My husband has MSA-P

[Edna Perkins]

My husband, age 77, was diagnosed in 2010. I am so happy to have found this site after five years of reading everything I could find on MSA-P and vascular dementia. I believe he has had it since before his diagnosis as he started having TIAs in the ’90s, strokes in 2006, and the side effects I was observing and thinking from his strokes were probably the onset of MSA. He has experienced most everything all others are mentioning. He is a career officer in the US Army and spent two years in Viet Nam and most certain was in areas exposed to Agent Orange. The VA does not recognize MSA as an Agent Orange disease. He is 20 years older than I. I kept him home with a caregiver for three years and finally entered him into a nursing facility. The falls, choking, blood pressure, sleep apnea, soft and mumbled speech patterns, his eyes are very sensitive to bright light, incontinence, and even the hiccups are what he experiences. When he learned of his diagnosis, he contacted NIH in Bethesda and volunteered for a week long research project for PD/MSA patients. My research now is to find more information regarding the end stages.

[kathy fahey]

hi edna, my hubby has msa -c has had it since 2007 ,its a very cruel disease i have been his carer for that time, he has all what you mentioned speech, incotenance ,chocking , breathing problems and the sleep apnea plus a few other things there doesnt seem to be much research for it which saddens me,
im dreading the day i have to make the desicion to put him into care it must be a difficult time for you , i wish you all the best kathy

[pat pigdon]

I recently lost my 63 year old sister to MSA. Such a cruel disease. She was diagnosed 5 years ago with Parkinsons but medication did nothing to help her. She had to wear a head band attached to the back of the chair to hold her head up. Very degrading. She was placed in a nursing home a few months ago because the carers couldn’t even lift her to the shower. She deteriorated rapidly in the nursing home and it was like she was trapped in her own body with limited movement if any. I tell myself she is in a better place now with no more pain. I just wish there was some better treatment available for sufferers.

[Kim]

I’m so sorry about your sister Pat. It seems like she went very quickly. My husband was diagnosed 8 months ago and appears to be progressing pretty quickly also. We have seen 3 doctors and they all refer to the disease as being ‘wicked’. It scares me to think of what my husband and I will be going through.

[Kiran]

For me this is a relatively easy qutseion, but has a pretty complex answer. The specialty I have actually looked forward to working with is OB/GYN. I find that the ability of a woman’s body to produce a child, endure the amount of abuse it takes during a pregnancy, and the amount of pain endured during delivery is amazing. The joy of being able to be present as life enters the world is truly one of the greatest moments in life. To me that would be the best possible option. I also would love working in the operating room with a surgeon. I have experienced the OR quite a few times, and have been on both sides of the table. I have to say I would love to work with any surgeon in the OR except for Orthopedics. The reason behind that is the surgery’s are pretty brutal when it comes to the skeletal system. Having been in the OR with an Orthopedic surgeon and seeing the use of the saws, hammers and other heavy equipment in order to perform the surgery just sends chills up my spine. I know that type of surgery is not for me. I think my favorite surgeries have to be that of the abdominal cavity. The specialties that I would least like to work for are few, and for simple reasons. Pediatrics is not a specialty for me since I have four children of my own. My Aunt is a neonatal nurse practitioner and I followed her in high school and saw the good, the bad, and the ugly so I can honestly say I could not emotionally handle that type of position. Podiatry is also an area I could not see myself working. The reason behind this is pretty silly, but here goes, I very much dislike other peoples feet especially if they are not well kept. I know in the medical field you will encounter feet on a daily basis, but I could not mainly work with feet on an everyday basis. My last specialty is Orthopedics for the reasons I noted above about the barbaric nature of the surgeries and treatments for the musculoskeletal system. Its just not for me.

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