Terminal Progressive Neurodegenerative Brain Disease Explained:

My Brain Is Dying;

I have a Terminal Progressive Neurodegenerative Brain Disease.

Yep, that's a mouthful! 🤣 Basically, your brain controls everything.... eating, memory, walking, swallowing, temp control, nerves, muscles, etc., and my brain is actively dying. Being cold, and being around people make it worse. It is permanent, and incurable.

Even if you mean well, it's not open for discussion, and we are NOT going to answer questions. I have done all the research. Talked to all the specialist's. I have my own nutrition business. I research something until it's dead. I don’t want to hear your ideas, or what your sweet, little, old, Aunt Betty said, or what new therapy or cure you heard on TV. Not what doctor, treatment, new drink or excersize you think will help. It's rude and inconsiderate. Please, I beg you - keep your opinions and your doctoring to yourself.

Please, don't feel sorry for me. I don't want sympathy or to be treated different. Medicine can help, but it doesn't fix the issues - some will make me sick, and take lots of adjustment. Stick with me - I have my good days and bad days.

Those who've been around me the last three years are expecting me to shake. Maybe I do, maybe I don't. Medicine takes care of some of the tremors. If my hands, feet or head are shaky, it's okay to let me know that you recognize that I'm shaky today. It's also ok to ignore it. Just please don't stare - I am well aware of the fact that I'm shaking. Sometimes I will hold my hand or put it in my pocket. Sometimes I have to sit or grab onto something to balance myself if my legs start shaking. Treat me as you always have. What is a little shakiness between friends?

Someday's I can't write, turn a page in a book, hold a plate, butter a peice of bread, or keep the food on my fork to eat. Sometimes its hard getting dressed, combing my hair or putting on makeup. On bad days, I might need to take a break and try again later. Be patient with me.

I've gotten really good at using my left hand to shake hands with you. I know it may feel awkward, but go ahead and offer to shake my hand even if I'm shaking. It allows me to be able to still feel normal. If I can't use either hand, I'll just tell you politely that I'm not shaking hands today.

Hugs are hard for me. I've never been a fan of hugging, but when you add the shaking and me being unbalanced, it makes it uncomfortable for me. Please don't expect a hug. It's not you. It's me.

I may lose my balance, stumble, and need help walking or need something to hold onto. I'm not drunk. Some days, I may need help getting out of a chair or climbing steps. It's the disease. My body will continue to get weaker.

Sometimes I may freeze. Sometimes I can't lift up my foot. Give me some time and It will go away. It's just as awkward for me too.... like I'm telling my foot to move, yet it stays there... it's the weirdest thing.

My memory isn't always good. Words have a way of disappearing. Most of the time I know what I'm trying to say, but the word isn't coming out. Sometimes I have to describe the individual word until I can get to it. I may use alot of hand motions or I may stop talking altogether - sometimes my brain is all scrambled. 

Sometimes I cry and appear to be upset. It is the disease. Keep talking to me, ignore the tears - I will be ok in a few minutes.

You think that you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression. that's the disease (I hear you. I have the same inelligence), It just isn't as easy to show facial expressions. When someone is saying something funny or making people laugh, I have to tell myself "thats funny, I'm supposed to smile." - it takes way more thought and effort than it used to.

Sometimes swallowing is a problem. Eating is difficult- like food won't go down - it even happens with things like water and ice cream. Sometimes I may drool, This bothers me too. I'm sorry.

Don't tell me to stop losing weight. I'm not trying to. It's the disease. Most of the time food doesn't sound good, look good or taste good. If I do eat, alot of times it makes me feel sick. Or, the food gets stuck in my throat and I can't swallow. Sometimes I eat very little. Other times I eat a whole slice of cheesecake!

I am almost always cold. That's also the disease. My body doesn't regulate temperature anymore. My thermostat is broken. I take a blanket with me just about everywhere. When I get cold, it can take hours with multiple blankets to get me warmed back up.

My nerves don't always send the correct signal to my brain. Sometimes I feel bruised everywhere, even if no one is touching my skin. Sometimes I have internal tremors, where I can feel my arm moving, but to look at it, its not.

Eating, digestion, going to the restroom.... it is all complicated and changes by the minute. It's not fun at all. If I need to excuse myself 4 times in 20 minutes, I'm okay, but it's just what I gotta do.... it's the disease, roll with it.

I'm getting 'dropsy'! I drop stuff all the time. I can't always feel my grip on something loosen. To me, I may feel like I have a firm grasp, but yet it falls out of my hand and I can't feel it.

We are ready to go somewhere and as I get up, I can hardly move. This stiffness or rigidity is part of the disease. Let me take my time. I'll get there eventually. Trying to hurry me won't help. I can't hurry.  If I seem jerky when I start out, that's normal. It will lessen as I get moving.

You may notice my voice is changing. I sometimes have trouble singing. I open my mouth, but nothing comes out. Thats the disease. Listen to me. Let me talk, and get my thoughts together and speak for myself. I am still here. My mind is O.K. My thoughts are just slower. I want to be part of the conversation, please let me speak.

I can't sleep at night, most of the time, that's the disease too. It has nothing to do with what I ate or how early I went to bed. I may nap during the day. I may fall asleep during our conversation. I can't control it. Let me sleep when I can.

Being around people makes all my symptoms worse. It is very stressful just getting ready to leave the house. I don't come to a lot of events. And if I do, I usually leave early. I'm not trying to be rude. By the time I'm back home - I'm completely worn out and it sometimes takes days for me to recover.

If I offer to have you come for dinner, dig some plants to share with you, hold your baby, make a cake, arrange some flowers, ect. Please let me. It may tire me out, but it's something I want to do. I still want to feel needed. 

Also, home is a safe place for me, it's where I can be my most normal 'old' self, if you come to me, it's alot better than if I have to leave. It's just the way it is.

Please be patient - I need you. I am the same person, I've just slowed down. I may not be able to do some of the things I used to do, but I want to continue to be a part of your life, and enjoy my life the best I can.

And remember.... not everyday is a struggle. On some days, I am good. I work in my flowerbeds and garden. I still love to drive (and I'm good at it!). I still make food for my family, keep my house well, run a business www.srkindred.com from home, and do all the things a wife and moma does. I still enjoy traveling, decorating cakes, making crafts, crocheting, working in the barn with the goats and chickens, loving on my spoiled house rabbit 'Smushy' - spending time in nature with my family and singing when I can. I am the auction chairperson for the Delaware County Farm Festival. Some days are really good. I don't need to be reminded that a bad day is around the corner... I'm well aware of that. Please let me enjoy having a good day!

“It’s not how long you live, it’s how long you live well.”