Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (8)

Jul 20, 2018 · MVD surgery for Hemifacial Spasms in Brain & Nervous System

Last May, I wrote about my husband's 2009 MVD surgery. Unfortunately, the hemifacial spasm resumed late last year. The TN didn't, thank God. After researching, I was sorry to see that others have had the return spasms return at about the 10 year mark, post MVD He has gotten some relief from Botox injections by a very capable neurologist who specializes in Movement Disorders. She also prescribed Trileptal twice daily, and he's using an oral tincture of medical marijuana, (which is legal in our state), as well as a vape form. My heart goes out to anyone who is suffering from the debilitating condition.

May 24, 2017 · Alzheimer's and DNR in Caregivers: Dementia

Hello Macbeth, I’m sorry that you’re going through this, too. Honestly, if my husband’s arrest hadn’t happened so fast and I had more time to think, I may not have agreed to the pacemaker. From what I understand, the pacer doesn’t last forever, so I wouldn’t replace it. Is your husband still taking any cardiac meds for high cholesterol, blood pressure, etc.? I’ve thought of discontinuing his cholesterol med and he doesn’t take BP meds. In general, I feel that any further testing other than labs or xrays for an injury would be unnecessary. He is due for a colonoscopy next year, and the prep would be inhumane. This horrible disease! Hugs to you ((()))

May 24, 2017 · Alzheimer's and DNR in Caregivers: Dementia

Thank you, Teresa. I forgot to mention that my husband’s sister is a geriatric/hospice social worker. She is in favor of a DNR. I am, too, just sad to have to make that decision for my husband.

May 24, 2017 · Alzheimer's and DNR in Caregivers: Dementia

Thank you, Scott. I’ve never thought of a DNR for myself, but we both have all of the other paperwork in place.

May 24, 2017 · Alzheimer's and DNR in Caregivers: Dementia

Yes and I am planning to talk to our primary when I go in a few weeks.

May 11, 2017 · Meet fellow Caregivers - Introduce yourself in Caregivers

My husband is 65 and has had Alzheimer’s for 5-6 years. Is there a group for younger couples?

May 11, 2017 · MVD surgery for Hemifacial Spasms in Brain & Nervous System

My spouse had that surgery in 2009. I know that you have been going through a living hell that never seems to end! I hope that you’re starting to feel better.
Following my husband’s surgery, I remember that he was very weak and had a headache that lasted for days. He had scar pain that lasted for years, but that’s an unusual side effect, and a different neurosurgeon was eventually able to prescribe an ointment that took care of it permanently. Was the surgery worth it? I would say “Yes.” His hemi-facial spasm was extremely severe and painful. His face would pull up to a severe angle. He had Trigeminal Neuralgia and facial tics. He had lost his sense of taste and had numbness in his nose, mouth and throat. He had to close his business and retire due to his condition, and go on disability. The MVD totally cured the TN and facial tics. He sometimes has spasms, but not to the degree before surgery. He regained feeling in his nose and throat, and sense of taste. Sometimes his mouth still numbs and at those times, he may bite the inside of his mouth enough to cause bleeding. He did regain a good quality of life and I hope that you will, too.

May 11, 2017 · Alzheimer's and DNR in Caregivers: Dementia

My husband is 65 with Alz symptoms for past 5-6 years. He had a heart attack in 2013 and last year, cardiac arrest with a pacemaker inserted. His short term memory, executive functioning and vocabulary have decreased a lot in the past year. However, he still is pleasant, can shower, dress himself and groom with reminders of the next step. He can’t work anything mechanical. With his history of cardiac problems, I’m thinking about getting a DNR for him. I have Durable and Medical POA. I’ve talked to him about it, but I don’t think he realizes that another cardiac event could be in the near future. As we all know, each one of these types of events makes them worse. He was diagnosed with Alz at Mayo and tried Aricept, but had severe GI reactions and was taken off due to early kidney disease. He’s been through a lot medically in the past 10 years. Is it too early to be thinking about a DNR?