Bob Cervoni · Hicksville, NY
Scheduled for spine surgery, Bob was diagnosed with peripheral neuropathy instead. Five years on, physical therapy is what keeps him on his feet.
“Keep moving, and do not let the disease depress you.” Bob was days away from spine surgery when two last tests found the real problem. Five years later nobody knows what causes it, it is still progressing, and he rarely falls. All three are true.
The full interview, 30 minutes. Nothing loads from YouTube until you press play.
In 2020, Bob was 70 and driving upstate as often as he could. The first sign that anything was wrong was small enough to explain away: a pain in his shin when he lifted his toe to work the gas pedal. It got bad enough that he started accelerating with his left foot, which, as he puts it, got a little dangerous.
An orthopedic doctor thought it was a slipped disc, some form of spinal stenosis. Bob was treated for that for months, including two rounds of cortisone injected into his spine. None of it helped, the numbness in his toes spread, and he was scheduled for spine surgery.
Two tests ordered in the week before that surgery are the reason this story reads the way it does. One checked the circulation in his feet, which was fine. The other was an EMG, which measures the health of the nerves themselves. The neurologist who read it told him the problem was not his spine at all. He had peripheral neuropathy.
Bob had never heard the words before. The spine surgery did not happen. What started instead was a five year search for a cause that has still not been found.
Diagnosis was slow, partly because it was 2020 and appointments were hard to get, and partly because peripheral neuropathy is a description of what the nerves are doing rather than an explanation of why. Bob went through more blood work than he knew existed, DNA testing, and a spinal tap.
His neurologist was honest about the limits of his own experience. Bob remembers it word for word: I see one case like yours a year. I am going to send you to somebody who sees five cases before lunch. That referral took him to a specialist in the city who had written books on the condition.
The testing narrowed it to one candidate. Bob was pre-diabetic, and neuropathy is common in diabetes and can appear before the diagnosis is official. The advice was straightforward: get the A1C under six, keep exercising, and this will not get worse.
Bob did it. He lost 40 pounds, brought his A1C into the normal range, reduced two medications, and started wearing a glucose monitor. It improved his blood pressure and most of his blood work.
The neuropathy kept progressing anyway. That moved him into the category roughly a third of patients end up in: idiopathic peripheral neuropathy, where nobody can say what is causing it. As Bob says, had the diagnosis been correct he would have been thrilled. Instead there was nothing left to treat.
What he tried next is the part worth reading if you are early in this. Acupuncture helped somewhat. Red light therapy and a long list of creams, pills and supplements did not, and cost a great deal of money. The nerve pain that started it all actually faded on its own. What replaced it was the thing that actually threatens a 73 year old: his balance went.
This is the honest part. Two years in, the ankle has not got stronger and the foot does not lift any higher. Dr. Haschemi says so on camera. Nerve damage of this kind does not take instruction.
What did change is everything above it. Bob now uses his hip and knee muscles to do work his ankles cannot, and the upper body strength he never had time for in a clinic is what lets him catch himself. The deficit is unchanged. What it costs him is not.
Most fall prevention advice is a list of things to stop doing. Bob got that too, and he follows it: no ladders, no kneeling straight down at church, a walking stick on uneven ground.
But a trip you can recover from is not a fall. He and Dr. Haschemi rehearse the recovery itself, the stumble that does not finish on the floor. Bob rarely falls now, and he is specific that it is awareness plus training, not luck.
Bob started in a standard clinic: exercises assigned by a therapist and run by an assistant, with the therapist changing regularly. He calls that phase commercial, and he means that nobody there knew him.
With no scan to point at the problem, treating neuropathy means trying something for a fortnight and measuring what happened. That only compounds if the same person is doing the measuring. Going from once a week to twice a week is the other change he names.
“Probably out of everything I have done for this disease, the ongoing physical therapy has been the thing that has impacted me the most in living with this problem.”
Bob is clear that he is fortunate. He has space at home set up with the equipment his sessions need, so the physical therapy comes to him.
That matters more than it sounds. Add up his week: physical therapy twice, massage once, acupuncture once. For someone whose balance is the presenting problem, every one of those appointments is also a car park, a kerb, a waiting room floor and a corridor he has to walk down slowly while somebody waits at the other end. The treatment is the easy part. Getting to it is what people quietly stop doing.
And stopping is the thing that costs. Bob's own warning is that whatever you can do early to slow the progression buys you years of a better life. A plan that is realistic twice a week beats a better plan managed once a month.
That is the reasoning behind Strength Works PT working as an in-home physical therapy practice across Nassau County. For a progressive condition, care is not a course of visits that ends. It is ongoing work on balance, strength and walking that has to stay sustainable for years, which usually means it has to happen where the person already is.
Bob is 73. He has idiopathic peripheral neuropathy, it is still progressing, and nobody has been able to tell him why. He wears a brace on the leg with more foot drop. He walks slowly. He will use a walking stick in the woods but is, in his own words, too proud for a cane.
He also rarely falls, his balance has stabilised after years of decline, and his physical therapist puts his function above most 70 year olds without a neurological condition. He gets off the ground onto his own two feet, which Dr. Haschemi says he has not seen anyone else that age do outside of training.
Both of those paragraphs are true at once. That is what living well with a progressive condition actually looks like, and it is worth saying plainly, because the version where someone is cured would be a more enjoyable story and a less useful one.
“Keep a good attitude. You got this. Do not let it win. You win.”
If you or someone in your family is living with peripheral neuropathy, balance problems or foot drop anywhere in Nassau County, the first conversation costs nothing. Call (516) 357-4247 or get in touch, and read other patient stories as they are published.
Said: This is a series where people who have experienced injuries or surgeries that affect their day to day lives share their experiences. We dive into their stories, talk about what they have endured, how they have responded, and see where they are now.
My name is Said Haschemi, doctor of physical therapy and founder of Strength Works. I am here today with Bob Cervoni. He is a retired financial executive, and he is living with peripheral neuropathy affecting his lower legs, diagnosed around 2020. Bob, tell me a little about what is going on.
Bob: Well, Said, it has been quite the journey. It all started back in 2020. The very first symptoms I had were pain around my shins when I was driving upstate to the country. I made that trip pretty often, and I found that raising and lowering my toe to work the gas pedal was giving me pain in the shin. So much so that at times I actually used my left leg to accelerate. It got a little dangerous.
I ended up seeing an orthopedic doctor who thought the problem was maybe a slipped disc in my spine, some type of spinal stenosis. He treated me for that, including injections in the spine for the pain. Finally, when I told him I really could not deal with the pain anymore, and I was starting to get numbness in my toes, he scheduled me for surgery.
But before the surgery he said, I do want to do two final tests. One is circulation in your feet. The other is an EMG, where they study the health of the nerves in your feet. He sent me to a neurologist for that. The circulation was fine. The neurologist was the one who said, you have a real problem with the nerves in your feet, and we think you have peripheral neuropathy.
I knew nothing about it. I had never heard of it before. And there started the journey to figure out the cause and what could be done for it.
Said: What was your level of function at that time? What were you doing?
Bob: Right at the beginning it was minimal, just occasional pain in the shin. But along the way the numbness increased, and the true neuropathy pain, the tingling and burning, especially when you go to bed at night. That increased, and it really affected the lifestyle I had.
And by the way, all of the diagnosis was very slow, because this was during COVID. It was hard to get a doctor's appointment, and you probably did not even want to leave the house at that time. It took a while, and I think that added to the progression, not being able to do anything about it.
Once I got diagnosed, that started a whole battery of tests. More blood tests than I knew existed. A spinal tap. DNA testing. A whole variety of things, to try to figure out what was happening.
Said: Let me stop you there and take a step back. You talked about how it affected your lifestyle. What was your lifestyle before all of this pain? What were your go to hobbies, the things you have to think twice about now?
Bob: I was an avid walker and hiker. I spent a lot of time outdoors, fishing, hunting, riding ATVs, that type of thing. As the disease progressed it started to affect balance, and that is when things took a significant turn.
I was fairly active when I was younger. I played racquetball twice a week until maybe my fifties. I am 73 now, so that was quite a while ago.
Said: With peripheral neuropathy affecting the lower legs you are going to have some loss of strength. Foot drop is the name everybody hears, and with foot drop you are going to experience some falls. Around that time, was that a big issue?
Bob: I fell a few times early on, because you are not aware of how the disease is affecting you, so you go about your normal routine. Then I found that if I was wearing a soft rubber shoe and walking on a tile surface, with a little bit of foot drop, you catch the floor and fall.
Since then I have become so aware, and with the training in physical therapy that we will get into, I rarely fall now. But I am focused on it all the time.
Let me add something. When the neurologist saw there was a problem, I will never forget what he told me. He said, listen, I see one case like yours a year. I am going to send you to somebody who sees five cases before lunch every day of exactly what you have. So he sent me to a specialist in the city. This man specialises in this. I have read books he wrote. I started joining organisations that had panels and discussions about it, to understand what this disease was.
After all of the testing, they narrowed it down to one potential cause: the fact that I was pre-diabetic. It is very common in diabetics, but as a pre-diabetic you can get the symptoms without being a full diabetic. So we went down the protocol of making sure your A1C falls below the normal ranges. His advice, and he was rather proud of it, was: keep your A1C under six, keep exercising, and this will not get any worse. It may get a little better.
Well, that was not the case.
Something like 30% of people with peripheral neuropathy do not even know what caused it, and they do not know what to do to make it better beyond the general things. Low sugar, exercise, physical therapy, balance, gait training. People try acupuncture, chiropractors. And then there is a whole slew of people trying to sell you creams and pills and supplements that are supposed to help this, and very few of them do anything at all.
Said: The general rule of thumb is that if something really does work, there is usually a big wall of bureaucracy behind it. You need a licence to even refer it. Most of the time these things are either placebo, or they just do not do as much as we want. But you saw a lot of doctors. How was that process?
Bob: Had the diagnosis been correct, I would have been thrilled. But with what they call idiopathic peripheral neuropathy, where they really do not know the cause, it is very tough. That is disappointing.
As a matter of fact, the doctor was surprised. As this progressed it really got into balance issues. That is the main thing. The nerve pain I had early on actually subsided a bit.
I have tried everything. Red light therapy, everything you could imagine, and spent a lot of money doing it. None of it really worked. The things that worked best were the physical therapy. The acupuncture helped somewhat. Losing weight helped a lot. Right now, maintaining balance is the big thing.
Said: Was losing the weight more about the pain in the foot, or about agility?
Bob: No, it was from a health perspective. By losing the weight you can maintain your glucose levels lower and more easily.
Some people say alcohol is a big problem, but there are so many different types of peripheral neuropathy that you do not know where they are coming from. I am not a big drinker at all. A glass of wine with dinner, maybe one cocktail, a couple of times a week. That is all.
But you have to keep moving, and you cannot let the disease depress you. You have to be a glass half full kind of person. I am happy for what I do. I am happy that I can lead a pretty normal life. My loved ones are understanding. But if I have to walk down to the mailbox, it is a chore. I do not like walking now. You do it when you have to, and you get your exercise otherwise.
Said: Did you ever try anything to help with the walking, like a cane or a walker?
Bob: I currently wear a brace on the leg that has a little more foot drop than the other one. A cane definitely helps, but I am too proud at this point. I can do without it. If I am outdoors, or in the country walking in the woods, or on any kind of uneven surface, I use a walking stick. It helps tremendously. But I am not quite there to take out a cane and walk with it. I feel like I am handling it for now. I just have to be very careful.
And I walk very slowly compared to everyone else. If you go to a doctor's office and the nurse is leading you to the examination room and she is halfway down the hall while you are trying your best to keep up, it is a little embarrassing. She turns around wondering what happened to you.
Said: They are usually running at 150% throughout their day. Was surgery ever an option?
Bob: No. There is no surgery for peripheral neuropathy that would help. There would have been surgery if it was spinal stenosis. They could have corrected some of the disc.
In all the books you read they say, listen to the good news, you are not going to die from this. You might trip and hit your head, but you are not going to die from this disease. It is not terminal. But if it goes untreated, and you do not take care of yourself, you could end up in a wheelchair.
Said: You said you lost a good amount of weight. How much are we talking?
Bob: Forty pounds, from my highest to where I average now. It has made a difference in blood pressure and just about everything.
Said: Did that change your blood work, your A1C?
Bob: Everything improved a bit, and I was also able to reduce medication along the way. Cholesterol medication, diabetes medication. I wear a glucose monitor now to keep close tabs on it. At this point my A1C is normal, and I am able to maintain normal, and I still have some progression. So there is something else going on. We are not quite sure.
Said: Like I said in the introduction, a journey. That is how a lot of these conditions can be. When you label something idiopathic and try to find the source from that point, it is difficult. Seeing it progress even though you are taking all these actions can be disheartening, a little disconcerting. But how have things improved over time with some of the actions you have taken?
Bob: The positive side is that after the downturn in balance and stability, it has stabilised. The exercises we are doing together have certainly helped that tremendously. It gives me more confidence. Even if I am going to fall, we have practised how to recover from that trip, so you are not really going down to the ground.
There are certain things you just do not do. I do not kneel straight up at church any more. I lean on the bench a little. At my age it is difficult for me to get down on the ground, as you have seen, and then get back up again. It is not like when you were 20 or 30.
Probably out of everything I have done for this disease, the ongoing physical therapy has been the thing that has impacted me the most in living with this problem.
Said: Physical therapy, like weight loss, can affect things indirectly in a lot of positive ways. A lot of people with different conditions are losing function, and once you get started with a routine and break the ice, things feel better.
Being your physical therapist and trying our hardest to see if we can make a difference here: it has not changed in terms of muscle strength in that area. The foot does not really go much higher. The fluctuation has stabilised. Sometimes we lose your toe, where it does not move, and sometimes it does really well. But what I will say is this. Everything else has got a lot better. Your ability to move, your ability to use all of your hip and knee muscles to counteract the weakness in the ankles. That has made a huge difference.
You have had a journey with physical therapy as well. How long have you been doing it?
Bob: Shortly after the initial diagnosis. Remember it was first diagnosed as spinal stenosis, and they sent me to physical therapy for that, so the treatment was a little different. And then the cortisone shots in my spine, which were all a waste, because it was not my spine.
Said: Did you have back pain?
Bob: No, there was no back pain. They felt something in the back was causing the pain down here. A pinched nerve. Where they thought the spot in my spine was, that is where they injected cortisone, twice. That was not a pleasant experience. It was almost like the spinal tap, when they took spinal fluid to analyse it.
Said: You went through a lot of diagnostic measures. A lot of screenings and scans. But you have been doing physical therapy a long time. How has it changed, aside from the diagnosis changing? What were the exercises in the beginning, and what are you doing now?
Bob: It went from a more standardised clinical kind of thing, where an assistant worked the exercises with you and the physical therapist assigned them. It was not as specialised as it is now. And we had basically no time to do any upper body, which I think helps, because if you were to fall you have a little strength to control yourself.
So in the beginning it was very commercial. Then it became a little more specialised. And since I have been working with you, and also the physical therapist kept changing before, now working for a period of time with the same person who really gets to know you and understands your weaknesses, I think that has benefited me quite a bit.
Said: As your physical therapist I would say that gives me an advantage, because we have tried things. That is one of the difficult parts with physical therapy. Not everyone does X-rays or ultrasounds to find a direct reason. A lot of the time we have to try something for a couple of weeks and see how it goes. Span that across the two plus years we have been working together, and that has made a really big difference in being able to focus on the specific problems you are experiencing.
Bob: So that is something you would recommend someone do, stick with a physical therapist if you can.
And I am lucky enough to have a sort of home facility that allows us to have all the equipment we need here. Some people may not be able to do that and have to go to a place. But if you can go somewhere you can stick with the same person, and try to see them twice a week, that is also something I think has helped. In the beginning the physical therapy was once a week. I get a massage once a week. I do acupuncture once a week. When we increased the physical therapy to twice a week, I feel that has really helped quite a bit, and I have seen a change in that.
Said: The physical changes take time. It is not like a surgery where you do it and you are done. You start a routine and things start to feel a little better. And the thing that is harder about it is that as you get better, the amount of time it takes to see bigger changes also extends.
Thankfully I do not believe you fall too much any more. Only in specific circumstances where you are challenging yourself a bit more.
Bob: Remember, anybody, a totally healthy person, could slip and fall because of the environment. Those times have been a true slip and fall, and I just happened to be there. But the degree to which I take precaution is a lot more. Watching somebody go up a ladder, I avoid ladders totally, but watching somebody go up and then come down, I think, I would be so careful coming off that ladder. You definitely have to change your lifestyle and modify the way you do things.
Said: That brings up a thought about your age group. The medical field is really concerned with falls, to the point where they are almost fear mongering people into avoiding everything to avoid a fall. When in reality, for the average adult, including people who are 30, 40, 50 years old, statistics go to show that if you are all in a room, three people, one of them is going to fall in the year. 30% of adults fall at least one time in a year. So it is not really something you can avoid.
Which goes to another big benefit of the exercises. Aside from the balance, aside from improving some of the strength, you are more resilient. If you do experience a fall you can bounce back much faster. And if you do experience an injury with a fall or an accident, you can bounce back much faster.
Bob: At my age, I have noticed that many of my friends have falls. They definitely fall. You have known them all your life and all of a sudden it is, I fell off a ladder, or I fell off a step stool, the step stool went out from under me. And you go, here we go again.
I do not know what happens, but even without peripheral neuropathy, just speaking generally, once you get over that 70 mark, and when you get to 80, you are not doing too much, but you fall. And after 80 you are breaking your hip, and it could be the end, because it is a very tough recovery.
Said: If I have not told you already from some of the sessions we have had, age is important when it comes to specific risk factors. But at the end of the day I would put you, with your peripheral neuropathy and your limitations, above a majority of 70 year olds, because of the things we do with the exercises. Outside of the training I do, I do not think I have ever seen a 70 year old come off the ground with their own two feet and land back on their own two feet. Jumps and so on. That is a pretty big deal.
I do think how you live is how you are going to be expected to live. The lifestyle you try to maintain is going to be a big factor in how much you are able to do. You cannot stop everything. Idiopathic peripheral neuropathy, who knew that was knocking at your door at the time that it did, and who knows what is to come for anyone. But we all have a decision about what we do with the 24 hours that we have. As long as you make the decision to try, you will get something out of it.
You have experienced a lot of ups and downs. A little better, a little worse. For the most part better. What advice would you give to people who are experiencing this, maybe right at the beginning?
Bob: I would say find a really good neurologist. Get the testing. And do whatever you can to keep moving and keep a positive attitude. That is your basic. Everything else is one off.
Yes, I have found several supplements that I think help. I have found creams that calm the burning at night. There is still some burning, but it is not to the point where it is keeping me up at night. I am lucky. I have never taken gabapentin. I have never taken Lyrica, or the other drugs they use for this, because they have pretty serious side effects.
Get help right from the beginning. Take it very seriously, because it will progress, and whatever you can do early to slow that progression gives you more years of a better lifestyle.
Said: Is there a shining light through your experience, the main thing you go to when it comes to staying on top of everything?
Bob: Reading, and joining the chat groups, and understanding what other people are going through. There is the Foundation for Peripheral Neuropathy, which has periodic seminars you can go to. All of that really helps. Knowing other people are going through this, reading books about it, just becoming knowledgeable.
And hopefully someday there is a breakthrough where they can regenerate these nerves. Maybe not in my lifetime, but sometime there will be.
Said: The medical field is expanding faster than we can see it. Stem cells, certain things on the horizon that might be very helpful. Any breakthroughs the doctor might have mentioned?
Bob: No, there is nothing right now. Every now and then you hear about a supplement, like Lion's Mane, or some other supplement where they are having positive results. But everybody is different. If Lion's Mane helps two out of a hundred people, well, that is two people who have been helped by it. So you try things, you see how it affects you, and you go on. I basically take a handful of supplements every morning. Most of these are not from the doctor. They are from reading what works for other people and doing research.
Said: I am a big proponent of trying something as long as it is not harming you and it is not causing you significant difficulty to get hold of. If it is out there and people are saying it might help, especially people who are experiencing it, it is worth trying. Nobody knows everything.
Bob: A lot of people now are pushing peptides. I do not know too much about them, but I am starting to see it come up, and there are certain ones that are working and not working. I am keeping my eye on it, but I am not ready to jump in yet.
Said: If it was something you would benefit from, I would give the benefit of the doubt to the neurologists and doctors you are seeing to determine that. We have discussed a lot. Is there anything you would like to put out there before we finish up?
Bob: Just this. If you end up getting this disease, read everything you can. Be as knowledgeable as you can. Buyer beware on all the crazy stuff that is out there. Get yourself a couple of good people. Physical therapy, massage, acupuncture, chiropractor. These people would definitely help. Evaluate who helps you the most, keep those, and move on from the things that do not work.
Watch your diet and see how your body reacts to what you eat, then avoid the things that do not agree with you. If you eat something once and your feet hurt, and you eat it again and your feet hurt, well, maybe you should not be eating that. Everybody is different.
And most important, keep a good attitude. You got this. Do not let it win. You win.
Said: I appreciate the time, Bob. Hopefully I will see you getting stronger in the future.
Bob: My pleasure. And thank you for all you do for me.
Every recovery is different. This is one person’s experience, not a prediction of what physical therapy will do for anyone else.
