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Severe Sensorimotor Polyneuropathy, Muscle Wasting, Numbness
Neuropathy | Last Active: 7 hours ago | Replies (16)Comment receiving replies
@db72 thanks again for encouragement and advice. I actually was looking into CBT for mental issues before this disease. I can still walk but use/carry a cane but now Im noticing it is very hard to walk on cement or anywhere other ( grocery store) than the residence I reside in. Its like the muscles and tendons are straining pulling in my feet and my toes arent bending - feel like my feet are just bones. I have an Afo on one of my legs but now the other foot is turning to the right. My thighs legs and feet also look weird due to muscle loss .
I’m sort of house bound as well in the residence Im residing in for reasons I wont detail. I call it residense as I lost my own place and the ability to work because of this. After this place I will be homeless. Ive talked to numerous social workers and they have not been of much help either. Family and friends are not of help and have told me I look fine and need to do things for myself. Well I guess they cant do anything anyways but I do feel greatly ignored. I feel as if I was the perfect person for this disease to choose in my circumstances. I now see and understand how people fall through the cracks. However I do wander why its ignored that I lived alone miles away from family by myself isolated to work for over twenty years but now need to do things for myself haha when I can barely walk - cannot drive. That was my downfall trying to live alone I suppose but I had to for work. I guess they have their reasons. I have heard similar stories of being ignored in support groups by family and friends who dissapear. I do not want to write a book as it would take forever to go into detail. That is the condensed version and it is long enough and I dont think people want to hear it. It just a slight reprive to vent.
I only wrote it because I wake up everymorning in a panic and funnily now that Im close to friends and family I feel more alone than I did on my own living miles away. They interacted with me more when I was living away. I’ll stop as I will continue to rant.
My question for anyone is how would you live with this disease (muscle wasting, mobility loss, diabetes) homeless on the street? I dont think I can do it I wouldnt survive. so I have enquired about medically assisted euthanasia but the process is long and hard and it is not a gaurantee to be approved. Im not in the States so it is available here.
Sorry for my posts but I really dont have anyone to talk to and not for lack of trying. I know of people with neuropathy from groups like this which I am very grateful for experience and lived advice. I just havent met anyone yet in my circumstance so it is very hard to not think about it on top of a debilitating disease.
If for nothing maybe someone will find relief in a similar situation with these posts. Thats how I came across this board.
Im cognizant that these posts arent maybe suited for this board so if you read thanks and do apologize for the annoyance.
Replies to "@db72 thanks again for encouragement and advice. I actually was looking into CBT for mental issues..."
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@megidigo Hi. I am so sorry for your situation. I can tell you that things you wrote explain situation my dad was just 2 years ago. He was diagnosed with severe sensorimotor axonal polyneuropathy which is as they said idiopathic. Long story short they gave him some meds for pain eventho he didn't really have much pain but could barely walk and had heavy foot drop, severe muscle loss and situation was getting worse and worse. What changed for him was initially testosterone therapy which gave him strength, energy, better sleep, improved mood and easier way to make more muscle and improve bone density. He also had anemia which improved with TRT as well. His issue with toes improved significantly once he started wearing toe spacers and introduced daily walking (he couldn't walk before at all or barely). He now does around 10000 steps but also walks backwards for about 10 minutes a day which has amazing benefits for balance and gait. He also started gym and gained muscles in legs and whole posterior chain, improved diet a lot (high protein, high fiber and more anti-inflammatory foods - salmon, grass fed grass finished beef, lots of veggies and fruit, and supplements like omega 3 fish oil EPA and DHA and D3+K2). He also takes B complex and A-lipoic acid.
Unfortunately, there is no cure for this disease, but situation can be improved a lot with exercise (both aerobic and anaerobic), diet and supplements. He also told me that what helps his cramps a lot is leg bath with warm water and epsom salt as well as some topical creams which improve circulation afterwards.
You have to attack this disease from many angles but once you get use to it it's not a biggie. My dad could not walk at all and now he is walking and going to the gym. I have to say it's not perfect. He still has issues, but where he was and where is he now is day and night.
I know its a lot of things but please don't lose hope and try to start adding 1 thing at a time. My dad is 71 and if he can improve that much at his age so can you as a much younger person.