It's been awhile since I have posted. I've received an email from a woman with a loved one with the CBD form of FTD. I'm waiting to hear back from her about sharing her story. She could use some help and support, and I'm hoping someone reading her story maybe able to do that for her, including the folks at the Association of Frontotemporal Degeneration.
I'm in a better place these days. It's been over a year since my husband's diagnosis. Do I notice change? I do. His OCD tendencies, "industrial behavior", are far more evident. His inability to comprehend written materials that come in the mail seems more serious. Changes are subtle, and yet sometimes seem glaring. He is grumpier. Gets frustrated a little more easily. I am not letting him drive at all now. He is still suffering from the double vision, yet the latest visit to the ophthalmologist last week indicates it continues to get better. The doctor believes it should be gone by the end of December. However, as always, something else has showed up. Dave apparently now has a hemorrhage in that same eye. So that will get checked again the first week of December.
We also had his latest scan with the neurosurgeon to check on his chronic subdural hematoma. It continues to shrink and isn't causing any apparent problems. However ...... I'm getting tired of saying that!!! However, he is concerned about the 4th nerve palsy, considering the atrophy in his brain, so we'll see the neurosurgeon in April for another CT scan.....never ending.
I've started a new job after 30 years with the same non-profit. It was time for a change. I needed something adventurous and new in my life. Something positive. It was a great move. I'm really enjoying learning about a new organization. I took a cut in pay, and chose a cut in hours - 30 to 35 a week - and while things might be tight financially, I am feeling such relief. I didn't know how poorly I felt, how depressed I was about life, until I started feeling SO good about six weeks ago. I am so glad I took a leap of faith, took a risk. It feels like a whole new chapter of life. With the stress at work and the stress at home, I just could not take it anymore. So now that work is manageable and I'm looking forward to it each day, and I really enjoy all the people I work with, home life has also improved greatly. I'm even looking at adopting a beautiful dog that needs a home. I feel she will be good company for my husband during the day, and the routine of her care will fit right in with my husband's ordered schedule he keeps. And she'll be good company for me when I get home each day! Maybe even greet me at the door! We have a trial visit with her this weekend, and that's another thing I'm very excited about!
Life feels good. I feel strong. I feel positive. It's amazing. So it's time for me to start spreading it around. I want to find a way to contribute to the efforts of awareness and support for FTD. I'm ready to get back to it! I'm checking into trying to get a support group started locally as there is nothing currently that I've been able to find.
We'll see how long this part of the ride lasts! But it sure feels good to be on the upswing for a change. Stay tuned!
Thank you so much for sharing your journey with FTD; I appreciate your honesty about your feelings and experiences in dealing with this disease. My sister was very recently diagnosed with FTD; she is 55 and my baby sister. I am shocked to the core and so is the whole family. We also have a large family; 6 of us siblings; we have one brother and 5 sisters. My sisters and brother will be a great support but, of course, we know that much of the care taking will be done by my brother-in-law. Right now he is a bit in denial. I am just trying to learn all I can and to find the best doctors available. I hope to get her into the FTD clinic at Johns Hopkins. While my sister is still in the beginning stages of this disease; she is not herself….we sisters have been commenting for probably a year that "I don't know who she is". I feel like we/she the family have been robbed of our beautiful, loving, charismatic sister. She is a shell of her former self. She is still driving (questionable) and is currently home alone during the day (questionable) but we all worry about her. I am happy to hear that you have a new job and a new outlook on life. It is great to hear that you are feeling positive again; I wish you the best and intend to follow your blog. Thanks for sharing.
ReplyDeleteKathie, thank you so much for sharing. I have my ups and downs. The holidays were not easy only because the symptoms of the disease stand out more with his grumpiness. This is the only place I feel I can get all the feelings out. I like to think I'm a strong tolerant person, but it is getting more challenging. I SO appreciate knowing folks are reading this and offering support to me. THANK YOU!
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