Second in a series. Read part one.
This week, I sought advice from my aunt, Heidi McLaughlin, because she is a thoughtful, wise person. Like me, she is a writer.
RB: If I didn’t have SMA and you could only give me one piece of advice about life, what would you tell me?
HM: Spend time investing in friendships and family relationships. Find two or three people outside your family who you can really trust, who you can go to when you need to talk. Be the kind of person that they can trust to come to when they need to talk.
Find a mentor. Find someone ahead of you in life who you can trust to give wise advice and help you make decisions. Spend time having good and deep conversations.
As far as it is up to you, endeavor to live in peace with the people around you. And know that sometimes you can do everything right and there will be some people in your life who are just determined to live in drama and friction. It’s OK to protect yourself from people like that.
Overall, be open to always meeting and knowing more people. They may not become one of the two or three special friends, but your life will be made richer by knowing all kinds of people.
Would you tell something different if you took SMA into consideration?
I wouldn’t say something much different, but I might add this: A disease is a heavy burden to bear. It is a heavy burden on the individual, the family, and support people around the individual. It can put a lot of stress on relationships. I believe it would be wise to seek out professional counseling to help work through the loss, grief, and difficulties. [It would help] to have a safe place to unload feelings that might hurt people close to you, were you to share with them or unload in a stressful moment unintendedly.
What counsel would you give a family with a new SMA diagnosis?
Seek out other families who are ahead of you in the process both for advice and because they know what you are going through, and what you will go through, better than anyone else can. It can be a big deal to just have someone who knows how you are feeling. Be a part of support groups.
What would you say is the most important thing someone with SMA can do to improve their physical health?
I don’t think it’s really that different from what any person with or without disease can do, but perhaps it’s more important for someone with disease to eat a good diet. There is a lot of research coming out about inflammation and its effect on the body. Eliminating inflammatory foods such as sugar and processed or packaged food from the diet is being shown to have a major impact on the immune system and on overall health.
If you could only give me one piece of advice for good mental health, ignoring SMA, what would you tell me?
Keep a gratitude journal. Nothing changes your perspective more than focusing on the positive things, even if all you can say on some days is very basic like, “Thank you for air to breathe.” If you consistently look for things to be thankful for it really can change your mindset.
Would you tell me something different if you took SMA into consideration?
No, but again, I’ll add that I believe a good professional counselor can make all the difference in mental health, as dealing with SMA brings up some unique challenges. You may have to try more than one to find a counselor who really helps you, but if you find a good one, it can make a big difference. Again, having someone outside of the people in your everyday life to talk things out with, who won’t be offended by your feelings, and who validates them can be so valuable.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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