- Can you tell us a bit about yourself and your mum?
My Mom and I were extremely close. She was a single mother when I was growing up so it was just the two of us for a long time. Later on, she remarried and I loved my step-dad very much. I was also happy to get a baby sister.
- Can you briefly share the pre-diagnosed stage of the ailment with us? When were the first symptoms noticed?
My Mom had been in a really bad car accident and subsequently didn’t work for the last 35 years of her life. When she first started dropping things, having dizziness, having trouble swallowing, and not being able to speak very loud, the doctors thought it was due to her car accident. That was about 2 years before her death.
- Did you get the right diagnosis from the initial stage of diagnosis?
At first, there really wasn’t any diagnosis. She went through multiple scans and tests, but nothing really showed up. Once she was seen by a neurologist she was then diagnosed with MSA.
- How did you handle the MSA diagnosis and the information that it has no cure?
At first, I was relieved that someone actually confirmed that something was wrong. Then devastated to know her time was limited. She started showing the signs of MSA about 2 years before the actual diagnosis, so we know she maybe had three years. My sister and I tried to support each other and not be upset in from of our mom.
- Can you share some peculiar challenges you dealt with as a care partner, from providing care for your mum and making sacrifices to be available physically, mentally, financially, and otherwise?
She lived only 15 minutes away from me which was good. I had to take her to all her appointments, get her groceries, do her banking, and generally take care of her. I started out going over once a week, then twice, then almost every day. Near the end, I had to take a leave of absence from work. Emotionally, I was a wreck. My sister helped as much as she could but her job and her family kept her busy.
- What fun activities were you able to do despite the limitations that MSA caused? Please share some happy moments.
My Mom didn’t want to do anything. I offered to take her shopping, I had rented a wheelchair, but she just wanted to stay home. I would watch TV with her and make her coffee. I would fill her in on the goings on at my house. She loved my two daughters like crazy and liked to know what they were up to.
- Do you have any advice that will be of help to MSA patients or care partners? Please share them.
The only advice I can give is to enjoy the time together and don’t waste it because overnight my Mom went from bad to very bad, try to get as much help as possible. She wanted to die in her own place and I was able to do that for her with the help of nursing services and overnight nurses. We had set up a Medical Assistance In death but she didn’t make it to the date we had picked for her.