[Grizabella]

Hi everyone. I'm 63 years old, a widow, and have been raising two grandchildren since they were newborns. They're 14 and 16 now. I began having trouble that I later found out was PN right after my husband died, although I've had numbness in my toes since I was young. It just took off faster after my husband died for some reason, although my feet have been so painful that it's been unbearable most of my adult life, and they turned red and swollen, plus I was diagnosed with some kind of inflammatory disease in 1990 when I had a huge crash but they could never figure out what obscure one of them it was. Then over the years and through many doctors and a lot of misery and frustration, my neurologist just told me that what I have is genetic, although he didn't give it a name. Seems there aren't any doctors who want to give "it" a name so far.

My primary care doctor asked me why I don't use the motorized carts in the grocery store, so I told him that I just hate to use them when someone else might need them more, even though my back hurts so bad I can barely stand up. My primary care doctor said the MRI he ordered didn't show bulging discs but my neurologist says I do have bulging discs. My primary care doctor (who I really do respect and like because he's done more for me than anyone else and referred me to the neurologist) told me I need to walk 30 minutes a day and go for physical therapy on my back. Well, I can't even walk a block much less for 30 minutes. I see my neurologist Friday to see what he has to say.

The reason I'm here is to see if I can alleviate my guilt feelings a little, I guess. I quit driving in about 2000 because of the numbness in my feet. I was afraid I'd fumble the brake pedal sometime and get in a wreck. Besides, I can't afford car expenses anyway. I do use public transportation, but I've stopped doing that, too, if I have to walk any distance at all from the city bus stop to where I need to go. That means I don't go anywhere unless my daughter takes me most of the time, but I hate depending on her so much.

To get to the point, my kids have been trying to find me a mobility scooter or Hoveround for a decent price so I can be independent again. I've always been a very independent person. The other day, we found a Hoveround mpv 5 for $150 on craigslist and when we went to investigate, it was for real----a working one for that price that had been used less than a year and then sat in someone's garage for three years or so! It's an answer to prayer! So the kids pitched in and bought it for me. But now I'm afraid to tell my doctors I'm going to be using it because I don't want them to tell me to just walk, not rely on the chair to go out and about town. Should I feel guilty to tell them I've just given in and gotten one? I'd use it to get myself to my neurologist appointment on Friday but don't want to be scolded. I'll just let my daughter take me and do all the walking to get into his office one more time.

I don't the power chair in the house because I can still walk around the house just fine but I do need it to go anywhere on my own outside the house. I'm no wimp---I've gone through a whole lot in my life, including now being sober for 24 years next month and being in recovery from abuse for at least that long, too, so it's not like I can't take pain. But I've had to cry "uncle" with this neuropathy.

Sorry this is so long.

[(Broken Wings)]

Originally Posted by Grizabella

Hi everyone. I'm 63 years old, a widow, and have been raising two grandchildren since they were newborns. They're 14 and 16 now. I began having trouble that I later found out was PN right after my husband died, although I've had numbness in my toes since I was young. It just took off faster after my husband died for some reason, although my feet have been so painful that it's been unbearable most of my adult life, and they turned red and swollen, plus I was diagnosed with some kind of inflammatory disease in 1990 when I had a huge crash but they could never figure out what obscure one of them it was. Then over the years and through many doctors and a lot of misery and frustration, my neurologist just told me that what I have is genetic, although he didn't give it a name. Seems there aren't any doctors who want to give "it" a name so far.

My primary care doctor asked me why I don't use the motorized carts in the grocery store, so I told him that I just hate to use them when someone else might need them more, even though my back hurts so bad I can barely stand up. My primary care doctor said the MRI he ordered didn't show bulging discs but my neurologist says I do have bulging discs. My primary care doctor (who I really do respect and like because he's done more for me than anyone else and referred me to the neurologist) told me I need to walk 30 minutes a day and go for physical therapy on my back. Well, I can't even walk a block much less for 30 minutes. I see my neurologist Friday to see what he has to say.

The reason I'm here is to see if I can alleviate my guilt feelings a little, I guess. I quit driving in about 2000 because of the numbness in my feet. I was afraid I'd fumble the brake pedal sometime and get in a wreck. Besides, I can't afford car expenses anyway. I do use public transportation, but I've stopped doing that, too, if I have to walk any distance at all from the city bus stop to where I need to go. That means I don't go anywhere unless my daughter takes me most of the time, but I hate depending on her so much.

To get to the point, my kids have been trying to find me a mobility scooter or Hoveround for a decent price so I can be independent again. I've always been a very independent person. The other day, we found a Hoveround mpv 5 for $150 on craigslist and when we went to investigate, it was for real----a working one for that price that had been used less than a year and then sat in someone's garage for three years or so! It's an answer to prayer! So the kids pitched in and bought it for me. But now I'm afraid to tell my doctors I'm going to be using it because I don't want them to tell me to just walk, not rely on the chair to go out and about town. Should I feel guilty to tell them I've just given in and gotten one? I'd use it to get myself to my neurologist appointment on Friday but don't want to be scolded. I'll just let my daughter take me and do all the walking to get into his office one more time.

I don't the power chair in the house because I can still walk around the house just fine but I do need it to go anywhere on my own outside the house. I'm no wimp---I've gone through a whole lot in my life, including now being sober for 24 years next month and being in recovery from abuse for at least that long, too, so it's not like I can't take pain. But I've had to cry "uncle" with this neuropathy.

Sorry this is so long.

No need to apologize. You have a lot to deal with.

At 63 I would think you have some findings on MRI, as they're sensitive to pick up microscopic changes and degeneration happens to all of us.

Neuropathy is bad. I know it's a struggle for you. We take our feet for granted.

There's a lot of info here, so take your time and look around.

Others suffer from feet issues too. I'm sure they'll be glad to share what helped them the most.

I'm so glad you come to our forum.

[Darlene]

Welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

You may want to check out this link on Peripheral Neuropathy. Hpefully that is the correct forum for you.

http://neurotalk.psychcentral.com/forum20.html

Again welcome, looking forward to seeing you around.

Darlene

[tingsdonwrk]

Hon you have been through the wringer...I totally understand the guilt thing...I was fed it like Pablum most my life. That hurts. you have physical issues. That is not your fault. I cannot imagine raising children at my time of life and with what is wrong with me...59 ( younger than you)...You are a Hero in my eyes, Hang in there and God Bless you.

[Grizabella]

Thank you for the warm welcome, everyone. And thank you for helping me to not feel so guilty.

My neurologist says I have bulging disks according to the MRI's he has on record. But my primary physician says I don't have by the MRI results he has. I'm going to ask my neurologist on Friday about it and see if he'll call my primary doctor. I'm tired of feeling like my primary doctor thinks I'm just trying to get more medication. I'm surely not. I don't want to be a zombie and I'm already on enough medication. I don't want anymore. I just want to be able to live independently and be able to go for "walks" and to the store and library and such without depending on someone else to take me or not being able to go at all.

When I first got this way, I spent a few years unable to sleep for the burning and not able to go do the shopping or anything I needed to do because I couldn't walk that far. The girls had to start doing the shopping when they were only ten and eight, bless their hearts, because I couldn't make it the four blocks to the store and back. Now I have more comfort so I can sleep at night, but the neuropathy has progressed to where I have so much pain in my back that I can't stand up long enough to do housework and dishes. The girls are pitching in to help really well, though, and that's nice.

When I finally got medical coverage through the Oregon Health Plan, I started out with a doctor here who put me on Neurontin. That made my legs swell up till they were like tree stumps and I started getting symptoms of congestive heart failure. I know what that is because I've worked in hospitals and adult foster homes--even owned one of the latter---and that quack tried to get me to continue increasing it! He said the patients he had who were on it said that the medication just made them THINK they couldn't breathe. He was in his first practice and I doubt he had a whole slew of patients on Neurontin since I was one of his very first patients. And I know when I can't breathe and my lungs are getting congested when I don't have a cold. So I switched to the doctor I have now who really listens to me and he sent me to a neurologist and then over the past couple of years, things have been getting better, thank goodness.

I guess my guilt over using the power chair is probably because I've never been able to just give myself any kind of break if I was sick or hurt. I always had to keep on going and not quit. It's like I'm feeling like it's too good to be true.

And I know a lot of people who can't walk at all wish they didn't have to use a chair and here I am, when I can still stay up on my feet, wanting to use one! But if I could have found a mobility scooter this cheap, that's what I'd have done. There's very little difference, after all, except for handlebars.

Another thing I'm dealing with though, is that with the power chair in the living room, it's hitting me more that I'm not and probably won't ever be again the person I used to be. Now it's like I'm kind of wimping out, isn't it?

[azoyizes]

Hi GB, and a warm welcome to you to NeuroTalk! This is a great place to hang out with lots and lots of friendly and caring people.

I'm sorry about your pain, and I'm glad you got yourself a power scooter!

[(Broken Wings)]

You're no whimp. It's overwhelming not to be able to take care of things yourself. The pressure and stress can overtake us sometimes. Even the strongest person will wilt under that much pressure. Those stoic advisers just never had our problems to contend with. If they had, they wouldn't be talking trash like that to people with our legitimate problems.

The power chair is your friend indeed. Be careful though, I don't want to hear about you getting a speeding ticket or running over a pedistrain.

It is freedom.

you go girl...

Originally Posted by Grizabella

Thank you for the warm welcome, everyone. And thank you for helping me to not feel so guilty.

My neurologist says I have bulging disks according to the MRI's he has on record. But my primary physician says I don't have by the MRI results he has. I'm going to ask my neurologist on Friday about it and see if he'll call my primary doctor. I'm tired of feeling like my primary doctor thinks I'm just trying to get more medication. I'm surely not. I don't want to be a zombie and I'm already on enough medication. I don't want anymore. I just want to be able to live independently and be able to go for "walks" and to the store and library and such without depending on someone else to take me or not being able to go at all.

When I first got this way, I spent a few years unable to sleep for the burning and not able to go do the shopping or anything I needed to do because I couldn't walk that far. The girls had to start doing the shopping when they were only ten and eight, bless their hearts, because I couldn't make it the four blocks to the store and back. Now I have more comfort so I can sleep at night, but the neuropathy has progressed to where I have so much pain in my back that I can't stand up long enough to do housework and dishes. The girls are pitching in to help really well, though, and that's nice.

When I finally got medical coverage through the Oregon Health Plan, I started out with a doctor here who put me on Neurontin. That made my legs swell up till they were like tree stumps and I started getting symptoms of congestive heart failure. I know what that is because I've worked in hospitals and adult foster homes--even owned one of the latter---and that quack tried to get me to continue increasing it! He said the patients he had who were on it said that the medication just made them THINK they couldn't breathe. He was in his first practice and I doubt he had a whole slew of patients on Neurontin since I was one of his very first patients. And I know when I can't breathe and my lungs are getting congested when I don't have a cold. So I switched to the doctor I have now who really listens to me and he sent me to a neurologist and then over the past couple of years, things have been getting better, thank goodness.

I guess my guilt over using the power chair is probably because I've never been able to just give myself any kind of break if I was sick or hurt. I always had to keep on going and not quit. It's like I'm feeling like it's too good to be true.

And I know a lot of people who can't walk at all wish they didn't have to use a chair and here I am, when I can still stay up on my feet, wanting to use one! But if I could have found a mobility scooter this cheap, that's what I'd have done. There's very little difference, after all, except for handlebars.

Another thing I'm dealing with though, is that with the power chair in the living room, it's hitting me more that I'm not and probably won't ever be again the person I used to be. Now it's like I'm kind of wimping out, isn't it?

[Grizabella]

Thank you so much! I don't want to be seen as a wimp. I'm so glad to have found somewhere that there are people like me who understand.

My mother has had rheumatoid arthritis since she was 30, but she'll miss out on things like the county fair or being able to go shopping when she's at the coast or anything else like that because she refuses to use a wheelchair. Personally, I think that's false pride. Anything that will allow for mobility seems much better to me. She just has to hobble in and sit somewhere, which keeps her kids and grandkids from enjoying things, too, because they feel guilty just leaving her behind and it's just because she refuses to be in a wheelchair.

[(Broken Wings)]

Maybe let her take yours for a spin...

Originally Posted by Grizabella

Thank you so much! I don't want to be seen as a wimp. I'm so glad to have found somewhere that there are people like me who understand.

My mother has had rheumatoid arthritis since she was 30, but she'll miss out on things like the county fair or being able to go shopping when she's at the coast or anything else like that because she refuses to use a wheelchair. Personally, I think that's false pride. Anything that will allow for mobility seems much better to me. She just has to hobble in and sit somewhere, which keeps her kids and grandkids from enjoying things, too, because they feel guilty just leaving her behind and it's just because she refuses to be in a wheelchair.

[Grizabella]

I don't see my mother very often but if I offered to let her take mine for a spin, she'd just scoff. I had to make the decision to keep my distance from my mother a long time ago.

Wow! I can see my replies right away now!