Dear Eva,

Words cannot convey the huge amount of admiration and Love I hold for you.
I do understand you walk an immensely challenging path.

You are incredibly beautiful, in every way, and this is true even within your most challenging moments. When you write about feeling frustrated, overwhelmed, and dark moments, I feel your pain and at the same time, I see your beauty --the warm, bright light, the huge spark of Divinity which emanates from you.

The ability to know when and how to surrender is important to finding any level of healing, as well as critical to creating moments of Peace.

I read and re-read, further pondering your posts, as you are a gift unto all of us. I have much to learn from you and from all you share.

We are all One in the Spirit. We gather together to share our pain, our fears, our anxieties, our Joys, our Hopes, our Triumphs... and so much more. We gather together to support one another within the unity of this compassionate community. Many of us are truly "family" to one another, often a stronger and healthier family (in many ways) than the families we were born into.
Every member plays a very important role for the whole community.

Such a Blessing!



DejaVu

Depends on the individual and their neuropathy. Many have it and it progresses little over many years. That's not usually the folk here and in my research you are correct. Us with severe neuropathy don't often get better. I'm about where you are. I'm pretty certain that I'll be in the extreme pain group soon. I have no desire to live like that. That's just the way it goes.

I look at things this way. I'm mortal and I shall die from something no matter what. So by choosing the time of my own death I'm really not doing much to alter where I'm going anyway, just the timing. And I'd not do it at all if I wasn't in a body being tortured physically. I see no reason to consider that a life.

A warm hello to all.

I feel this discussion as very worthwhile, very important.

The bottom line is: These decisions to go on further and to see what happens, or to not go on any further, are very individual choices.

I honestly do not know it's possible for us to accurately predict the future.

Researchers had told me to go to pick out a powered wheelchair 28 years ago.
I had refused to do so. They were shocked by my refusal. I had even been referred to a psychiatrist because the doctors had felt I was in deep denial. It was their opinion I would not be walking at all within 6-12 months.

I was told, yet again, to go immediately to pick out a powered wheelchair, by a totally different set of researchers, ten years ago. I had again refused to do so. I had gotten quite a lecture about my "non-compliance" and my "denial" about the seriousness of my medical conditions. One researcher became very upset with my "non-compliance" in securing a powered wheelchair. I am sure he was concerned for me. He became quite loud and had said, "I don't know that you will be walking at all within the next 6 months." I had replied, "With all due respect, we honestly do not know that about you, about me, or about anyone else in this room today." (Two interns had privately thanked me after the meeting.)

In truth, if I had needed a powered wheelchair at any point, I would have had to order one to go anywhere.

This isn't about denial or non-compliance, it's about not allowing others' (including the experts') predictions/expectations (nor research statistics) to pre-determine my present day experience and/or my future.

If/when I truly need a powered wheel chair, I will then look into obtaining one.
(In truth, I am getting closer to having to think about this now, 28 years later.)

I now intermittently use one crutch, when I need assistance walking.
I use a wheelchair in airports (and/or in very large hospitals) when I cannot otherwise cover the distance or make my flight connection on time when in an exacerbation of pain/limitations.

My DH had asked me if I might want to start looking at powered mobility aids earlier this summer. He had a very serious look on his face as he brought me some of his research on various products. I had thanked him and told him I would review his research and would make a list of what I perceive to be viable options. We sat down to discuss this two evenings later. I thanked him for his concern and for his efforts. I then showed him my list. I had included a variety of options, contingent upon on the budget. I had found some very nice options locally: a customized Harley, a very sharp BMW, an awesome Honda Shadow (low-rider just like the one I used to have) and a Cam-Am Spyder. And so it goes.

Honestly, I will deal with adding to my mobility aids if/when I truly need to do so.

I have had 5 friends diagnosed with ALS. Two were misdiagnosed. Three were accurately diagnosed. One of these three followed the rapid progression type of course. The other two, 6 and 8 years later are living life with some effects upon them, yet still work, etc. All five were told they had approximately 3 years to live. Those expectations were erroneous for 4 out of 5 in this one account, and erroneous for 2 of the 3 properly/accurately diagnosed.

My point: I honestly do not think we (nor anyone else) can 100% accurately predict our individual futures.


Love to All,
DejaVu

P.S. I have had many awesome years of a deeply enriched life over the past 30+ years of medical disability. I had married 10 years into these challenges. Life was not over for me, despite what I was told by the "experts." Life had drastically changed, for sure. In some ways, life had just begun. It's been a very real and a demanding challenge much of the time. I have felt like quitting at times. Yet, I have also grown in so many ways. I do not know how this will turn out. I try to stay focused on the "Present Moment." In the end, I know I have done my best and that's truly the most each of us can do.

Sometimes the thought of one choosing their own time; when it is not; can change what you might have been able to do or be there for someone in need.

Yes, I have had days when fleeting thoughts of being tired of all of this enter my mind; but then something that I may have said or done that has really made someone's day; especially friends and family make me feel good about myself and know I am here for a purpose.

Also, I would be selfish should I be the cause of anyone possibly feeling guilt that there could have been something they said or did to cause such a choice.

Quality of life is different for all of us. Often our thoughts can pull us down or bring us "up".

Sending positive thoughts.


Gerry

Well to each their own. For myself once I start living for others at my expense I've become nothing but a prop for their lives while I lose my own. Not my path but I have no issue with others choosing it.

Very interesting thought. I guess either way, you would lose your own.
Thanks for your input.

Gerry

Keepin on keepin on. I must focus on one step, one day, one feeling that I matter and make a difference. We are community. together we make a difference.......
Yup

I posted earlier this evening on your other thread that I would remain silent hence forth but I have changed my mind after giving it some thought and re-reading the post you made when I first responded about a month ago.

Based on THIS post, would you mind sharing something with us about your neuropathic diagnosis, symptoms, and pain?

I respect your privacy and if you wish not to respond, I will certainly understand.

There is a BIG difference between diabetic neuropathy prognosis and the prognosis of PN from other causes and also of an idiopathic nature.

Many people here have idiopathic neuropathies, some from chemo, some from other drug induced causes. The types and causes of peripheral neuropathy are vast.

If someone has "diabetic" neuropathy, the prognosis is usually much better and the symptoms and pain greatly reduced by good control of blood sugar levels. Many have lessened their symptoms and even reversed the nerve damage.

If you have been diagnosed with "diabetic" neuropathy, your prognosis may be very good with proper medical treatment.

Do you know the cause of your PN? Are you diabetic? Are you levels under control? How long ago were you diagnosed? How long have you been experiencing symptoms? What are your symptoms? What body parts are affected?

Again, if you wish to keep this information private, I totally respect that.

We may be able to help with your PN pain based upon your response.

Mine is diabetic you are correct about lesser symptoms most of the time with control but not all the time it does tend to flair even under control much pain I might add so much I will put my feet in cold water for 5 min and take a Percocet. II would like to keep my reading at 95 and compare but it is a real challenge Intakes nothing to get it over the 95 range.


Uglogirl

You are not alone. I am a retired p.a. I have found personally there is only one thing worse to live with. Foe me it was very severe Tinnitus i.e. Ringing in the ears so bad that I could feel the hair cells in my ear vibrate for 5&1/2 yrs. But this Neuropathy is not nearly as bad. Hang in there a little longer. I cured my own Tinnitus while being told all along (you just have to learn to live with it) Being a p.a. & working in the Medical field. Don't give up just yet. But I must admit there are a lot of times I think of it to. Just be strong if you can.