I am 77 years old and I have had Idiopathic Peripheral Neuropathy (for the past 10 years) and Essential Tremor (for the past 40 years.) At this point in time, both diseases are of unknown origin, progressive in nature, and incurable. If there is hope for me on either the Peripheral Neuropathy or Essential Tremor front it is with what is called a Pons unit, the full name of which is the Portable Neuromodulation Stimulator that is currently up for FDA approval. It has already been approved in Canada

 The Pons Unit is part of a new approach being studied for the rising number of patients who have experienced loss of function as a result of neurological disease or trauma.  That means us folks. As a result of disease or injury, many patients are left with disrupted neural networks in the brain that are unable to carry neural impulses completely or efficiently. Neural impulses are the signals responsible for directing the functions of the body, such as movement control or sensory perception. Researchers believe that significantly increasing the activation of these neurons through electrical stimulation, ie. the Pons Unit combined with targeted functional therapy, may help reorganize and reactivate the networks responsible for those functions

https://heliusmedical.com/index.php/divisions/neurohabilitation/the-pons-device

https://www.youtube.com/watch?v=NaEA1YQDmlE


The Pons unit is discussed in detail in Norman Doidge’s book  The Brain’s Way of Healing along with the topic of neuroplasticity.

https://tinyurl.com/y5m9nqsw

Neuroplasticity is a topic that deals with teaching the brain to find alternate brain pathways to do what the brain has formally done in a more customary or traditional manner.

The book proves unequivocally that cures are possible. I can’t tell you everything in the book but if you take the time to read it you will find that there is clinical based evidence to show that neuroplasticity is an important field in neurological medicine today.

On a related topic to Peripheral Neuropathy is the problem of balance. I find that due to Peripheral Neuropathy, Essential Tremor and also my age, that my balance when walking is a real problem.  Balance is of course a problem for everyone with age.

Females have a higher risk of falling
Adults who take more than 4 medications (or more) have a higher risk of falling
Antidepressants especially are associated with falling
Inadequate amounts of physical activity are also a cause.
Also Poor diet
Wearing inappropriate footwear
Center of gravity- many people no longer stand up properly, they lose the sense of what standing up vertically is and then develop abnormal standing postures.
 Gait training
- If a person’s gait is not optimal the greater the chance of slipping, tripping and being off balance in general. 
 Strength and endurance training is absolutely necessary.
As we get older we must work to ensure basic strength (especially in legs and core)
 Flexibility – we gotta stretch

However a balance problem is not something that one can address with just one exercise to cure. It requires multiple modalities or approaches in order to address it in a meaningful and ongoing manner. This is absolutely critical.

Things one can do to improve balance are:

I mention Tai Chi often in the group and really do find it useful.
Walk often and do try not to use a cane. If you use a cane the pathways of the brain will become dependent on the cane rather than the brain itself. I know this is absolutely true from my own experience. I used to need a cane when walking but stopped it for a while and have never gone back to it. We need to use our balance in order not to lose it. This is the concept of neuroplasticity in action.
Build up your leg and your body core muscles with daily exercises. They all matter when it comes to the end product of balance.
The overall approach that is necessary is one of using many different modalities or exercises. Going to YouTube and finding balancing exercises is easy. Now work them into your daily routine. Standing on alternate feet for extended periods of time or standing with one foot behind the other for extended periods also helps.
Diet and weight are also critical. Cj tells me that a decrease in weight makes balance while walking easier for him.
Posture also is obviously important. I have problems with that. The more I lean forward the greater the chance for falling. Keeping the head aligned with the pelvis is critical and we need to constantly actually practice at doing it.
It is easy to want to take long strides while walking, however, with age proportionally smaller strides while walking can help.
Also don’t forget to swing your arms during your walking workouts. I am always forgetting that but the forward motion of the arms can help greatly in keeping the body balanced.
Also a warning and it might sound trivial but beware: the bathroom is the most dangerous room in the house. At least according to the Centers for Disease Control and Prevention. It is very easy to lose balance when showering. So be careful.

In closing, I believe everyone with incurable diseases like Peripheral Neuropathy seeks the silver bullet for a cure. For me the silver bullet is embedded in support groups such as this one that bring people together to discuss what does and does not work with meds, therapies, etc.  Our particular support group is gifted with an excellent leader. He knows the medical stuff and is able to share it with us in a layman’s language.

So for me it is a true honor to be a member of this support group with the real warriors that have to go into battle each and every day. I thank Cj for being a wonderful role model and mentor. It is not easy. In fact I learn from you all each and every time we meet. Thank you.

If people have questions I would be happy to answer them.

Questions:

Has anyone ever heard of pins, needles, numbness in the tongue. I have it and it is new. It is called Paresthesia I wonder if it is related to PN.

Barlow Humphries, March 11, 2019

Peripheral Neuropathy and Balance Issues: A Solutions Based Approach Barlow Humphries