My Mother

Question:

Hey Gang, I just wanted to check in and tell you that my mother was finally diagnosed with having Dystonia.  It has taken a long time for that diagnosis, but we’ll take it.  I don’t have all the details, but I will let you know when I have them. Thanks for all the responses I received on my mother.  You guys always come through when it’s needed most. Much Love, Peanut

Response:

Donna, Can you post the symptoms? I think it’s a muscular disorder, but don’t know much more. I’m concerned because muscle weakness/dystrophy/cramping/spasm plagues me 24/7. I’ll understand if it’s too painful or personal and you pass… Thanks.

– Hide quoted text — Show quoted text -> Hey Gang, > I just wanted to check in and tell you that my mother was finally > diagnosed with having Dystonia.  It has taken a long time for that > diagnosis, but we’ll take it.  I don’t have all the details, but I will > let you know when I have them. > Thanks for all the responses I received on my mother.  You guys always > come through when it’s needed most. > Much Love, > Peanut

Response:

>My mother is 82 and has been suffering terribly with this disease.  Her legs >are so bad they look scalded.  She has had the ultra violet light treatments >and they helped for awhile.  Can anybody give me any suggestions about handling >this stuff?  She is on S.S. and had no pension.  Some of the creams she has >gotten in the past, which didn’t work, were very expensive.  What does cause >this terrible disease and how do you prevent it? Does any one particular >vitamin help this.  I really appreciate what ever info you can pass on to me. >Thanks!

Bad news first is that there is nothing you can do to prevent it per se. Psoriasis is an autoimmune system disease where a faulty gene makes her skin susceptible to being triggered into fighting itself, leading to the symptoms you see. The symptoms are the result of that trigger making the skin cells go from new cell to flaking off at about the speed that happens on a normal person when they have a wound being healed -every 3-7 days vs the usual every 30 days or so. If you get P, then you already have the faulty gene that causes it, so there’s nothing to avoid to prevent ‘catching’ it. That being said, there are a couple of preventative type things that may help. First is to try to identify triggers that can make it flare up in the first place or make it worse. These can vary a lot among individuals. Stress is a fairly common one. There are a lot of reports here on the ng about people having different foods act as triggers. Other environmental factors can do the same, ranging from climate to perfume in laundry soaps. This can be tedious to do, but can be a big help for some in minimizing the effect. It mainly invoves trying to figure out what happened around the time it flares up different from when it didn’t, then testing through eliminating that thing or in the case of something like food, trying it again to see if the results repeat. Other things that can help are keeping the skin well moisturized to minimize the discomfort and keep it as supple as possible to lower the risk of its becoming more damaged through dryness. This can be done with things like soaking in a warm bath then applying body oils or lotions. I understand where you might be concerned with the slip and fall risk in such things with an 82 year old woman, but even some moisturizing can help. A certain amount of the alternative treatment claims for success involving things like emu oil likely come down to little or no more than just the effect of using an effective moisturizer. On the vitamin side, there’s been discussion here of people being helped with B12 & folic acid in combination. Didn’t do much of anything for me after an exended trial, but that doesn’t mean it won’t help your mother. Try a ng or web search under those names or Dan Sipler, who first discussed the idea here. Some have reported help with essential oils such as oil of evening primrose. Others with things like shark cartilage. Try a ng search at dejanews under alternative treatments to see other ideas. Again, the big thing to remember is that not everything helps everyone, so you should take any such suggestions with a grain of salt while not taking the failure of one suggestion to mean that all others will also fail. You might want to consider joining or having her join the NPF (National Psoriasis Foundation). It’s a non-profit founded by people with P and they’re a good source of info. One of the things they offer members is a bulletin in which people post messages about different things that have worked for them within and outside standard medicine. They have a website with contact info at http://www.psoriasis.org They do other things that might be worth looking into, such as helping people get reasonably priced home UV units, since you mentioned that helping her and cost is an issue. Hope this at least gets you started with some ideas -Kim

Response:

My mother is 82 and has been suffering terribly with this disease.  Her legs are so bad they look scalded.  She has had the ultra violet light treatments and they helped for awhile.  Can anybody give me any suggestions about handling this stuff?  She is on S.S. and had no pension.  Some of the creams she has gotten in the past, which didn’t work, were very expensive.  What does cause this terrible disease and how do you prevent it? Does any one particular vitamin help this.  I really appreciate what ever info you can pass on to me. Thanks!

Response:

>My mother is 82 and has been suffering terribly with this disease.  Her legs >are so bad they look scalded.  She has had the ultra violet light treatments >and they helped for awhile.  Can anybody give me any suggestions about handling >this stuff?  She is on S.S. and had no pension.  Some of the creams she has >gotten in the past, which didn’t work, were very expensive.  What does cause >this terrible disease and how do you prevent it? Does any one particular >vitamin help this.  I really appreciate what ever info you can pass on to me. >Thanks!

Bad news first is that there is nothing you can do to prevent it per se. Psoriasis is an autoimmune system disease where a faulty gene makes her skin susceptible to being triggered into fighting itself, leading to the symptoms you see. The symptoms are the result of that trigger making the skin cells go from new cell to flaking off at about the speed that happens on a normal person when they have a wound being healed -every 3-7 days vs the usual every 30 days or so. If you get P, then you already have the faulty gene that causes it, so there’s nothing to avoid to prevent ‘catching’ it. That being said, there are a couple of preventative type things that may help. First is to try to identify triggers that can make it flare up in the first place or make it worse. These can vary a lot among individuals. Stress is a fairly common one. There are a lot of reports here on the ng about people having different foods act as triggers. Other environmental factors can do the same, ranging from climate to perfume in laundry soaps. This can be tedious to do, but can be a big help for some in minimizing the effect. It mainly invoves trying to figure out what happened around the time it flares up different from when it didn’t, then testing through eliminating that thing or in the case of something like food, trying it again to see if the results repeat. Other things that can help are keeping the skin well moisturized to minimize the discomfort and keep it as supple as possible to lower the risk of its becoming more damaged through dryness. This can be done with things like soaking in a warm bath then applying body oils or lotions. I understand where you might be concerned with the slip and fall risk in such things with an 82 year old woman, but even some moisturizing can help. A certain amount of the alternative treatment claims for success involving things like emu oil likely come down to little or no more than just the effect of using an effective moisturizer. On the vitamin side, there’s been discussion here of people being helped with B12 & folic acid in combination. Didn’t do much of anything for me after an exended trial, but that doesn’t mean it won’t help your mother. Try a ng or web search under those names or Dan Sipler, who first discussed the idea here. Some have reported help with essential oils such as oil of evening primrose. Others with things like shark cartilage. Try a ng search at dejanews under alternative treatments to see other ideas. Again, the big thing to remember is that not everything helps everyone, so you should take any such suggestions with a grain of salt while not taking the failure of one suggestion to mean that all others will also fail. You might want to consider joining or having her join the NPF (National Psoriasis Foundation). It’s a non-profit founded by people with P and they’re a good source of info. One of the things they offer members is a bulletin in which people post messages about different things that have worked for them within and outside standard medicine. They have a website with contact info at http://www.psoriasis.org They do other things that might be worth looking into, such as helping people get reasonably priced home UV units, since you mentioned that helping her and cost is an issue. Hope this at least gets you started with some ideas -Kim

Response:

My mother is 82 and has been suffering terribly with this disease.  Her legs are so bad they look scalded.  She has had the ultra violet light treatments and they helped for awhile.  Can anybody give me any suggestions about handling this stuff?  She is on S.S. and had no pension.  Some of the creams she has gotten in the past, which didn’t work, were very expensive.  What does cause this terrible disease and how do you prevent it? Does any one particular vitamin help this.  I really appreciate what ever info you can pass on to me. Thanks!

Response:

Related Posts