Passed Down

I know the complicated emotional response to a devastating neurological condition passed down in a family. I am in the third generation struck by MS in my family. I understand the fear and the guilt that do not go away.

It was with special interest that I read in washingtonpost.com Carl Luepker’s account of the neuro-nightmare that hit him and now his son, Liam. Carl lives with Dystonia, a painful neurological condition. “For the past 35 years, a relentless neurological disorder has taken over my body, causing often-painful muscle spasms that make it hard for me to walk and write and that cause my speech to be garbled enough that people often can’t understand me.”

Liam inherited the gene and is facing the same grueling ordeal. “As a parent, you hope that your child’s life will follow an upward trend, one of emotional and physical growth toward an adulthood of wide-open possibilities where they can explore the world and challenge themselves emotionally and physically.”

Everyone in the family shares the disease. Lives change. Emotions are on edge because these diseases are relentless. And we see the symbols of sickness every day. “My heart breaks when I see his foot brace lined up with our family shoes in the front hall. He wears it now to deal with the creeping effects of the condition. Just as with me, his symptoms began to show at age 10.”

I cannot imagine. I was twenty-five, an adult when MS blindsided me. How does a young kid process the life sentence that has been pronounced? That is so young to learn the tricks it takes to live a halfway normal life. “His symptoms — his falls, his need to hop at the end of the day because of muscle fatigue and cramping — will continue to worsen.”

Welcome to an unfair world, Liam. None of us asked for this.

 

 

 

 

 

19 Responses to Passed Down

  1. Christopher October 4, 2016 at 6:01 pm #

    I’m going to ramp up my work on my essay… perfekt or not, this needs to get out in front of those who can escort a change in the direction of eradicating unneeded suffering in this new millennium. It’s time.

    Thank you for posting this, Richard.

  2. Louisa October 4, 2016 at 8:14 pm #

    Break my heart. Fuel my fears. When I am awake at 3 am, this is the dread running through my head. Please, no.

  3. Sue in TX October 5, 2016 at 11:18 am #

    So timely. My highschooler just wrote an essay on MS for science class. She had to address certain aspects of the disease, including whether it is inheritable. I found myself editing her essay, not for grammar, but spin. As a young girl I told her that she would not get sick from me, that she would live to be an old lady with lots of grandchildren. It became a refrain. As genes were discovered, I added that her risk was increased a tiny bit, but she would live long and healthy. Everyone in our family would smile nod and move on to something else. The secret that my mother, her grandmother, had progressive MS and died, was rolled out in bits. My refrain at this point was that I have access to wonderful meds that keep me strong and my mom, their grandma, did not. Now, correcting , rewriting her statement that yes, MS is inheritable, that ones risk of getting MS is higher if one has a close relative, I had no rewrite. No refrain. Yes, I told her, this is true, but I believe for the first time that they will find a cure, and it will be in our lifetime. My refrain, a long close embrace.

    • Richard M. Cohen October 5, 2016 at 2:25 pm #

      We say what we must. I have three, early to late twenties. Thehy know the family history. We are open about it all. They demand honesty and get it. They are stronger for that.

      • Sue in TX October 6, 2016 at 10:15 am #

        Yes, the consolation prize. They are stronger, perhaps grasping mortality better than their peers, and (not to be discounted) a real compassion for others. The world can use such traits.

  4. Jan October 5, 2016 at 10:05 pm #

    Smart, I think — especially in hindsight and with past years of stress, misplaced shame, and well, pull up The Today Show interview with Matt Lauer and Jamie-Lynn Sigler for a glimpse of a better way than how I lived earlier. However, finances, a job cut, marginalization, and discrimination did enter into the past.

    As mentioned earlier, this year it is, “1) I have MS. 2) MS is considered to be a disability, and 3) So what?” (The latter refers not to the physicality).

    So, I’m “building a boat.” Thanks, Sue in TX for the idea to read Dale Carnegie’s “How to Stop Worrying and Start Living.” I have that old book somewhere here (thank you, local library). Only on Chptr. 7; it’s well written and has good, inspiring story anecdotes. Walking and pain are issues, but I am swimming literally and figuratively. Attitude is key.

  5. Therese October 6, 2016 at 3:10 am #

    I’m so happy to see new posts. I don’t have ms but I have lupus. This blog and your books have been extremely helpful to me.

  6. Elizabeth October 10, 2016 at 1:20 pm #

    Richard, I am so sorry that I haven’t been here to comment or read the posts for quite a while now, but I am not sorry for the reason why. I got strong enough and recovered from my last relapse enough to get a job and get off disability. I am also happy to say that I was fortunate enough to do it without a DMD, after failing with two different orals. I take LDN and Vitamin D. Along with many medications to manage my symptoms. Neurontin, Baclofen, and on and on. I don’t know how long this will last, but while I’m riding this wave I have little time to check in. I feel guilty after getting so much support from here. Keep on Keepin on, as long as you have the time. My brainpower gets sapped with my job so remembering anything outside of that is sometimes difficult, but I’ll be back. I love this blog! Keep up the hope.

  7. Dale October 13, 2016 at 12:48 am #

    Wow. That’s great to hear! I accept now the fact my kids might be predisposed to it. But I pray like everyone else they never get this horrid disease. I thought I could handle it, show everyone ‘meh, not dead yet’ and keep on like always smiling and finding a way to get through work and the daily castle siege. Now I just want to make it long enough to get the last into college next year. I don’t ever want to be in a position where someone else has to decide whether or not to pull the plug

  8. Beth October 14, 2016 at 5:59 pm #

    Dale- I worry about my two kids being diagnosed with MS too. Due to some weird symptoms, my daughter’s doctor did an LP to rule out MS. My son is 25, invincible, and “not worried about it”. I pray every day that my son escapes this disease!. The good news is that I did manage to get them both through college. Take care

  9. Christopher October 15, 2016 at 7:36 pm #

    The propensity to develop MS can be congenital, but it has very little to do with the actual pathogenesis of MS. Once science finds the trigger(s) then we’ll know much more about how it is passed hereditarily. There could be related factors that are present in the environment of parents and offspring that very well could be contributing to MS seeming to be passed congenitally, but there is as of yet no verifiable proof that MS is directly inherited. As long as your children are healthy, and practice healthy habits, there should be very little concern that they too will develop MS. It is also a good idea to have regular check-ups, and possibly genetic testing at some point for risk factors, mostly for peace of mind as well as staying ahead of the curve. Duke University and Harvard University are both already well on their way researching tests to predict risk genetically. Probably another 3 or 4 years more until a viable test is available to everyone.

    • Dale October 18, 2016 at 12:08 am #

      Thanks Christopher. I wish you would write that book…

  10. Louisa October 15, 2016 at 9:56 pm #

    Not sure I agree with going looking for the ms. I mean there is no real evidence that any of the meds change anyone’s ultimate fate.
    Although I feel I have been helped by tysabri, I think I would have preferred more years of not knowing, It is certainly a “before and after ” -and ALL relationships are changed the minute the diagnosis is made. That’s how I feel anyway. So no rush on the test unless there is something to be done about the results .

  11. Christopher October 16, 2016 at 7:07 am #

    Louisa,

    Actually there is a lot of evidence coming out now that the DMDs do impact MS, and most times make a very large impact on MS progression.

    I understand your concerns, and how getting a diagnosis of MS may have changed your point of view. But there are good reasons for getting tested even if the results of the test(s) is/are positive and if not much can be done. The main reason is that the accumulation of medical knowledge is additive, and every diverse bit of data adds evidence in one way or another to the total picture. It is totally your right to approach your situation in any way you see fit, but you are also helping many, many others even if you may not directly benefit from that knowledge. It is also not your responsibility to ruminate on all the possibilities how those tests may add to collective knowledge or not… it’s just something to consider that may not have been apparent. I know you understand I was talking about testing for the children of the concerned women above, just by reading what you posted. It actually is very important to get treated as early as possible to have the best chance of arresting the disease, and possibly reversing it. One of the biggest problems with diagnosing MS is categorizing the stage of disease activity. There is still a lot of work to be done in that area. It is becoming more evident through much current and past research that MS could be present and progressing for years in many people, way ahead of the point where actual persistent symptoms start to appear. And what is seen in people as PPMS, PRMS, or RRMS that shifts to SPMS rather quickly, may actually be MS that has been progressing slowly in the body for years undetected. So now when it is diagnosed, the disease process is already fairly advanced and somewhat past the time when many current drugs are effective. Which makes it seem like no drugs really do anything. There is actual proof now that catching MS early and treating it can stop MS progression completely in some people, and does prolong the amount of time, by more than a few years, until noticeable disability in many other people. Even though it may seem to be futile, the testing isn’t a useless endeavor.

    I thoroughly understand your dismay and frustration with MS. I experience much of the same feelings as the disease is so insidious and makes no sense in its randomness. In the past three years I’ve been in and out of hospitals and rehab facilities 7 times, and a total of almost 9 months in hospital beds. It sucks. It strips away vitality and makes hope very difficult to hold on to if not impossible. It’s like being in a raging sea with tidal waves constantly crashing into me, and barely able to take a breath before the next one hits… hard. It’s incredibly exhausting, and many times seems so pointless to go on. But I do because to give up before knowing the truth is like burning a book I’m really enjoying before I find out how it ends.

    I hope that all helps.

  12. Louisa October 17, 2016 at 12:08 pm #

    Thank you, Christopher – for your time and knowledge.

  13. Christopher October 17, 2016 at 2:50 pm #

    You’re welcome.

  14. Pat H October 18, 2016 at 6:29 am #

    Still here.

  15. Dale October 26, 2016 at 12:45 am #

    Yup, still here. Stopped the high dose Biotin with that huge Facebook group as it seemed to be causing too much spasticity in my legs. And then there’s the high dose vitamin D group. I asked my GP about vitamin D toxicity and he said it’s a very real thing with people trying to overcompensate for living in the north. I wish I could believe in SOMETHING even just a little that could possibly help our wiring repair itself.

  16. Dale November 3, 2016 at 1:50 am #

    The Cubbies won the world series in one of the most exciting baseball games I’ve ever seen. Maybe it was the adrenalin rush, but this is the best I’ve felt in a long time. And it isn’t the team I usually follow. But something about the camaraderie and spirit that comes together with an event like this is hard to define. Yes I know it’s just a game but it’s great to totally relax and get lost in something sometimes. I’d almost forgotten what it felt like.