This Is Where We’re At
I have talked about my weight loss journey, my paleo journey, and my keto journey. I’ve taken lots of trips, been on a couple of cruises, and I talk constantly about my writing journey.
Today, I want to discuss the family journey we seem to be taking right now, the one we are all on with my dad as he struggles with Parkinson’s Disease. It is truly a family journey as we all try to help him, to figure out what works, try to understand when he talks, and do all of it while preserving his dignity.
A few years ago we noticed that his speech was getting progressively slower. We weren’t sure what was going on, but as the years went on, it just never improved. While we were living in southeast Texas, my brother took Dad to a neurologist and he was tested for stroke, or mini-stroke, they were negative and he was sent to speech therapy.
After my mom passed away, Dad’s speech got slower and slower, plus I began to notice other signs that looked like Parkinson’s, but he kept saying that four doctors told him he didn’t have it. I took him to a new neurologist and he confirmed that he did, yet he calls it Parkinson’s Syndrome. At first, it was his speech and the severe tremor in his right hand that alerted me something more was going on, but then I noticed his stooped, crooked posture and his sometimes shuffling gait. His shoulders are locked up and he has been through injections and physical therapy, but still can barely reach out or up-but the man still plays pool!
It is what he enjoys and we will play with him until he just can’t do it anymore. He struggles sometimes to get his arms in the right position for a shot, but they are still accurate 75% of the time. Other times, the tremor makes him miscue and his frustration is palpable. We tell him not to worry about it, it’s still good practice and a form of exercise. He needs to keep his body moving as much as possible. I realize he is 85, but I want him around as long as I can have him here.
Although he was in denial, he seemed willing to do what they told him and keep going to speech therapy…as much as his insurance would cover anyway. None of us pushed him to practice at home like we should have, so my brother would make him at least call his shots while we played pool. Now, he is even resisting that.
So far, he isn’t having swallowing problems, but he barely speaks at all, I’ve resorted to using a white board because I can’t understand him anymore. His appetite is fine, he is otherwise healthy, but we have lots of doctors we go see…a cardiologist, his skin cancer dr, his neurologist, and his general practitioner. Tuesday we are going to see a movement disorder specialist who I’m hoping has more solutions to our problems. I don’t think his neurologist knows enough about Parkinson’s to help him, and I’m praying that this new guy does. Because we are running out of options.
He is on one of the PD medications- Carbidopa/Levodopa- yet it hasn’t done anything for the tremor. His neurologist said other than brain surgery, or deep brain stimulation, he doesn’t have any other treatment suggestions. I don’t want to believe that. I got involved it’s an online community for patients and caregivers on Facebook, they say there could be more options.
I try to suggest that he call his shots when we play pool, but he ignores me. (He does it for my brother though) I take him to all his appointments, my brother keeps his eye on his finances, and my oldest son, who lives with Dad, makes sure he eats and fixes or buys his dinner. He is on a modified diet, he rarely eats sugar, bread, or pasta. Dave fixes dinner every Sunday and we have him over for dinner and some family time. So again, everyone is contributing in some way, that’s what families do.
My brother and/or I go over several times a week to help him fix lunch or take him out because preparing food is so difficult for him. I wanted to get him special silverware made for people with movement disorders, he said let’s wait and see what the new dr says. I wish he would let me help him more, but he is so proud and I think that’s what makes him resistant to change.
I wish I knew what he was thinking, I’d love to know where he stands with all of this. Does he want to keep trying things, or is he sick of doctors? I just know he stays frustrated and that makes me sad and all I want to do is help. I worry about him constantly even though my son and my brother and I are all doing what we can, it never feels like enough to me. The only way I’m going to feel better is if he moves in with one of us, but I know he isn’t ready for that yet. I don’t want to take away his independence, I’d rather he make the decisions. Like the driving thing, he pretty much just let me start driving him everywhere instead of me or my brother saying give me the keys.
Patience and love is all I have to give, that and my efforts to help him manage this disease. This is the journey we are on and we are all in it together.
Do you have suggestions or need help with someone you know dealing with Parkinson’s? There are lots of places to check out online, Micheal J Fox Foundation and the Parkinson’s Foundation are good sources of info. Dad participated in the Speak Out program through his speech therapist and they have a center in Richardson, Tx. (We have not been there, but he did part of the booklet they provide through his speech therapist)