I am already finding life very taxing. Thank you again for your most informative videos and regards to Cindy.
Thank you Jerry for the many hours you have put into making this video. You are helping many more people than you realize.
Thanks Jerry. Living alone w IBM is frightening when I see how much spouses do.🌺
Thank you so much, once again for an honest account of how difficult it is to live with IBM. I'm a carer for my husband who is now 81 and has had IBM for about 11 years. Please give Cindy my regards as a fellow carer, she's an inspiration. I never know how our day will go but I am grateful for every straightforward day. Pain comes and goes and it only takes one pain in an elbow, ankle, knee or foot to make Terry's needs increase. He gets anxious and I have to remember his reactions are not aimed at me, but at his frustration towards his circumstances. Take care and thank you again, Maralyn Osman
Amazing detail on your daily routine. You certainly answer his question. Take care. We think of you and Cindy often.
Thank you Gerry for giving me the platform to air my ongoing ibm
Jerry, my sincere thanks for your wonderful in providing the series of videos. I live in the UK and that the level of practical knowledge to cope with IBM on a daily basis is very limited.
My diagnosis in 2019 was fairly speedy, due to the experience of two excellent Consultant Neurologists. However, because the disease is very limited in the UK, the joined-up day-to-day
assistance is hard to find. I have adopted many of your suggestions on equipment and methodology which have been invaluable.
Although not very palatable to discuss toileting is a particular problem for me. Any advice you may have on methods to allow safe urinating during the night and cleaning after opening the bowels.
My gluteal muscles are so weak that rhe bidet spray does not reach the appropriate areas. Any help would be appreciated. Regards
I have always been lucky enough to have my spouse help me during the night by holding a urinal jug for urinating. Any trips to the bathroom to empty my bowels is accomplished by being lifted up with my sit-to-stand lift and caregiver and being taken to my bathroom's toilet. I have a Bio Bidet BB-2000 bidet attachment on my toilet. The spray of this bidet can be adjusted for proper cleaning of the evacuation area. I also utilize the enema feature for prompting a bowel movement when my lower sphincter is not cooperating.
@@IBMyositis Jerry, thank you for the honest response. I often think it is the carer who suffers most, especially if it our wives. As I said I was diagnosed in 2019 at the age of 74
but, in hindsight, it was there many years before. I think I am at the latter end of Stage 2 as the scoring system is a little subjective. ( Half points may be a good idea.)
I am already finding life very taxing. Thank you again for your most informative videos and regards to Cindy.
How does anyone pay for that level of care? One would need a FT caregiver.
I have IBM. What is a 5 FRS IBMer?
ua-cam.com/video/XZaScX5hbe0/v-deo.htmlsi=rJKaeVUo4ou2fgAk