Last week of summer dead ahead
This has been a challenging season for many reasons. Continuing skin surgery, ongoing and back-to-back heat waves, high humidity and rising gas prices. I was happy to flip the page to September and will be happier still when the last day of summer passes.
Summer has always been challenging for me (sometimes I claim that’s why I became a teacher ,,, out of school for the worst season’s weather.) But though every summer brings heat and humidity, I seemed to have a lot of company complaining about it this year. We had a few absolutely beautiful days in late August, with fresh dry air and reasonable temps in the seventies. September opened with a return of the heat but is calming down now. Nights are dark with cool breezes that allow a better night’s sleep. I’m a winter baby, after all.
I talked with the counselor this week, and decided with her that the need for continued talk therapy is lessening, as the meds for depression have settled me into a comfortable acceptance of ‘what is.’ She asked me how I would define happy, as I had told her of our mind-mapping group of artists with whom we meet occasionally to strategize ways to promote our arts. The center of my mind map is the word “happy.” The purpose of the maps is to identify what our main goal is, and what we are doing toward reaching it. I told her I feel that I have reached my goal, and that now I think of it as ‘maintaining happiness.’ Rick is absolutely the center of my happiness. Being at home with him brings me peace.
I talked next with the psychiatrist who prescribes my antidepressant and asked him what would follow? He had told me when we first met that he would want to see a ‘complete remission of depression’ before discontinuing the meds, and that he would rarely recommend that at this point in the year. The darkness of winter is not a time that he would want to ‘try doing without’ a prescription for his patients. And before discontinuing it in the spring, he would want to see that remission last through all four seasons. I like his cautious approach.
He explained that my depression is a chronic, long-term condition that is not ‘episodic’ and so cannot be remediated by improving conditions around me. It is a biological depression, (which I understand is caused by an imbalance of chemicals in my central nervous system, and probably some structural damage due to the MS lesions and related brain atrophy.) The research I’ve done through the years since the diagnosis of MS continues to validate the challenges I’ve been facing for so many years.
I’m still not convinced that what I have is different than what my dad had, but I’m willing to consider that he may in fact have had MS rather than Parkinson’s. He never had a prescription for dopamine, which I believe is the only true test of determining whether one has Parkinson’s. If dopamine relieves the symptoms, it is Parkinson’s. If dopamine does not relieve symptoms, then it is not Parkinson’s.
I’m scheduled for a week in November to return to the NIH in Bethesda, MD for the continuing study seeking early biomarkers for Parkinson’s. I do trust those folks to know what they are looking for, and what they are and are not finding in my central nervous system. To date, they tell me I do not have Parkinson’s. They, and my neurologist here in Massachusetts, are sure that I have relapsing remitting multiple sclerosis. They witness the ongoing damage to the structures in my brain (lesions and black holes, continuing atrophy and a small, slow-growing tumor – a meningioma) and advise me to continue to monitor that with my neurologist.
I share a’ closed board’ for folks with MS on Facebook, where I read of others’ challenges and progression. There are some who continue to take the discredited interferons as they are young and trying very hard to stay in the workforce. There are others who have made ‘menu changes’ as I have and work toward avoiding inflammations and relapses with apparent success. And there are still others who have tried every DMD (disease-modifying drug) that doctors will prescribe and have still progressed rapidly toward secondary progressive multiple sclerosis. And there are those who have carried the label of primary progressive multiple sclerosis and experience losses of mobility, speech, eyesight, etc. It is a place where they can share their fears and successes privately, as the comments and posts are accessible only by members of the closed group. It is a mutually-supportive group, and one where I try to make encouraging comments and ask for informed advice. I have made some good contacts there, and feel comfortable within the ‘virtual group’ conversations.
I will see the dermatologist again next month. I will see the Parkinson’s team in November. I will see the MS neurologist in December. I’ll see the counselor and the psychiatrist again in about ten weeks. The skin surgeon is secondary, depending on what the dermatologist finds. I’ll see the thyroid specialist again in the spring. The number of doctor visits is beginning to lessen this year, much to my relief.
Rick and I will be working toward opening a Quilt Shop in our barn. It is something I’ve long thought of, since our local five and ten general store closed down several years ago; I miss their fabric department and notions. We’ll start slow, acquiring fabric as we can afford, month by month. We’re going to limit the posted hours to four day a week, with Sunday Monday and Tuesdays reserved for doctors and family visits. We’ve begun to spread the word among friends here in town and on Facebook. We’re hearing affirmations that others in town feel this will fill a need and may be a successful venture. My wish to sell enough books to replace what I’d lost by retiring two years earlier than planned hasn’t worked out as I’d thought; I’ll continue to write but will have lower expectations for earning money that way.
I may not be able to beat the depression without meds, but with meds, and with the ability to continue to remove negative things from my surroundings, there may come a day when I forget that I have more doctor appointments than social engagements. I do miss my friends at school and my identity as a respected school teacher, but I have Rick and we have all that we have here, together. If we can pay the bills, buy food, and travel to see our grandchildren now and then, it will be enough.
- Parkinson’s sufferers told ‘you’ll get better’ (scotsman.com)
- Linda Ronstadt Says Parkinson’s Took Her Ability to Sing – ABC News (blog) (abcnews.go.com)
- I didn’t know mind mapping software could do THAT! (mindmappingsoftwareblog.com)
- Multiple sclerosis appears to originate in different part of brain than long believed (eurekalert.org)
- Brain Inflammation Linked To More Severe Parkinson’s Symptoms (albanytribune.com)