For those of us caring for loved ones with Multiple Sclerosis. Group started by a Caring.com member in April 2012. Information Caring.com offers for MS caregiving: Multiple Sclerosis Resource Center
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Dancer girl said...
2 months ago
My husband was diagnosed with primary progressive ms and concurrently developed cycle vomiting syndrome about 6 years ago. He was connected to health care (neurologists for ms). He is angry and has since alienated his doctors. He was compliant in trying drugs that they thought would help his symptoms for about 4-5 years but they all had many side effects which in turn exacerbated his cvs. He got angrier and more depressed. At one point we were going to the ER so often that he began to be treated as a drug seeker which only served to increase his anger until finally his neurologist, who had been prescribing him Percocet (a very small amount for his pain his use of which never escalated) said he would no longer prescribe it since one ER doc, treating him for cvs wrote that he was drug seeking. This was a huge betrayal to my husband, who liked and trusted this neurologist. He no longer sees anyone for his ms, which I find frightening. I dont feel as if I know this man that was my best friend and love of my life. The man I married was funny kind and easy going. We had 24 wonderful years together. Now he can't seem to even be civil to me. I understand he is in pain, depressed, angry at a medical system that has failed him (though I believe his own anger and bad behavior with staff has in part caused this). When I try to raise my concerns and feelings he generally walks away after telling me that I don't understand and that he doesn't understand what I am feeling or why. I tried therapy about 2 years ago after having a breakdown both emotional and physical, which helped a bit and I was able to disengage from his anger. But it's not easy for me to take being treated so shabbily by my best friend. I feel as if I cannot talk to him and feel a failure in not being able to reach him and communicate with him. Fortunately I have a job I like and do well at. I also have many friends, but often do not feel like talking to them because of my bleak and negative disposition. I have begun to meditate which is very helpful. But I'm wondering how to get my husband back. He refuses to seek mental health treatment (he was actually angry when I sought help for myself, saying that I would just bad-mouth him to someone. This is my first time reaching out online. Any advice?
2 months ago
I was a caregiver to my mom who had ms from 1998 until 2014, when she passed. It all fell to me, eventhough there were better, closer ootions(older relatives who simply didnt want to help).. Im 40 now, and i dont have a great job and i barely speak to my family. If you find yourself in a similar situation, run. Yeah, you will have a little guilt along the way. But at least you will have a chance at a family of your own and the chance for a good career. If i had left i may have accomplished something with my life. Instead im just aging and bitter.
Grace Ann said...
3 months ago
i love all three of my children. But my daughter has MS, and I feel that my sons don't understand what its like for her. My one son says, that yes, Beth has problems, MS, bringing up two toddlers, but then he equates it to his having 4 kids (all 5 and under). I feel that its very different. He has four children that he delights in, even as it makes his and his wife's life difficult. My daughter has two children and MS. She is in pain much of the time, she needs to manage many medicines, sh needs much more sleep than others, she gets tired in a way that makes it impossible for her to do anything. I am feeling very unhappy with my son who does not understand, even while knowing that I don't understand a lot either.
Luna Lovegood said...
3 months ago
I'm super angry with my best friend who has MS. She refuses to take the appropriate medication for her seizures because the MS prevents her from making good decisions. She rages because she refuses any depression meds and is out of control with her perspective. She doesn't have the ability to make a rational decision and I'm fed up with her irrational stubbornness. I'm at the end of my rope and have almost zero compassion left for her. She is sicker than necessary because of all her bad health decisions. I'm at a complete loss.
3 months ago
MS is such a hard disease to care for! It is on and off! One day my husband is happy and active and the next day he is sad, tired and afraid for his future. It's almost like being married to someone who is bi-polar! Most days I roll with the punches pretty good, but somedays it gets really difficult. Is this how the rest of my life will be??? My husband was diagnosed in 2005 with RRMS. I guess that got that relapsing-remitting part down right!
4 months ago
I have been with my husband for over thirty years and he has had multiple sclerosis for 18 of them years. It has been a very difficult road. The worse part of my husband MS is the mental changes that have happen. He has impulse control issue that have cause many problems in our marriage. Just last week he professed is undying love to another women and thought that he could support both of us. We don't even make that kind of money. This relation was a scam and he took out a loan and sent her over 2000.00 that we do not have. Every day is difficult and I am trying to protect both of us.. However, most of the time he looks at me as his enemy and has delusions and think that everyone is out to get him. I am at a lost and at the end of my rope. I pray that God will give me answer as to how to handle this situation. I love my husband and he does not want me to leave. But he looks at me as his mom to some extent I do not know if I can deal with this. I don't have the answer.
4 months ago
I am new to participating in the world of on-line support groups. My boyfriend of 2 years has been diagnosed with ppms about 7 yrs ago. I care very much for him, and every relationship has its issues, but with a disease like this, wow! Things can get very intense quickly. I would really like to be a part of a support community.
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