This post is one that has been rolling around in my head for a long time. Hopefully I can blurt it all out with some sort of finesse and structure. Again, 0% photography related so it’s perfect for my website right? When I was 7 years old, my mom was diagnosed with Relapsing-Remitting Multiple Sclerosis (MS). I was pretty young, so thinking back I don’t really have too many memories about her diagnosis. I do remember my dad bringing me to the University of Alberta hospital. The brick by the elevators is burned into my memory. I didn’t really have a full understanding of what MS was or how it would affect our family, I mean my mom didn’t LOOK sick right? I’m sure a conversation was had that my mom might be a little tired and need to rest more sometimes, maybe I would need to help out with chores more etc. It didn’t seem like a huge deal at the time.

The coming months and years would bring a few surprises and interesting experiences. Not all of them bad, and a lot of them I think helped turn me into the person I am today. When you have a sick parent you are kind of forced to grow up pretty fast. I will admit, there are times when I have felt very angry. It’s even more confusing when you don’t really have anywhere to direct that anger. It can also feel very isolating as a young adult when you have a sick parent and not a lot of your peers are going through what you are, even moreso as an only child. However most of the time, I am not angry. If anything it’s taught me to be more grateful, compassionate towards others, and appreciate things life in a way I’m not sure everyone does. This year I have begun volunteering my time in a new role on the Board of Directors with Caregivers Alberta. Which is an organization I wish I knew existed back in some of those harder times and I look forward to seeing what we can accomplish together! If you are ever struggling in a similar situation, feel free to reach out to me. Sometimes it helps to just chat with someone who’s been there.

Ok, this might be unexpected but there are some PERKS to growing up with a parent who has MS:

● Front of the line at Disney. Pretty much every kids dream.
● If you area kid sitting in your moms wheelchair at the airport while she is in the bathroom, the police might feel bad and let you pat the drug sniffing dog (or maybe they thought I was holding?).
● Taking your moms mobility scooter to the corner store with your BFF to buy slushies and candy.
● Wearing heelys + mobility scooter = very fast transport. Those things can MOVE.
● Being an unruly teen and being able to hear her slowly making her way down the stairs when you are doing weird stuff in the basement.

It’s not all slushies and cute dogs though, obviously. Some of the harder and scarier memories I have are:

● My mom not being able ride horses with me anymore.
● A nurse coming to our house and showing me how to help inject needles into my mom.
● Traveling with my mom to Poland for an experimental treatment not offered in Canada (honestly though this is a pretty cool memory).
● My mom being hospitalized countless times for various complications from MS. Even as someone who works in healthcare myself, the system is often confusing, inefficient, and convoluted. We are kind-of hospital veterans now though and know how to make the system work for us as much as possible.
● Getting a call in the middle of the night from the hospital telling me “It’s urgent and I better get there NOW because it doesn’t look good”. (I was also about 7 months pregnant at the time).
● Seeing my mom barely responsive on a BiPAP machine when she suffered a severe pulmonary embolism.
● Yes, I’ve helped my mom get on a toilet.
● Helping my mom move into an assisted living facility. Which is an ordeal in itself to navigate. She was living alone and receiving homecare for quite some time (probably for far too long as I would worry about her everyday).

My mom has always had an amazing attitude towards her illness and just generally life itself. I credit her a lot for the way I am as an adult (am I an adult now?). She’s been on several boards, was an amazing public speaker for many years, and is now living it up as a proud grandma. She’s also pretty ‘with it’ and has an amazingly candid Twitter, plus a blog that details some of her experiences living as a non-senior in an assisted living facility. I decided to ask my mom a few questions about living with MS, and here is what she had to say!


 

What was it like when you were diagnosed?

I started to experience numbness in my left and foot which would last a few weeks but did not cause any impairment. It started to become more frequent and when I mentioned it to the doctor I do remember them asking about any family history of MS. The only family history of it was a great uncle in Sweden who threw himself out the hospital window when diagnosed. I didn’t follow up too much but had an MRI looking for spine problems like tumors. Spring of 1995 I started looking into MS on the computer and found I had lots of the symptoms. I sat on that information for a while as there was no real cure or treatment. June of 1995 I was 39 years old and the numbness came back along with extreme fatigue I noticed while walking. I was also having to stop every few yards and staggering like a drunk person. My doctor was away so I went to see her backup who told me it would be a few months to see a neurologist so instead wrote a letter and sent me to the U of A emergency. I was diagnosed by Dr Warren, a Neurologist who had very bad bedside manner. My reaction to the diagnosis was “I can’t have that I don’t know anything about it”. Denial is a good place to start. Diagnosis day was a surreal feeling of listening to this doctor deliver this life changing news to me and with the same breath talk about some graveyard tour he went on with the intern. The nurse from the ER wouldn’t let the hospital porter take me to my floor instead taking me herself. She took me off to a corner beside the elevator got down to my wheelchair level, looked me in the eyes and told me it’s OK to be scared. For the first time I realized angels are around me; More angels to come. They admitted me that day to start pumping Solu-Medrol into me and do a spinal tap and MRI. I felt better very quickly and stayed in denial for quite a while thinking it would not affect me. My mother got my diagnosis mixed up with a different disease and thought I would immediately go to a wheelchair and die within a year.

How did you tell me about it?

I didn’t really tell you about the MS because you were too young to understand. The week I was in the hospital, a family friend took care of you after school.  I would just tell you my leg didn’t work too well and sometimes you would be my cane. Once I started using canes and scooters you just played with and enjoyed them.

What sort of treatments did you experience over the years?

Post diagnosis I was given a week of Solu-Medrol which put me almost back to normal but I was still fatigued a lot and couldn’t run even a few steps. Dr. Warren said see you in a year. That surprised me and I asked to be sent to Dr. Witt (much nicer). He put me on a medication they give kidney transplant patients. I felt like it helped. There were no actual MS medications at that time. You weren’t supposed to exercise; however, horseback riding and swimming were recommended. I don’t feel their idea of horseback riding and my idea were the same. All of the sudden, my horse who had never stood still for mounting stood still for me. Did she know? I think so. Over the years whenever I felt I was having an attack (for me just extra fatigue) I was put on Prednisone 75 mg for a week and then weaned off. Most people would not tolerate this well but I thrived on it. It gave me so much extra energy but over the years the side effects showed. Chipmunk cheeks, diabetes, skin thinning etc. Copaxone came out at some point. It was supposed to lessen the attacks with a shot taken every day. I don’t feel as though I was ever a relapsing/remitting type of MS but instead more of a secondary progressive. (MS Types found here). Nearly all drugs are geared toward relapsing/remitting so I am pretty sure that is why I was assigned that diagnosis. I gave that drug up after a year or two but made good Airmiles during that time. Then I tried Tysabri but it was a little dangerous and I received no benefit. I went to Poland for the CCSVI (liberation) treatment. Exciting but ultimately disappointing. I think the best thing you can do for yourself is stay calm, stay in the moment and appreciate your life you have today. Stay present and cautiously optimistic.

What have been the most frustrating parts of having MS for you?

By far bladder issues were the worst thing to deal with. With only a couple tablespoons of urine in my bladder I needed to empty it. And sometimes it wouldn’t. Other things like canes are accepted but when you pee your pants it’s just embarrassing. It was also one of the things I noticed pre diagnosis. I took drugs but they didn’t help too much, depends are not as dependable as one might think. Then you have a catheter put in and wear a depends and somehow it still manages to leak out. You say “God what more can I do?”. Other than the urine thing and an occasional tumble I did not experience a lot of embarrassment. Frustration was losing my ability to ride my horse. That was hard.

How have you managed to keep such a positive attitude?

A lot of things contribute to my attitude, mostly just always having been an optimistic person and never expecting or demanding perfection from myself. I also feel like I was open to what I call epiphanies which were pretty random like:

Walking in the forest I saw a tree that had fallen but was being held up in the crook of another tree. I felt like it was supported and you probably don’t remember but we would often walk the dogs to the ‘Jesus Tree’. I noticed that the forest was made up of all kinds of things like new beautiful growth and flowers, but also mature ragged looking things and dead things. All together it was more beautiful than a perfect park like setting so I just thought of myself as a ragged thing that was a beautiful part of the big picture. I loved walking the dogs in the forest. I felt like my MS would get worse for sure so if I wasted today feeling bad about what may come next I would have wasted that “good” day.

Are there any other thoughts/stories you’d like to share?

There was a girl I met at an MS meeting. She was relatively young, her husband had left her, she had moved in with her mother who cared for her, she was in a wheelchair, and had a catheter that was tangled so we had to find somewhere to unkink her. I really enjoyed meeting her but later thought “she is everything that I am afraid of and yet I still enjoyed meeting her”. Maybe I could be someone people can enjoy whether or not I have MS (I feel like I am).

I find I meet the nicest people who are happy to help me. If you think about how you feel when you help someone else, I am really just a rolling gift spreading that good deed feeling to people. I always say thank you and smile at them.

I have always been good at any job I’ve had so I feel like it is my job to be a good crippled person and be nice to the people who care for me and about me.

Last but not least I don’t really see that there is a choice. Tomorrow will come and you can be happy about it or stay stuck and miserable.


 

If you made it all the way to the bottom here, congratulations! I hope this post shed a little light of some of the experiences of growing up with a parent who has a chronic disease, as well as some of the thoughts from someone who lives with that disease everyday. I’m looking forward to spending these next few years watching my mom experience her role as a grandma! Thank you mom for everything you have taught me. I love you.