Aging & HIV: Cognitive Changes

My quality of life has been poor for some time now. I’m making progress but very slowly, in my opinion. As I age I am noticing a decrease in my cognitive abilities. I believe it is related to many things but often comes back to a full group of conditions that impact my daily life. HIV is a stable treatment for me. I fear that other conditions are causing a decline in my cognitive abilities. I’ve experienced peripheral neuropathy for several years and it seems to be a consistent burden of pain impeding my ability to exercise.

Declining functioning...

Decreasing exercise is having an impact on my brain’s functioning and cognitive abilities. I have increased pain in my knees from arthritis which is also impacting my leg functioning. I need to walk more but not so much that I am unable to control the pain levels. My maximum is about 1.5 miles before I need to rest. I sometimes walk to a destination and walk home later. I find riding my bike is the best circular motion to manage pain. Unfortunately, colder weather has gripped my vigor to be motivated and keep moving. We’ve experienced colder than usual temperatures this year and snow and ice accumulations, albeit in smaller amounts, still make it treacherous to maneuver around. I’m wearing boots daily to ensure I have the traction needed to prevent falling.

The need for cognitive compassion

One might ask at this point “what’s this got to do with cognitive compassion?” Anyone older is constantly being assessed for falls, so much so that I fear falling. I am careful and I’ve learned my lesson. But it gives me no joy to get out on a snowy day to enjoy a vigorous walk. I fear the unknown. Can I handle what may come my way? I believe so, but I am also cautious. Just how do we convey our feelings and fears to our health care providers without triggering alarm? I liken it to cognitive compassion. Hear me. Don’t judge. I don’t need additional stigma. Don’t jump into action. Listen and dispel any myths or concerns that you may lead to a compassionate and creative response. Remain positive. That is how we all find comfort to alleviate our fears. Bring about change from within by motivating me to find my own pathway for encouragement.

Aging alongside HIV

I like to keep abreast of research related to HIV & aging and other conditions associated with an impact on my quality of life while living with HIV. There have been many articles and reminders about HIV-related dementia or cognitive disorders that may make more of an impact on PLWH (people living with HIV). Regardless of where I feel in that spectrum, I do feel a cognitive decline in myself whether it is HIV or aging related. However, I would hope that my medical providers would treat me with cognitive compassion. I don’t feel like an invalid nor do I feel like a fall waiting to happen. I simply am more aware of and concerned for my own safety when it comes to activities I once freely enjoyed. One of my neighbors uses walking sticks to track through the hallways. I like walking outside, but I’m more cautious. Do I feel vulnerable? NO! But I certainly don’t want to slip, lose control, and end up on my keester. I don’t need a bruise and I don’t want to feel sore for days. I don’t want to say that I fell. My balance is well. My gait is well. My confidence, not so much.

Seeking motivation

I’d love to have a personal trainer to set me on the path to healthy living. Someone who can understand my limitations and encourage me to be the best I can be. I need guidance. I need motivation. I need a clear purpose to see and feel results that matter. I’ve known good habits in the past and how valuable they had become. I also know how easy it is for me to fall out of habit and fill my life with other meaningful activities. I often experience detours in life with a simple phone call or message. It’s getting back on track that is hard to accomplish. I need incentive. I need people who can find value in the simple pleasures. I’m a person of habits and prefer setting date, time, place to consistently perform. Without structure I lose my focus. At one point I tried to go to a gym five days a week. I would psych myself up so I would not feel guilty about missing a day or two. It gave me assurances that I would meet my goal of three days each week. Since then I’ve lost my two best training partners and some of my motivations to enjoy time together.

Finding a routine that fits

Some might say, just find new partners. My dearest friends are often more disabled than I, making it hard for me find like companions. One dear friend has a home gym he’s invited me to enjoy but he’s never home. He works hard and for long days, including weekends, so that makes it difficult to connect. I guess I don’t want to work so hard to become active again. I really need a steady pace that easily fits into my daily routine with time for adjustments as needed. This week I’ll get my bi-monthly Cabenuva shots and they leave me very sore for 48-72 hours after. That intense hurt really hinders my ability to be active and sometimes makes me feel lethargic. But that’s the pain of progress that I choose. A few days of discomfort for 60 days of freedom from daily pills. I think it’s a real win for my life.

Building confidence through compassion

My providers need to demonstrate cognitive compassion. Let’s discuss ways to build confidence to avoid falls, to walk securely, to become more active in winter as well as other times of the year. Riding a bike on a bright day should not be treacherous. It should be a desirable alternative to staying home and vegetating on the couch. (I know how to do that well in the winter months.) I need motivation to start and keep moving and the ability to know when pain interferes with activities. Resting is just as important as keeping active. However, being inactive for too long is not good for any of us. Many of our aging agencies are stepping up and striving to keep us active and in good health. I find I’m somewhere in the middle between high energy classics and strength training or chair exercise. Neither appeals to me. Either I have to keep up with an experienced instructor or keep myself from falling asleep in a chair. I do like to ride my bike but I don’t feel very safe this season of the year. If I can focus on inside opportunities, I would feel more comfortable.

How do you practice cognitive compassion?