Dose anyone else feel like neuropathy is taking over their life?

It’s nice to hear support from people. My neuropathy has taken over my life. I am also bipolar. The stress adds even more symptoms. I have lost my home and my car. I am blessed to have family to give me a roof over my head. I can drive but my reaction time is much slower for braking. My family drives me to where I need to go. I have just been denied social security disability after waiting a year and half. I have no medical insurance anymore. I feel like a burden on my family. I feel myself going into a deep depression with my bipolar. My prayers to everyone who is battling any medical or mental illness.

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It's me again - the word that was supposed to come up for the shaking machine was handle bars, not handbags! Spell-check comes through again!

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Hi Ann - Yes, for sure - it is something I wouldn't have guessed in a thousand years could be so debilitating. Have you access to a physical therapist? Mine is a myokinesthetist who uses a number of machines (for want of a better word) to help with my P.N. I don't know the names of them, but anyone in that line of treatment work, would. One thing she does is apply deep tissue laser treatments to my feet and hands once every week. Medicare doesn't cover it ~ I have to pay for it but it works so well I am endeavoring to find a way to come up with the money (about $40. each session). Medicare covers laser therapy that is considerably weaker (and doesn't work for me) ~ in fact, the "machines" aren't even the same. It does not help with imbalance, but - wonder of wonders - my hands are actually usable again for small motor skills that do not require me to put pressure on them or handle heavy things.

A very unfortunate side effect of this disease we share is that one becomes less mobile for fear of falling, and therefore loses muscle strength in the legs. My P.T. recently acquired a platform with handbags that I simply stand on, with knees not locked, and it shakes at whatever intensity and length of time she sets it to. It also has program settings where the shaking is of random intensities. According to what she told me, 10 minutes (which is the maximum recommended) of using this device is the same as 20 - 30 minutes of treadmill workout. Presumably this is because your leg muscles work in response to the movement in order to maintain your balance. You don't walk anywhere - you just stand in place, and it does help with strength. Medicare covers it and I use it twice every week in her office (the second time in a week is not considered an appointment).

In addition to these things, I also use a device called a Scoop which helps with leg and core strength. You sit and pedal it but instead of up-down, it goes side-side. My P.T. loaned me one for several weeks to use at home --- a year ago I had to have a partial hip replacement and this was used in therapy for that. It helps with leg strength and flexibility, and is available for anyone to purchase. According to its website, it is about $250. I have not purchased one but if I had an exercise room or finished basement, I would.

P.N. has definitely changed my life forever from what I had envisioned, but I am grateful beyond measure for the options that are accessible, and for the blessing of the support groups that are available through Mayo. Keep searching for things you haven't yet tried - better yet, pray to God through Jesus Christ, that He would reveal what you need and show you how to get it.

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Thank you for all the info you gave in this response regarding what you are doing for neuropathy. I live in Canada and I am going to see if I can find a myokinesthetist and also the Scoop you mentioned. I am so handicapped from this illness and I fear one day I will no longer be able to use my walker. I can’t stand by myself which limits some of my exercise activity. I think what hurts me the most is having to depend on others for help. I bought a scooter last year which does help me in many ways but our summers are so short here and once the snow and bad weather sets in I am housebound
I will keep you and others informed if I find help here with your info. Thanks once again.
Tessie63

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🤣🤣 I was following closely and the machine sounded very useful, but I was struggling very hard trying to imagine the handbags! (Though walking with a handbag is a good exercise 😊)

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Hi Tessie - thank you for your kind words. I should mention that the Scoop, although not a huge piece of equipment, weighs more than I can pick up. Aside from the one I am borrowing, I have only seen it online. It does require assembly at home. I can move it a few feet in order to vacuum but I would not be able to carry it into the house. (I'm 76). It is a nice piece of equipment, though, especially since it is used while you are seated. I have an appreciation for your shorter summers as my granddaughter and her husband live in Canada and they keep me informed. And I can empathize with how it hurts to depend on others. But I have found that people are so glad to be helpful in this age of independence when our social units are so strung-out. We all need to be needed.

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Hi Ann - Yes, for sure - it is something I wouldn't have guessed in a thousand years could be so debilitating. Have you access to a physical therapist? Mine is a myokinesthetist who uses a number of machines (for want of a better word) to help with my P.N. I don't know the names of them, but anyone in that line of treatment work, would. One thing she does is apply deep tissue laser treatments to my feet and hands once every week. Medicare doesn't cover it ~ I have to pay for it but it works so well I am endeavoring to find a way to come up with the money (about $40. each session). Medicare covers laser therapy that is considerably weaker (and doesn't work for me) ~ in fact, the "machines" aren't even the same. It does not help with imbalance, but - wonder of wonders - my hands are actually usable again for small motor skills that do not require me to put pressure on them or handle heavy things.

A very unfortunate side effect of this disease we share is that one becomes less mobile for fear of falling, and therefore loses muscle strength in the legs. My P.T. recently acquired a platform with handbags that I simply stand on, with knees not locked, and it shakes at whatever intensity and length of time she sets it to. It also has program settings where the shaking is of random intensities. According to what she told me, 10 minutes (which is the maximum recommended) of using this device is the same as 20 - 30 minutes of treadmill workout. Presumably this is because your leg muscles work in response to the movement in order to maintain your balance. You don't walk anywhere - you just stand in place, and it does help with strength. Medicare covers it and I use it twice every week in her office (the second time in a week is not considered an appointment).

In addition to these things, I also use a device called a Scoop which helps with leg and core strength. You sit and pedal it but instead of up-down, it goes side-side. My P.T. loaned me one for several weeks to use at home --- a year ago I had to have a partial hip replacement and this was used in therapy for that. It helps with leg strength and flexibility, and is available for anyone to purchase. According to its website, it is about $250. I have not purchased one but if I had an exercise room or finished basement, I would.

P.N. has definitely changed my life forever from what I had envisioned, but I am grateful beyond measure for the options that are accessible, and for the blessing of the support groups that are available through Mayo. Keep searching for things you haven't yet tried - better yet, pray to God through Jesus Christ, that He would reveal what you need and show you how to get it.

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Could you please provide more detail of what you described as a platform with handbags on it? Thank you! Lindsay

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