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DiscussionStiff Person Syndrome: Want to connect with others
Brain & Nervous System | Last Active: Jul 4 8:09am | Replies (218)Comment receiving replies
My husband is 34 and positive for GAD65 antibodies. He’s been experiencing a tremor in his arm for about a year now. Also having spasms elsewhere in his body and changes in behavior. What’s most difficult for me is his behavior. Stopped working (understandable), but is very irritable and cannot even talk to me without saying he’s too stressed. Like extreme sensitivity. I cannot live my life with someone who can’t even speak with me. He also has ADHD and isn’t taking those meds as they seem to worsen his tremors and spasms.
My main question is, has anyone else with a spouse with SPS experienced this type of extreme personality change? It is heartbreaking. I want to support home but I cannot agree to be verbally abused for the rest of my life while I keep everything in our household running by myself.
Replies to "My husband is 34 and positive for GAD65 antibodies. He’s been experiencing a tremor in his..."
Prior to and during initial diagnosis, my anxiety was unbelievably bad. The pain from the spasms was unbearable and draining. I had a serious startle response that made me jumpy and scared. I had to leave my job, couldn’t take care of myself, couldn’t drive and dealt with constant pain. It absolutely changed my personality. I was struggling with grief over my old life and the inability to control my body. It wasn’t until I was on multiple oral meds and IVIg that these symptoms were under better control. I know being a caretaker of someone with SPS is a challenge. I can only imagine the mixed emotions you are also feeling. Empathy and patience are key. I do know some patients with SPS that are able to take ADHD meds that do not exacerbate SPS. I cannot speak to which meds they take. Some ideas…individual therapy, couples therapy, EMDR therapy, sauna and massage dates. Low stress activities that allow the brain to be distracted can help SPS. I hope this helps!
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@cortneykaybenson Gee, stiff person syndrome is a tough one. Is your husband on any medications? Antidepressants? Imagine what must go through his mind!
I decided to include this information about SPS because it mentions treatment options and
https://my.clevelandclinic.org/health/diseases/6076-stiff-person-syndrome
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Do you think that you could have a good discussion with your husband’s doctor?.