I don't have a normal life. My parents are old and my mother suffers with a rare foot condition which causes her to be crippled with pain. Burning Foot Syndrome is a rare condition which causes mom's feet to burn and she is often experiencing great pain. Heat, many foods and activity makes the feet worse, elevation of the feet and chilling makes them feel better. It a neurological condition which is related to the nerves or brain, and in her case likely came as a result as a toxic reaction to a medication she was taking. In her case, the syndrome came on suddenly and basically crippled her, giving her level 10 pain flares for the first year, which sent us to the hospital ER five times in the first year or so of her disease. With heavy duty pain medication, her constant pain was reduced to a level 7 from level 10, so now she only gets level 10 pain flares. The pills are never enough, and don't provide enough relief, environmental chilling is required, it's a very strange disease. Some people get this as a result of other diseases and some get it as a symptom or short term flare. Some may get this as a part of a different kind of disease, where they have hot foot like flares, but they may also have numb feet as well. So they have burning foot flares for example with diabetic neuropathy, but they don't constantly have burning foot flares. Some people have problems that cause "only burning foot flares" and they rarely have cold or numb feet. My mom has the HOT version with only hot feet and her feet are often sensitive to touch as well. Foods can also trigger reactions as well.
My father is quite old and less able to deal with taking care of my mom.
Because of this my normal life is very limited and HJRO and my astronomy hobby can take short amounts of time compared to other hobbies that require long hours and travel at times. Astronomy or star gazing can happen from you own back yard. Yes astronomy can require travel to better observing spots and take time. Better dark sky sites and observing away from the bright lights of the city can take a lot of time. But one can go out and observe the sky fairly quickly from your back yard, with a simple telescope setup or binoculars. If you are close to an active observatory, or have access to one in your area, it can make observing even easier. One great thing about joining a club, is you will find out where the club observes from, so dark sky site locations where other members observe is one perk. Another nice thing is you get to meet others who have the same passion for observing and can learn a lot about astronomy and about different kinds of equipment we use in this fun hobby.
Fortunately I've been involved with astronomy and been in the Ford Amateur astronomy club for some years now. Since 2009. And I'm able to get to the observatory and open up in about ten minutes, if the weather is permitting, with clear skies.
A hobby which takes maybe a few hours in the evening - even late at night; is a pretty good hobby to have and one can read about astronomy as well.
I used to be able to go to HJRO and sometimes spend an entire night there with the observatory open. Sometimes visitors would arrive late at night, and one night a visitor spent the entire night there, on his first visit. He later joined the club.
There are many interesting people involved in astronomy as a hobby in the club. This includes many engineers or science geek types and also some older members who have had a lot of experience in life with different hobbies. Older people also have had more experience in having dealt with health care issues with their own health or the life of their family. So they can at times can chat off the topic of Astronomy. About all kinds of subjects, including stories about health problems and operations they had, etc. and of course almost any scientific subject.
Some of the members of the club are doctors in the medical field that are into astronomy. At times I talk to doctors and they are interested in astronomy, but of course they don't have a lot of time, with a very busy life as that career can take up much of a persons life. In the Ford Astronomy club we have at least three doctors I know of, one is a MD, another an eye doctor and another a dermatologist. They may not always talk about doctor stuff, but at times they will get into health topics. One of the club members is a doctor and he is trained as a MD and has also been a veterinarian. Currently he doesn't have a practice as a doctor, practicing medicine, but he does business consulting.
Another doctor a visitor showed up at the observatory who is a foot surgeon. The three of us among other friends would spend time at the observatory and I would at times talk about my mother's strange foot condition. Dr. Timothy Dey is not commonly running around as a doctor, although he has earned that title. We know of him as Dr. Dey but other friends in the club usually call him by his first name within the astronomy hobby.
So the subject of my moms feet comes up at HJRO when I'm out observing, and mom will often call me about some real or perceived late night "crisis" at home. Usually it's some need for a pill or something she might want that my dad cannot do; because he finally passes out asleep. We have a very weird and long schedule at home. My mom often gets only three hours sleep at night. So we may be called anytime at night or even when she is supposed to be sleeping. Because she can barely walk, she needs a lot of help getting things she needs. My dad an I wait on my mom all the time. Providing every meal, for her for the past 14 years is one of the things we do.
Needless to say her rare foot disease is a big problem in our household. And it causes a lack of normal life. Normal activities and hobbies are often sacrificed.
Astronomy is a nice hobby however because you can do it late at night. If I have the energy and time late at night I can do astronomy. And it may be possible to do this while my mom sleeps and doesn't need much help.
So it's a good hobby to have if a person has a loved one who will allow them to get out for a few hours to observe.
About three years ago Dr Dey took some photos of my moms feet to post on some forums frequented by other doctors to show her rare condition. Burning foot syndrome only affects about 1.3 out of 100,000 people in the USA, so it's a fairly rare disease.
Dr. Dey mentioned to this other doctor we met at the observatory. Dr. Dey mentioned that he was going to stop by my house to take some photos of my moms feet. This of course is a far cry from astrophotography of course. Dr. Day said to this other doctor, "you might find it interesting to see what this foot condition looks like, because it's pretty rare." Doctors can be curious and find rare conditions something to chat about. Many doctors say they never saw this condition before and when they see my mom's feet. They say they will likely never see it again with any patient. So it's pretty rare and a curious thing to see.
So we had two doctors who I met through astronomy look at my mom's feet as Tim was taking photos of them. Mom's feet were propped up on pillows in a cold room. My mom has burning foot syndrome.
We live in a very strange house. Like a bubble family almost, especially at that time. Moms feet have to be chilled and air chilling with fans and Ac running is a part of our everyday life, for moms feet. They have to be cooled in some way because they go into a type of thermal runaway condition and even when they are normally warm they get hot, swell up and cause extreme pain. It's like my moms feet want to be colder than they should be. Th feet require chilling to have a low skin temperature, almost to a point of freezing, for a normal person. Like 80 degree skin temperature or less to reduce the constant pain.
Needless to say because this is a rare case, this rare disease destroyed our normal family life. So we adapted to this disease, and have a very abnormal life. Mom is often in extreme pain and driven to do things to avoid really bad pain flares. The pain she describes is like walking on hot coals. The pain is extreme and she gets other problems from compensation. By doing compensating things, she attempts to avoid more foot pain. She cannot have her feet down unless they are in cool water. Cool air and fans, cool water bathing of her feet in a shallow pan, or ice packs help reduce swelling and constant pain. Her feet often have to be elevated on pillows during both the day and night.
Imagine running a 24 hour a day nursing home with two people. That is what my father and I face each day. Mom gets to deal with our limited ability to help her and deals with staying in one spot most of the time and getting stir crazy. She often only goes out to a rare doctor appointment and stays home most of the time. She cancels most of her appointments away from home due to severe pain, so we can't even have a consistent life as a patient.
Dr. Dey and this other doctor who is a foot surgeon - were looking at my moms feet and this other doctor who happens to know a lot about feet tells me what he might do if it was his mother. He offers a rather radical approach as a way to help my mom deal with the pain. Because her pain is not something that can be cured. It is caused by permanent nerve damage, so there is no cure. There may be a way to cope with the pain better which is rather radical. It's a way to numb a nerve for each side using something called a tibial nerve block. It's a rather radical idea and would be like trading burning feet for a permanent numb diabetic foot condition.
Now this isn't a cure, and it's actually trading one kind of foot problem for another kind. A kind of artificial numb foot or foot that is partially numbed. It has never been done before for burning foot syndrome as far as I can tell. Something like this may be done for some foot conditions, but it's usually performed temporarily for surgery. Sometimes operations that kill nerves by cutting them are done for some serious pain issues, to stop chronic pain, but cutting a nerve is really radical. There is a way to medically kill the nerve with numbing agents, without cutting the nerve. Only doctors of course should do this and it's a radical approach. But many others who suffer from this rare condition have tried many things and often cannot solve their pain issues. They just live with the pain and adapt the best way they can. Some have even tried amputation and some with this problem have committed suicide, due to chronic horrible pain. So these are drawbacks to a very painful or bad version of the disease. Sometimes the disease is caused by some other disease and when the other disease is treated, the burning foot symptoms go away.
In any case I had these two friends who I met and they checked out and witnessed my mothers foot condition. They just looked at her foot and gave some feedback and thoughts. They didn't treat her as doctors or charge to treat her, they just shared some thoughts about her condition. So over time I thought about this radical option which was suggested by this other foot doctor. He could tell me about this idea, but he wasn't my moms doctor and she was not his patient. So this information is in my mind and I was able over time to mention this to some of my mothers doctors. Eventually I found a foot doctor she was seeing and my mom asked him if we could try this numbing of the tibial nerve method. This can be done temporarily to see how well it works and then be done more permanently. The permanent block involves using an injection or series of injections that kill that nerve either partially or totally.
The nerve may stay dead once it's killed or it may be eventually restored. One can cut the nerve as well with surgery but that is very radical and our MD didn't recommend this. In a sense this is almost like performing a type of amputation on the foot and gives risks of injury like a diabetic would have. It is not a cure, but a means to control the pain and reduce suffering. It's probably better than just using a ton of pain killers which never fully get rid of the pain. My mom typically has level 7 pain most of the time. But her pain is zero if her feet are frozen with very cold water, almost frozen to the point of frostbite. So the block is much like a constant freezing of the feet. Likely much better than any icing or chilling method.
Over time my mom has decided with our family that this is the only thing that may bring back some sense of normal living for her. It may make life more bearable. Mom is now pursuing this.
My father can't take care of my mom as well any more and this actually limits my ability to even observe from home or open up HJRO. So even my simple part time hobby has been affected. So I'm less able to open up the observatory and others, like Dr Dey or Tim Campbell may be opening up the observatory, while I stay at home helping out with our strange health problems here.
What is really interesting to me however is we are starting to do tests and finally go down the route of blocking the tibial nerve, at first with temporary tests. Mom has a home health care foot doctor who is willing to do the tibial nerve block tests and go that route. And as we move onward it's becoming apparent that this approach works for mom. It's not a cure, of course but will likely be a far better way to have more function and independence than any other medical solution we have tried. Hopefully once we go further down the road with the more permanent numbing of the nerve she will gain more independence and be in less pain. If these tests and this approach works it may restore a lot more freedom to our family, including my ability to observe at HJRO a bit more.
Ironically in a way astronomy may have saved our life. Or allowed a more normal life. Because it provided a way to meet someone who showed us a path that may help my mother cope with a bad medical situation.
We are of course talking about a new kind of approach to this rare condition. Some other people who suffer from this condition who have a really bad chronic version of this might also hear of our success. They may decide to try the same type of treatment, or path. Over the next few months I hope to know more about how this approach works. Our early tests have been mostly successful. Of course it's easy for a person to hope for to much progress very quickly with new treatment options. Mom doesn't walk much already, less than 25 feet a day on average. So even with the best results from the nerve block; it will take some time for her to get stronger and be able to gain more independence. It's difficult to say how much this will help yet, but the first three test blocks look promising. Hopefully I'll be able to get back into the hobby more and our family will gain a bit more independence.
Until that day, I likely won't be out at the observatory much.
I'm hoping to be involved with the Mercury transit coming up in May which is a solar viewing event. If we are able to open and we plan to open, we will be looking at the sun as Mercury passes over the face of the solar disk appearing as a small circle. With a safe solar telescope we will be able to show others this event from HJRO. Hopefully it will be a school activity, with many club members present with Safe solar telescopes.
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