As part of our members’ stories series, Samantha Tierney is delighted to share her story about her life being a mother and grandmother with CMT.
Name: Samantha Tierney
Type of condition and age of diagnosis:I was diagnosed with CMT at age 15
How many children? I have 3 children, aged 32, 26 & 23, and 2 grandchildren, aged 10 & 8
Were you diagnosed before you had children? Yes, I was
Any challenges I faced in caring for my family, and how I overcame them? I was very lucky, I had fairly easy pregnancies and births with my 3 children. Despite what doctors had told me, they advised that I not get pregnant as the extra weight to carry wouldn't be good for my CMT. I can confidently say none of my pregnancies affected my condition. There were some small challenges when my kids were small, like lifting them or carrying them could be quite difficult at times, and when they were toddlers running around, it could be tricky to keep up with them, but totally doable. You learn to adapt and keep within comfortable, safe surroundings. Also, kids adapt very well and learn from a young age that Mammy can't run, so don't go too far. I also have 2 grandchildren, and they both know my limitations, too. I collect my 10-year-old granddaughter from school every day, and she knows I can't stand in the line to wait for her, so she comes out to the car to me, and she also helps with shopping, etc. I'm very unsteady on my feet, so she gets the trolley for me and helps fill it with groceries, which is a great help.
I live on my own most of the time now, and my kids are all grown up.
Things are getting more difficult the older I get, so I walk with a crutch now for support and balance. My legs and hands are weaker, and I also have back issues, as a result, I'm unable to hoover, wash floors, and change beds, etc it takes its toll on my back and legs so I have home help a couple of times a week to help with that sort of thing. I still manage to cook, I just take my time and sit when I can while preparing dinners. I also sit when sorting out washing out of the machine, etc...
Biggest parenting and grandparenting achievement?. I had 3 wonderful kids, despite what doctors told me I wouldn't be able to do, I did it!! And they've grown to be very kind caring adults. I helped raise my Grandson while my son and his girlfriend finished school and college, then they moved out and got their own place.
I also look after my granddaughter while my daughter and son-in-law work hard, and I love doing it. Makes me feel very lucky that I'm still able to do it. Life can be tough at times, but I just get on with it, I adapt very well and continue to do the best for my kids and grandchildren whenever I can. They make me so proud every day!!!
What advice you would give to a person with a neuromuscular condition with a young family? Always plan ahead, prepare, and accept help when offered. Adapt when you can in the home, get your blue badge for parking and accessibility access to shows and concerts wherever you can. It's been a game changer for me and makes going to events easier. Also, don't focus on what you can't do; find a way to do it if you can. Also, remember every person with a neuromuscular condition is different, and it affects every person differently, so know your own limitations.
When mine were young, bouncer seats and playpens were great if you wanted to shower or even when cooking, so they wouldn't get under your feet.
Anything else you’d like to say? I was diagnosed at age 15 after an invasive biopsy. Was given a worst-case scenario. I was advised against getting pregnant because I wouldn't be able to carry a baby and would find the birth difficult. In my experience, this was not the case. I had 3 great pregnancies and easy enough births on my 3 beautiful babies.
I was also told in my early 20s that I would be in a wheelchair, unable to walk unaided due to the deterioration of my muscles before the age of 30. Which, again in my experience, was not the case.
I'm 53 now, and while life has been difficult to navigate my way around, I worked outside of the home until 10/11 years ago, things got too difficult for me with hand spasms, lower back pain, and weakness in my lower limbs. So now I spend my time between looking after my grandchildren and socialising with my partner and friends.
I won't lie, life can be a real struggle at times, and it does get me down sometimes, but I've learned to just get on with life, and I adapt as best I can.
I drive an automatic car and have a blue badge, so I park as close as I can to shops, etc. I do need a crutch to walk as I have gotten weaker as the years have gone by and need the crutch for support. It did take me a while to admit to myself that I needed some type of aid/crutch. I came to a crossroads in life where it was either not to go out and socialise anymore or use a walking aid. The walking aid won!!
I go to concerts, the cinema, and nights out in the pub. I get accessible tickets now with Ticketmaster when I go to a concert, and it makes life so much easier. Sometimes I will ring ahead to a venue if going to a show in a pub or theatre, just to check how accessible they are. It gives me peace of mind before I go.
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