Kel’s Blog

”If you see someone without a smile, give them one of yours.” – Dolly Parton

Well I am a couple days late with this one, but had some friends over for girls night Saturday so used most of the day running errands and cleaning up the house. I knew I’d eventually get to it. I went last Friday for just a regular follow up with my family physician. I actually see one of the Nurse Practitioners. I had several things I wanted to bring up to her with one being my balance issue even though I have an appointment in Columbus on October 22. I know it’s more an issue for me to bring up at my Neuro apts, but I also like keeping my PCP office aware of things. I was due for lab work so that happened and now I have a few abnormalities we are dealing with there. Will share more once I have more answers. I have to go back in a month for more labs and in that month I am not allowed to have any Tylenol. This is going to be hard as I struggle from severe leg pain some days. My tremor still tends to be doing pretty good. I find I only seem to have a slight tremor when I rubber stamp for my handmade cards. Other than that they are doing GRREAT! I am still struggling with my walking. I have not started that walking plan yet, but it’s a work in process. I just started with working on eating and drinking better. First step for me is to get rid of pop. One step at a time. The reason I mention it here is I hope that then I know I am serious about making this change. For those who know me know I have drank pop all my life. When I say I drink pop I mean it’s nothing for me to drink 3-4 20 oz a day. For me I think it’s a crutch. I have tried to quit in the past and have only made it like 10-14 days. Then I quit. I am on day two of no pop and have switched to tea with stevia in it. So far so good. Until next time.

”A positive attitude gives you power over your circumstances instead of your circumstances having power over you.” —Joyce Meyer

Well I am a day late with this post so I apologize. While my tremors seem to be doing much better these past few weeks I am having trouble with my balance. Studies do show that a small number of people who struggle with essential tremor can have balance problems. Also a side effect of having the DBS surgery is having balance issues. My mom and I recently went on a small vacation to Michigan and did a lot of walking. We did more in the four days there than I do in a week. While it was good for me; it was also challenging. Some of the sidewalks were not the most even so that makes a difference. I did trip a few times, but never fell. That is a good thing as I can not afford to fall. I have noticed when I am having my leg pain and also when I am more exhausted is when the balance is at it’s worse. I am wondering if I get out and walk a little more regular if that will help. I am definitely going to work on that. My next follow up in Columbus is in October so will definitely mention it to the Nurse Practitioner. Until next time

”Go the extra mile. It’s never crowded.” – Unknown

For my regular followers I want to thank you for checking this weekly. However, with life getting busier I think I am going be switching to every two weeks doing a post. Unless something new is going on with me and then I will do an in between update. I have been doing so good though that I find I don’t have an update every week. This week though I was crafting again and did shake a little while stamping. I remembered when the Abbott representative told me back when I had the surgery that when I come for programming that if I bring the supplies with me to show the Nurse Practitioner Rozena how I shake a little maybe she can help define that. I love to craft so I am never giving it up, but to do it with less shakes would be nice. Everything else though that I used to struggle with is so much easier. I know it’s summer time so eating a lot of soup isn’t usually happening, but my mom and I went to one of our mom and pop places recently and they had potatoe soup. That is one of my favorites. I ordered it as I haven’t been able to eat soup in public in years. It’s the little things in life. Well not much to post this week. My mom and I leave for a vacation in less than a week to Ludington, Michigan. It is where we used to vacation every year when I was a kid. We are both excited and in need of a break from every day life. Until next time…

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

– John 16:33

Sorry that I am a day late with this week’s post. I wanted to give an update on how I am doing. My tremors have been pretty good. About the only time I have noticed a little tremor in my hands lately is when I am making my handmade cards. After being in two tremor groups and reading posts I see that most of us if not all of us have some sort of hobby that the tremors get in the way. Whether it is knitting, cooking, painting, photography, playing an instrument or any paper crafting and more it is difficult to do when you are shaky. I never really stopped making cards while having tremors I just would fight through it as I feel it is good hand therapy. At least that is what I call it. I feel if we can it’s best to continue our hobbies to our best abilities. The other night I was stamping and my tremor was just little so I bumped my stimulator up two notches on both sides which is .5 each time so that only had me up to 2.10 on both sides. It seemed to help and crafting was much more enjoyable. My speech as you remember was affected recently. It is mostly better. I find when I am really tired or stressed now is when I have the issues. So I can kinda control that. Until next time….

I have shared some of my creations of homemade cards below. Have a great week.

Ok so this post is not about my DBS, but about a hobby I love and trying to get the word out there to get patients going through chemo some love. I love making handmade cards and have found this group that has card angels that sign up to send weekly cards to a specific patient going through chemo. They are having trouble getting their word out there so I

am using my blog today to make this post. If you know anyone, you are a chemo patient yourself, or have a way of getting the word out please share. I have attached a flyer you can use to get the patients signed up. I know there are more and more patients that get diagnosed daily and what greater thing for them to have a card angel.

”Go the extra mile. It’s never crowded.” – Unknown

Today’s post won’t be long as I am doing pretty good and not too much to report. When I went back to the neurologist you will maybe remember I was having some speech issues and also some numbness in left hand and foot and leg. Now the numbness I have dealt with prior to surgery, but the speech has come after DBS. I have had some slurred speech, but this new problem is not that. It is difficulty talking. Not like those who can’t find the word. I might have the right word in my head, but can’t get it out. I say that as some friends try to say I have that problem too. I am sorry it’s not the same. After having some reprogramming about three weeks ago the speech is somewhat better. It is not an all day thing and mostly comes when I am tired and end of day. However, it can be frustrating when talking on the phone is part of your work day. Plus I am sure I have said this more than once that “I LOVE TO TALK.” So not being able to do so easy makes me very sad. You know the other day someone asked me if I was glad I did the surgery. Yes I am as I got a lot of my life back after having it and these set backs are just that. There is so much more programming the device can help and it’s just figuring the right settings for me. All of us with ET are different and on different paths and I tell myself I am only at the half a year mark of having it so it only goes up from here. Shout out to the awesome team at Ohio State that I go to as they don’t rush me through the apts and they answer all my questions stupid or not. And there are no stupid questions. There are a lot of people in the world who know not a thing about this disease and how debilitating it can be and how many other deficits we can have with it. Until next time…..

”The future belongs to those who believe in the beauty of their dreams.” – Eleanor Roosevelt

Sorry I am behind on this post as life happens. My mom and I drove up to

Columbus on Tuesday July 9th for my 6 month follow up with my Neurologist. Overall I am doing really good from DBS surgery. I am having a few deficits though which is nothing that a few tweaks in the programming couldn’t help. A tiny bit of a tremor on some days, some speech issues, and some numbness and tingling in my left hand and fingers and also occasionally in my left foot and leg. I had written down a few questions I wanted to address while I was there. Although I understand the purpose of having the stimulator, it was in an online zoom meeting that someone said we are our best advocates and should understand what’s in our bodies. With that being said I want to know and understand everything when it comes to the equipment that is inside me. I want to know the type, how each part works, and everything about it.

A couple months ago I was diagnosed with anxiety disorder. I have now been on my new medication a couple months and the anxiety is much much better. Because my anxiety is better I have wondered if the stimulator strength should be turned down and that would help what little tremor I have now go away. I mentioned that to the Neurologist and he suggested that he do some checking with my programs. So he first turned the left side off and did some tweaks and made it better. Next he turned off the right side and made some tweaks that helped the deficits. I asked about what side was I truly making changes to if I have the tingling on the left or right side. Reason being is I know that the leads on the left side of the brain controls my right side and the leads on the right side control my left. I know I should have already know this answer, but going through is procedure and process up to it is a lot and a lot of information is given to you so now I have had more time to think about it. Well when it comes to on my controller if I am having symptoms on my left and I make changes on the left side of the controller then I am controlling the left hand, and vise versa.

My appointment with Neurologist was a huge success. I have been home now from that appointment now for 10 days and am almost a 100% better than before the appointment. I still have some speech issues, but they aren’t every day and as often as before. I am hoping with time and a few more tweaks on my side even that will go away.

I do have to share a funny from that day. When I woke up Thursday of the same week I was like whoa my tremors are back at before surgery. I call my mom every morning so while I was on phone with her we were trying to remember what the Neurologist said about leaving me on program 3. Which he redid the program 3 and 4 with his new tweaks. After turning the app on I realized that before leaving my appointment on Tuesday that he did not turn me back on. Once I turned it on I have been doing great. The joke with my mom is I talk so much I made him forget to turn it back on. lol. Until next time….

So of course there never is a Columbus visit without my mom and I going somewhere to eat. This visit we went somewhere where neither one of us have been before. It was really yummy, but not sure if we will eat there too often as we felt it was rather pricey. We ate at Zoup. Mom had a chicken salad sandwich and broccoli cheddar soup. I had a tomato and mozzarella sandwich with chicken pot pie soup. Pictures below. Yum!!

”The smallest act of kindness is worth more than the grandest intention.” – Oscar Wilde

So over the past two weeks or so I have been tweaking between the four programs I have on my DBS controller to see which is the best for me. I think I might have found the right program and settings. I can now say I am pretty much at 80 percent better with the tremors. In saying that I still have days when speech is hard. The boyfriend says sometimes I sound drunk, but other days I have trouble finding the right words to say. It’s like it’s hard to speak. It’s frustrating, but I have a sixth month follow up with my Neurologist on Tuesday July 9 th so I am hoping with some reprogramming on his end we can better perfect it. I have been doing a lot better with my anxiety lately so that is why I thought maybe I could turn it down a bit. That is definitely something I will bring up to him. I also had a day the other day where I was having trouble paying attention. I am not sure if that has anything to do with the DBS or tremors, but I will definitely be mentioning it. I also am having trouble with my legs, but like I said before I was diagnosed with neuropathy awhile ago so not sure if any of it could be related to the ET or DBS system. Since my tremor is better on the setting I am on I am going to leave it there until my follow up appointment. Until next time……

”Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” – Nhat Hanh

I am writing this short post earlier in the week due to I am starting to find the program I need to be on with my DBS system. My tingling has mostly gone away and starting last night my speech was better. I am still having leg issues, but I have neuropathy which is not related to the tremors so when I go back to the Neurologist in a couple weeks I will definitely make mention to that. My anxiety is getting more and more under control so I have been turning the unit down to see if that’s the fix. I feel I am getting close. Stay tuned until Saturday….

”Don’t quit. Suffer now and live the rest of your life as a champion!” – Muhammad Ali

When I woke this past Tuesday June 10th I realized I was not tremor free. I didn’t let myself get too worried or upset. The first thing that came to my mind was a saying my oldest brother has said to me a lot lately. “This too shall pass.” So I went about my day. Was it because I am nervous that my grown son is moving into an apartment with one of his buddies and I want it to work out for him? Is it because my anxiety is much better so it needs turned down? Could it be because Thursday June 13th it’s been two months since I lost my best friend and I struggle daily with that? I don’t know and it’s Saturday and I still don’t have it 100% figured out. I am really trying not to get discouraged, but am writing this post to let you know not every day is a good day after DBS. Sure I have a lot going on so it could be any of my issues or a combination of a couple. Other than the hands tremoring again I am having tingling in my left hand and I trouble with my speech. Before surgery I would have days where sometimes I struggled getting the words to say. I am having that again this week. It can be quite embarrassing . I also am having trouble with my walking and legs which I have neuropathy, so I try not to get too excited about it. Today is Saturday and I ran into a cupboard in my house. Not really hard so I am fine, but after you have DBS you have to be careful not to hit your head or have any accidents where you have a head trauma. With all the weather changes in this beautiful state of Ohio I have also struggled with my asthma. With that being said I have had to take a lot of breathing treatments. I guess that could have a little something to do with it as well. I have four different programs on my device so I have been trying each one through the week and tweaking the strength to see if I can hit a perfect again. I’m not far from it, but just can’t seem to get there right now. Now after sharing all of that I want to let you know just because I am having a bad week the tremor is still not as bad as before surgery. I thought it was important to share that. So I am still glad that I had it and wouldn’t change anything. I would do it all again as the good has way outweighed the bad. So I will continue today and the next with tweaking it and see what I can do. Until next time.