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Opening Up with the Extraordinary Eight

My mother and father parented five daughters and three of the five blessed them with 8 beautiful, intelligent, gifted unique grandchildren. We consider and have coined them our extraordinary eight. When I was diagnosed with Multiple Sclerosis, their ages spanned from 14 to 3. The older ones remember Aunt Dianne before the challenges, assistive mobility devices, falls, exacerbations and such. The younger, not so much or at all. They all accept my life as the norm with little commentary about it, so I thought it’d be interesting to hear what they may think or wonder. Hence, I opened the floor to a Q&A and had a little interview session with our extraordinary eight..

Is it fatal?

My son, Justin, is the first of the extraordinary eight. He sees my daily challenges and remembers best when I lived without MS as he was 14 years old when I was diagnosed. I remember at that time he simply asked “Is it fatal?” and upon finding out that it isn’t, he replied “Then we can deal with it”. Now, he’s 25 years old and he wonders how MS has most affected my life.         

MS has primarily caused me to have a life of dependency. But, it has also taught me to live without taking anything for granted and appreciating life.

My first nephew

I was introduced into the wonderful world of ‘Auntie-dom’ with my Nephew Wilson, who just turned 21 this year, but was 11 when I was diagnosed.
   
Wilson was born with Down Syndrome and his primary question to me is “Ap-bul?”  He wants to know if I have my seemingly endless supply of apple sauce in my refrigerator for him to partake  – and I do! Just for him, my Wookie!

What mental and emotional problems do I face?

My very first niece Paige, age 8 then and now a 20 year college student majoring in Early Education wants to know what are some problems I face, not just physically and emotionally, but mentally as well. She also asks if I ever wish I didn’t have MS.

I know that physically, many of my struggles are apparent – walking, getting up, getting in and out of the car, etc. Emotionally, I deal with feelings of frustration and even sadness sometimes when I’m unable to do the things that I want to do, go to the places I wish to go and the unpredictability of MS. Mentally, I try to avoid the negativity MS causes and stay focused on the positives in my life. It truly makes a difference. And although I try to make the best of my situation, I would MUCH rather live a life without MS.

How have I remained positive?

My nephew Dorian, who also happens to be my God-son, was 8 when I was diagnosed and is now 19 years old and about to enter his second year as a Marine and Environmental Sciences major. He wants to know how I’ve remained so upbeat and uptempo after I was diagnosed? He inquired what is my secret? 
                                   
I had/have so much to live for… my children and family, friends, things I love – new and old – to do. I focus on every positive thing and it makes it so much easier to maintain my exuberance. My secret? Adhering to the Serenity Prayer… Specifically, praying to ‘accept the things I cannot change, having the courage to change the things I can, and the wisdom to know the difference. I live one day at a time, enjoying one moment at a time, accepting hardships as the pathway to peace’. And “…Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; So that I may be reasonably happy in this life and supremely happy with Him forever and ever in the next.”

Is MS genetic?

At 9 years old at the time of my diagnosis, my now newly graduated, college bound 18 year old nephew Dion is interested in knowing if MS is genetic.             
 
As far as I  know, I am the only one in the family – paternal and maternal – who has MS though there have been other autoimmune diseases diagnosed within our family. I wonder sometimes if there is a relation in any way. The National MS Society says that though MS is not an inherited disease, there is a genetic risk that may be inherited. In the general population, the risk of developing MS is about 1 in 750 – 1000. The risk of developing MS is increased when a first degree relative (parents, siblings and children) have MS.

How did I feel when diagnosed?

My second niece who is also my God-daughter is 16 now, but was 5 when I was diagnosed. Her name is Rachel and she asked how I felt when I first found out I was diagnosed with MS?  

Surprisingly, I initially felt relief. I knew things weren’t ‘right’, but worried I’d have to undergo a barrage of tests and doctor visits to no avail. This had been my experience 6 years prior when I’d fallen ill and though I learned years later that it was the onset of the MS, I was erroneously diagnosed back then with Benign Positional Vertigo, but I never believed it. To finally have a medical professional ‘get it’ and accurately diagnose was enlightening and, again, a relief.

How old was I at diagnosis?

My youngest nephew, Wesley, was about to turn four when I was diagnosed and he’s 14 now. He wanted to know how old I was I when I was diagnosed.     

I received my diagnosis on July 13, 2007 and I was 37 years old.

Advice for the newly diagnosed

The baby of the eight is my daughter, Jessica. Like her cousin Wesley, she was only about to turn 4 upon my diagnosis and she, too, is now 14. Jessica witnesses my daily struggle first hand, asks what advice I’d give to someone who was just diagnosed with MS.

I’d tell the newly diagnosed that the road they’re going to trod will undoubtedly be difficult, but it helps mentally to be prayerful, optimistic and positive. Finding ‘tools’ to help avoid feelings of depression, hopelessness, and despair is important. Additionally, identify and utilize available resources and support systems such as your family and friends, your local MS Society, or the MS Foundation. Listen and comply to and with your MS specialist(s)’s orders and advice. Don’t succumb to the challenges you’ll likely face, but rather keep going until you just can’t anymore. However, listen to your body so you’re careful not to put more on it than it can bear… And lastly, you are not alone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • CRop4
    1 year ago

    Dory, your post sparked a memory that I had as well with the same feeling of “something doesn’t feel right.” Here’s what I’ve learned since my diagnosis in Aug 2015.
    Get a second opinion from another Family Physician (general practitioner) so you can get a referral to see a Neurologist. Not all Neuro’s practice the same specialties (some in Epilepsy, some for ALS, some for Graves, etc) but I recommend seeing a new General practioner who can get you a referral to see a General Neurologist. If your GP has a more precise diagnosis to send you to see a particular specialists, that’s even better!
    Now the next phase is waiting for your appointment. More than likely a long time, mine was 7 weeks since I was “a new patient.”
    Next possible hurdle. What should you do if you feel your symptoms are escalating and your appointment is a few weeks away? I hope you feel comfortable enough with your new GP, who should let you know how to get in touch with them through a patient portal. If you call the office, it may take 24 hours to return your call, patient portal access is what I recommend. Best way to call out for help. Your doctor may prescribe medication to calm down symptoms, but realize this is not a cure or complete halt.
    Next, when you visit your new doctor, for whatever condition your in, hopefully this doctor will give you a complete verbal and physical evaluation. They should also print a copy of your visit evaluation; all their recommendations for medicine, diet, testing, blood work, etc. Please make sure you take a note book with you for your list of questions (if you have MS your cognition and memory take an awful hit) because reading them is a lot easier than trying to remember many questions. Lastly, you need to ask them, if YOUR SYMPTOMS ESCALATE while waiting for your next appointment, HOW do you CONTACT this DOCTOR QUICKLY? If you have to go to an ER, that’s an expense that may be better suited for medication. The doctor should also have a patient portal and an assistant or Nurse Practioner you should meet before you walk out of the office. This will help provide oversight for your condition.
    I recommend keeping all your Medical paperwork in binder, it will multiple quickly and you’ll be able to find everything much faster.
    Good luck and just remember, the MS community is large and there are lots of resources for help. Medication is available to help slow the progression.
    Best wishes to you.
    Cindy

  • Dianne Scott moderator author
    1 year ago

    @ttvd0u
    Hi Cindy,

    You’ve provided sound, thorough and great advice.. Thank you!

    Best,
    Dianne ♡

  • Dorry
    1 year ago

    I am at the stage when I know something is so wrong. I have most of the symptoms of MS but hard to get an accurate diagnosis. My main problem being weakness in the legs and unable to walk well. I use 2 canes and my GP still doesn’t get it. I have bad Vertigo and she associates this with High Blood Pressure, and looking in the area of a Vitamin B deficiency. So I agree with you that it must be a relief to know the name of your disease so you won’t be living under the umbrella of wondering. You can just get on with your life and receive the right medication. Living at the crossroads is a hard place to be where I am right now. But having a FAITH and belief in a higher power allows me to be positive and just live one day at a time since this all anyone can do. I was inspired reading your story and it does help to have this kind of support and positivity here that enables one to carry on with life as best as they can Best wishes

  • Dianne Scott moderator author
    1 year ago

    Hi @dorry ,

    I’m sorry to hear of your struggles and pray for an accurate diagnosis for you sooner than later. Cindy has commented here with very good advice that should be beneficial for you and I hope it helps. Keep your faith.. It is indeed paramount.
    I am pleased you enjoyed my article and even more so that you commented and shared your story.
    Good luck with everything..
    Best wishes,
    Dianne ♡

  • Debbie S.
    1 year ago

    I was diagnosed with primary progressive MS on July 9, 2007. It sounds like we’ve had a lot of the same timeline. I had a nephew who was 12 when I was diagnosed and we were watching his mom play softball one night and he was such a little man, sat down next to me on the bleachers and asked so what exactly is going on and why do you need that cane? His next question was are you going to die from it and when I said no he hugged me and said then you’re okay. I loved it that he just came out and asked instead of being awkward. Another nephew was about four and his mom told me he picked up a stick in the yard and used it like a cane and said nos I walk like Aunt Debbie. It broke my heart to realize that he would never remember me when I was “normal.” They have all accepted the new normal probably better than I have though.

  • Dianne Scott moderator author
    1 year ago

    Hi @DebbieS …

    You’re right..the familiarity in our stories is uncanny! Thanks so much for sharing your story.. Hang in there and keep fighting. I am so happy that you have supportive family – at all ages! 🙂

    (Btw..Your nephews sound too adorable and one fun fact, I have a sister that’s ‘Debbie S'(cott) also!)

    Best wishes,
    Dianne Scott

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