Ask Leigh: It Helps to Learn from Others
Posted by Leigh Kost
Dear Leigh: My husband is a stroke survivor. He had a stroke at age 52 on Oct. 30, 2015. He has right side paralysis and expressive aphasia. It is very hard to see your soul mate this way. I have been trying to fix him, but just realized I can’t. I’ve had to stop working to care for him. He has progressed fairly well, according to the therapist, and is trying to gain back his independence. I don’t know what to expect. I haven’t been able to find any support groups in my area. – Tammy
Leigh Kost: I do believe exposure to successful stroke survivors and their caregivers would help you immensely. To find a support group you might try looking on the support group registry on Stroke.org, or contacting the stroke coordinator at your local hospital. As an alternative, I personally have found support on social media groups such as Facebook, but I can’t endorse any specific internet group. These groups are unregulated, not run by professionals, and are subject to the various personalities involved, but it might be worth looking into.
There are also groups for caregivers. Interaction with other survivors helped me tremendously. I have spent countless hours online having conversations with other survivors. Be careful; not everyone online can be trusted. Additionally, whenever you encounter anyone in the stroke community, ask as many questions as you can. I have found it’s best to learn from other’s experiences. Unfortunately, there does not seem to be a guidebook regarding how to address the myriad of issues faced by stroke survivors and caregivers.
Some general advice; your husband is still the man you married. He is having the fight of his life and needs you to be the spouse that you promised him that you would be when times got bad. There is nothing in the world that can prepare you for what you are experiencing. While every stroke is different, I am here to testify that many stroke survivors go on to have a very good quality of life. My stroke would have been classified as severe, but I enjoy my life. My life is different, but its’s still good. A term heard often in the stroke community is that stroke recovery is a marathon, not a sprint.
Leigh Kost is a stroke survivor who wants to help people within the stroke community cope with the emotional and lifestyle changes that can occur following a stroke. She gives advice based on her own personal experience. She is not a healthcare professional and cannot give medical advice. You can submit questions for Leigh at AskASurvivor@strokesmart.org.
The material provided in this column is designed for entertainment purposes only. The views expressed reflect those of the author and do not reflect the opinion of National Stroke Association. You should not rely on any information on this page to replace consultations with qualified health care professionals to meet your individual medical needs.