I started to write you on Sunday. There is just so much to say, and I'm not sure what to say yet - to Marcia, to friends/family and to Riley and Ryan.
Truthfully, I don't want to upset anyone before I have to, and before I know more about PPA. So I've chosen not to say anything to anyone but you, two out of state friends of mine, Cindy, Marcia's mom and my parents until we see the neurologist tomorrow. After tomorrow, I hope to be more open about where we are, but a lot depends on where Marcia is. If she doesn't want this widespread right now, I'm not sure what I will do. Please talk to Todd about this as you want to. I just don't want anyone to say anything about PPA to Marcia until she understands the diagnosis better and is comfortable with me talking to others.
I overheard Marcia on the phone last night and she isn't acknowledging PPA. She's still hopeful there's a hormonal or alternative medical option and that this will just go away in a couple of years. Honestly, I don't think she really knows what PPA is. She is definitely aware of aphasia, but Primary Progressive Aphasia is not a term she had been aware of, and not because of her condition. The psychologist wasn't real direct with her comments last week, and it would be easy to think of PPA as a possibility. Her comments landed on me differently because I had done research after our first meeting in early August.
I spoke to the psychologist Friday and she told me that it's not a bad thing that Marcia is hanging on to alternate therapy options because this is a lot to process for anyone right now. And people "progress" differently. As I look back at my notes, acupuncture and other holistic things are encouraged because they can't hurt. But there was a lot more discussion about counseling, support systems, coping, etc... She also suggests I come to see her to work through issues our family will be facing and I don't see any possibility where I won't need professional guidance.
I've been in contact with two people who are doing clinical trials on PPA. One from the University of Illinois, which has a PPA research program. Their goals are modest, to be honest. It's clear there is no proven treatment here. I've also researched acupuncture and it's really a medical landmine as it's not really respected medicine, but is supported by the World Health Organization and the US National Institute of Health as being effective in treatment of neurological conditions. I've found an acupuncture place here in Morristown (the Acupuncture Center of NJ) that lists "neurological diseases" as a condition they treat. I'm not unrealistic, but have to be hopeful. I have more significant doubts about menopause being anything to rely on. However, I am encouraged not to let this be the only diagnosis. There are other options that could be causing this, like "hypothyroidism". A woman I work with insisted her mother's doctors test again, and again for this and eventually a test showed positive. Medication has brought back her language. Maybe the odds of something else are low, but we have to exhaust options vs just accepting her condition will deteriorate.
I am definitely praying for a miracle. No question I am overwhelmed right now. I had two very difficult conversations with Marcia's sister Cindy and their mother over the weekend. Both are incredibly supportive of me and right now, much stronger too. I think tomorrow is going to be difficult and there are going to be very difficult days ahead of us. For now, I think we need to treat her like we always do. I think she's more concerned about convenience of treatment than quality. She'd rather find speech therapists, acupuncturists nearby and is not ready for counseling. Her psychologist thinks it is okay to start close by, but we should see how the sessions go. It would be helpful to encourage her to get the best treatment and focus on herself right now. I really don't want to see her work more, but working less might not be in her best interests either. Apparently she does better with very familiar things (teaching a class where repetition of words doesn't pose as many problems as doing things ad hoc), and teaching does this.
I have to find counseling and have to see what my insurance covers. I am going to look into support groups too. Meeting with Pastor Coile tomorrow afternoon, if I think I can handle it. This is really a devastating diagnosis. But life isn't easy and this is an unplanned challenge I’m just going to have to deal with.
No comments:
Post a Comment