If you are living with MS, what are others inheriting from you?

Thanks, Benjamin. This is a very encouraging read. I am yet to have children of my own, and truthfully, I have been worried about the outcome of the probability of MS. I find this column balanced with truth and filled with bravery. I may just get Mccarthy's book! Like you said, we may never really identify what trigger caused MS, especially when there is no family history of the disease.
I find it wise to spend the time we have learning how to move forward than trying to figure out what went wrong. Besides, MS already happened and I can't give it back. I'm definitely looking into my future with glee, truth at hand, and bravery in my heart thanks to this read. Keep writing Benjamin. I yearn to read and learn your mind.

Benjamin this is now more than ever a worry I have. My son is getting closer to the age I was diagnosed with MS. Unfortunately my younger sister also has MS and a more progressive case. I remember my son crying when he saw me with an IV in my arm. Not getting my medication but saline for dehydration because as a surgeon I worked hard to be the best doctor but also a caring father doing night feedings and changing diapers. He knows all too well what I go through now disabled and retired with significant cognitive challenges. He is now starting out in his adult life with a wonderful new job and great friendships and I pray he will never experience this disease.

Hi Benjamin,

Everything thing you wrote was BANG ON!, I was diagnosed with MS 9 years ago, and like many read read and read. Congratulations on writing the most balanced piece of work that I have ever read ( most reads are medial or glossy stories ) You are dead right in relation to how we present to our children and how we are often perceived and times making the invisible more invisible. The importance of leaving an honest inheritance is times of hardship is definitely something we can all inspire to do. Take care and thanks for sharing.

Thank you for another excellent column. I always appreciate your words because they are honest and, in their authenticity, they are deeply comforting.

As usual your perspective regarding MS is greatly appreciated. My children can not deal with my reality. Im not sure why, but I believe it frightens them. As always thank you for sharing.

There serms to be a genetic rellationshio with MS and Celoac disease in my famiy. Brother had MS and I
Have Celiac disease as do my choldren. Ciliac disease in the U.S.is seldom diagoised as not offocially recognized by insurance or the AMA. Europe and Canada ahead of U.S.

5000IU vitamin D3 per day (or sunshine) is meant to help avoid developing MS for children of people with the condition.
Mine were in their 20's when I was diagnosed and likely stopped taking it after they left home!

I always remember an episode of Touched by an Angel where a father had motor neurone disease and was going to kill himself while he still could and not burden his son. Enter Angel who showed him that was selfish as his son only saw bravery in how the father was dealing with this disease and he would rob his son of this lesson. I hope i am passing on the same message to my 5 children that no matter how bad it gets that I'm brave enough to carry on with it every day and ask for help when i need it.
diana

I thank you also Benjamin. I have read everything I can about MS and tried to assess what may have triggered mine. The comment about the concussions certainly makes me ponder this effect. I know I've had at least two- - one from a minor car accident but one from landing on my head, waking in a pool of my own blood from rocketing over my bike's handlebars without a helmet. This was 2 weeks into my Freshman year of college. My MS attacked at 31 and it was severe enough that I could not stay awake. I only remember trying to explain why I was there at the Hospital desk and waking when I was told to turn over for the spinal tap.
I provided almost a decade of service to the government, using my Math brain, but I had to retire because of my freakish heat sensitivity and what was then labelled "severe Cerebral volume loss" in my MRI reports. I also have an aggressive version, so aggressive that without MS immune modulators/suppressants I get a new lesion every week.
In any case, the aggressiveness of my MS and the economic consequences made me unable to have children with the love of my life, my husband. The guilt over this has destroyed me too many times. If nothing else, I try to keep my sisters informed about possible MS triggers - both for them and for their children. I'm also the only one in my family with MS, but my father has been diagnosed with Lupus - by some doctors at least. If nothing else, I think immune sensitivities run in my family. I have taken better care of myself than in anyone in my family; I've eaten the cleanest diet and it was only the hospital bed that kept me from my daily exercise routine.

Both of my parents had active MS when I was conceived. They ended up being quadriplegics. I was diagnosed with it at 40 years old. I’m 77 and thankfully doing well

I was diagnosed with MS over 30 years ago, when the youngest of my 3 children was a baby. I was fortunate to be able to move around for the first 20 years, declining little by little until I advanced to SPMS. I've been in a chair for several years now, and my kids, like yours, had a front row seat to my decline. They are adults with families of their own now, and I believe growing up with a mother with disabilities has had a positive effect on them. They are caring, helpful, flexible, and patient. They're quick to notice when someone could use a hand, whether it's me trying to wheel up a steep ramp, or our elderly neighbor taking groceries out of her car, and they're quick to help, They act without calling attention to themselves or the recipient of their assistance. They move through their world automatically, unobtrusively helping those around them, as though they're not doing anything special. This awareness of other people, this feeling of personal responsibility, is a legacy I leave my children; this is something they have gained by living with me.

A little late on this… No kids of my own, so don't have the applied experience to make a judgment. As a psychologist, I'd say having the conversation about genes is fair and a responsibility, somewhere perhaps around 13 or so when other of life's issues start to become more pressing.

What is it, something like 220 genes now? Any sufficient combination. They are the reasons why concussions, EBV and other infections, physical health, perhaps smoking, VitD and all the others, may have made a difference in your eventual manifestation of MS and why others with the same exposure do not have MS. I do skim research discussions on Barts MS Blog, and while the minutia is always too much, it is very apparent how many times genetic variations are cited as contributing to immune system dysfunction. So what to tell your kids? What should they do or not do?

In my opinion, if you have the genetic booby prize, you'll probably find out. How much you want to revolve your life around that by doing or not doing things is a personal question. Perhaps what is most important is to be aware that such and such a symptom is not something to ignore; needs to be tallied, and a specialist should be seen the sooner the better. Don't wait 15 years. Diagnosis is not the end of the world and one can be an example of that. Then a deep dive into the FACTS is needed.

Benjamin, i too have MS and was diagnosed about 30 years ago . The neurologists were not sure if I had a brain tumour or MS as in the tests that were taken the areas in questiom showed large circles around them. i was given a brain biopsy that confirmed that I had MS. They said that they wished that I had a brain tumour because they could remove it. I had just started working full time again since my two sons had just started school. I had to quit my job because the extreme fatigue overpowered me. i partly blamed myself because I looked after everything in our family. The kids , the cleaning, the groceries, our finances,etc etc etc. i did everything in my life and even after I got married and didnt think twice about it until I was diagnosed with MS and just couldnt do everything anymore.. i was more concerned about my husband because he hates hospitals and everything associated with them. He was later diagnosed with depression but is on medication to help it.. I was concerned about my two sons because they were in the beginning of their lives and I wanted to be a big part of it. So I immediately searched everything that I could find out about MS and was sent to the London Ontario MS Clinic. They started me on Anti inflammatory medication abd steroids to help with the swelling in my brain around the Myelin spots. It took time before all of the swelling fully went away and my speech went back to normal, my walking got alot better and I didnt sleep half of the day. I went to an MS group meeting to learn more, I wanted to know what the worst of the worst was with MS and if I would be that person to get the worst.??? would I be in a wheelchair soon? Would my husband leave me because this would be too much for him to handle? how will my boys deal with this? would they get MS too later in their life..Educating myself about everything that I could find helped me deal with my diagnosis. My husband deals with everything the exact opposite way that i do. He doesnt want to know anything.Its overwhelming for him. So I now had to help my husband deal with my MS in a way that would benefit him too. I didnt stop giving him information but I limited it to only absolutely necessary details regarding my present health such as medication that I was taking and if I needed him to do something specific because I couldnt.. I talked to school teachers and Hockey Coaches about my MS and asked them for possible help for my sons if I wasnt able to drive them to practice or games etc. My husband worked afternoon shift as a Transport Driver so he wouldnt be around during the week but would be around on the weekends. We were very fortunate that everyone offered to help if we needed. Living in a small town does help too. A few years later I lost my sight in my left eye and had constant headaches. The London MS Clinic started me on a new medication and I also agreed to go on Research Trials too. I believe that the only way to help myself was to help in the Research for this disease. they were surprised that I agreed so quickly and had no reservations about being involved with the Research. Not everyone sees Research the same. If I cant go out to work I could still participate in something that could benefit so many people with MS or other diseases. My husband had no problem driving me to London every two weeks for check ups related to my new medication or specific trials. Driving is his thing and it helped him participate indirectly. Throughout my life my father looked up everything related to MS but unfortunately couldnt really help me because his own issues with Alcoholism stopped him from even looking after himself and his body eventually exploded one night and that was the end of him. i learned from his excessive drinking early on in my life that I would not be like him for my own health benefit and I still stand by that. .Next was my mom who ended up with Lung Cancer due to years of smoking and working in a factory with asbestos.. They were going to remove one of her lungs until they operated on her and found that both lungs were severly affected, she was very concerned about me and my MS but she also had her own health problems to look after too. I never smoked either after seeing my mom smoke and hating the smell. Then they band smoking from the workplace. I was happy with that decision.
I do my best to eat healthy and keep active. No I am not perfect in these ways but I never stop trying. I also keep up on the latest information about MS .My sons have grown up and moved out . They have their own lives now and so far no MS has shown up. I know that MS is more prominent in Females than Males but just the fact that it is still affecting anyone is a concern. I stayed as positive about my MS as I could throughout for my benefit and everyone elses including those that have MS who only see the Negative Side of it. Sometimes if you smile at someone they just might smile back!!! all the best for everyone who is living with MS.

Brilliant and profound. Love your perspective and insights. MS make us so insightful about the meaning of life and how to parent empathetic kids. It was costly life experiences for me; Selfishly, I'd rather have been a worse, but healthy, parent. To not use our pain to help shape the next generation would be a waste of the main usefulness of this crappy MSfortune.

Bravo on your insight and clarity. I appreciate what you feel and I only have one wonderful daughter, but try my best to show her how i must show up for myself on good and really bad days. I truly believe demonstrating how we deal with all aspects of life is important. You and your wife are courageous, smart and compassionate people. You have taught your young men everything about relationships and life!