I am my husbands CARELOVER….we have been living with OPMD for 18 years. We have come to a cross road where the dysphasia is causing severe weight loss. He suffers from aspiration pneumonia many times in a year. His nutrition is low & now we must address the issue.& treat it. Looking to hear from our new friends here as to their experiences using this treatment.
We are a little behind you but rapidly approaching the same juncture. We live in a major city with vast medical resources and have yet to find adequate support for OPMD. We see all the usual OPMD symptoms but there are profound head to toe weakness symptoms leading to increasing mobility limitations that receive only a shrug. For me it’s the lack of practical advice and training in the physical caregiving aspects. For my wife it’s finding a physician that responds with any specificity due to the lack of study of this variant of MD. And there is the psychological component, including denial and hesitation, that frustrates both of us.
If we can solve some of these impediments we will certainly share our progress.
Hi…well my guy has chosen to have the feeding tube. We have been made aware of the pork’s & cons and feel it will be for the best. How long have you been fighting this beast? We have for 18 years since he was diagnosed. If you would please share your story with us.
Hi…my. husband has been fighting this for 18 years. As the years go by things are becoming more difficult . We are now looking to feeding tube also. He has been losing weight almost forty ponds in four months. The dysphasia when eating is keeping him from eating as he always has. Also his legs & girdle muscles are very weak. Let us know how you fair with the feeding tube. Our journey ontinues.
Yes the psychological aspect can be very frustrating. My guy is waiting to have a feeding tube implant done. The dysphasia is causing him much chocking. As far as our medical care we have been very blessed. We are God believers & so thankful for that in our lives. Our story continues…