Kel’s Blog

”Today is not just another day, but another possible chance to achieve what you couldn’t achieve yesterday. So get on your feet and chase after your success.” – Anonymous

So I thought I’d pick a topic that we all do. That would be “COOK”. Before I got the DBS cooking was hard. For example I would try to make grilled sandwiches and couldn’t flip them very well with shaky hands. They would fold and not look like a sandwich and would be a hot mess. I love grilled peanut butter and jelly sandwiches and with shaky hands I would have a mess with the peanut butter and jelly everywhere. When I would make my son’s pasta for the week I would go to spoon it into his containers and due to the shakiness would have pasta and sauce all over the counter. I would make a cup of hot tea and when I’d go to carry it to the table I would spill a little due to the shaking. If I wanted to make cupcakes or muffins filling the muffin tins would be challenging. I would get the batter everywhere. To flip the meat that I was cooking would be hard then I got tongs and it was a little easier. Even buttering toast was a challenge. Using measuring cups and spoons with both liquids and non liquids would be challenging as well. I would spill a little almost every time I would cook and need to use measuring cups and spoons. Eating soup with tremors is not possible at all. Carrying the bowl with soup from the kitchen to the table was hard to not spill.

Now after having the DBS surgery cooking is so much easier. I am able to make grilled sandwiches now. I am able to make my son’s pasta without spilling it everywhere. Using both measuring cups and measuring spoons while cooking and baking became easier. I spilled way less. I can now eat soup without spilling. Filling cupcakes and muffin tins became easier. I actually get the batter in the muffin tins now. When I make meat and it needs flipped I am able to flip it now without a problem. Now I can cook and make anything without the shaking. It is so nice.

Until next time….

”A beautiful life does not just happen. It’s built daily by prayer, humility, sacrifice, and love.” – Anonymous

So I thought I’d do an update on my anxiety and how my DBS system seems to be working for me. I have been on my new anxiety medication about 7 weeks. With that being said my anxiety has been much better lately so therefore my tremors have gotten better too. Back when the anxiety was affecting the tremors I bumped the stimulator up two notches on both the right and left. That seemed to help. A couple days ago my boyfriend noticed I was slurring my speech. I decided then to bump the stimulator back down the two notches to see if that would help my speech. I had thought if the anxiety is better then it might not have to be bumped up those two notches. After doing that my speech was normal again and my tremors were 100% gone. That’s been about a week ago and so far still doing good.

Until next time…..

”If everything was perfect, you would never learn and you would never grow.” – Beyonce

I am writing this post to inform those who may still be following this blog as to what you do when you need other tests and procedures done after having your DBS placed. I turned 51 this past February and was running a year behind to get my colonoscopy screening. The main reason being last year I was going through all my appointments to get the DBS surgery. Well this week I was scheduled for my first ever colonoscopy. My instructions for the DBS were to put it on surgery mode during the procedure. Let me stop there as I am not sure I have mentioned in any of these posts that I have a controller (which is just an iPhone) and also have the app on my personal IPhone. So I have the capabilities to turn the DBS system off and on all by myself. There is a mode on the program that is called surgery mode so once I got all worked up for the test I switched it in that mode. Once I was done and waiting for discharge paperwork then I was able to switch it back. Now in saying that I have the Abbott system so if you are reading this and have one of the other companies I am sure that it’s probably the same instructions, but just make sure with your surgeons office or representative.

Now if I need to have any MRI’s in the future I can have one of those also. My device has what’s called MRI mode. So before I go back for the MRI all I have to do is switch it to that on either my remote or the app on my phone. Once I am done with the test then I can just switch it back. Same instructions if you have any other company please make sure your instructions are the same before having one.

Any elective surgery you would need down the road you would also need to set your device in surgery mode. A physician should document the DBS settings prior to surgery in case the device resets during the operation. Seek physician suggestions if you have any questions.

For routine x-rays, CT scans, ultrasound, and mammograms you don’t need to do anything with your device. However, if you need to have an EKG or EEG you must turn the unit off. You may NOT have electroshock therapy or transcranial magnetic stimulation (TMS). Thank you for visiting and until next time.

”Life itself is a privilege, but to love life to the fullest-well that is a choice.” – Andy Andrews

In this blog I’m going to discuss before and after I’ve had DBS surgery and how I felt about going out in public. Some of the things I did that may or may not help someone reading this going through the same thing. Whether it’s Essential Tremors you or someone have these suggestions may help you. You also may be able to fit it to other conditions you or a loved one has.

Before getting my DBS surgery the biggest thing I worried about was being stared at. I hate it and am always feeling like everyone is looking at me. I know deep down that’s not true, but some of us can’t help but to think that. I wondered what do they assume is wrong with me. Do they think I am a drug addict, or maybe I have Parkinson’s as a lot of people do not even know about essential tremors, or maybe they think something else. Back about 20 years ago when I first was diagnosed I remember being in Target and writing a check (which thank goodness very few of us still have to even do this anymore) and I was shaking so bad I was worried the clerk thought I was detoxing or something. I was so embarrassed, but at that time didn’t say a thing. I went about my business. Another time my young son and I were out to eat and I remember him saying mom I thought you were going to throw your food at me as I was shaking so much. Now today I can laugh at that, but then it upset me as I didn’t want him to realize at age 4 his mom was dealing with this.

About 6 years or so ago I was working part time at the local movie theater for some extra cash. A fellow coworker (whom mind you was a teenager so we know they do not care what they say for the most part) saw me shaking while I was filling popcorn containers and said are you nervous or something is that why you shake so much? Finally she was the first person I said no I have a condition called Essential Tremors and they are not going to get better but only worse over time. After that if I felt like someone noticed I’d say I’m sorry I have a tremor. I didn’t care to share that with just anyone now and it felt good. So my lesson here is if you have Essential Tremors or anything else that people either make a statement to you or stare at you just share with them you have a condition called Essential Tremors. If they want to know more then educate them on it. In my time working at the theater I was serving drinks to a couple ladies whom were there to see a movie and one of the women said excuse me, but do you have Essential Tremors? I said yes I do, and nothing I have taken is helping them. She encouraged me to seek another opinion. I did, but was not impressed.

Before getting the DBS I limited my foods to easier to eat foods. I would almost always drink with straws. Now I can add soup and drink out of a glass. I don’t worry about if once and awhile I shake. One of the first places my boyfriend took me after my DBS got turned on was for Mexican. I was able to eat chips and salsa without wearing half of the bowl of salsa. I am sure there are others who understand that. Before I barely ate the chips and salsa. Now I enjoy every bite.

So life is too short to worry about what people think. Share your condition with those who think you are nervous or whatever and more and more people will be knowledgeable about the condition. Until next time.

”The only limit to our realization of tomorrow will be our doubts of today.” – Franklin D. Roosevelt

Hi there. So I mentioned about two blogs or so ago that I was diagnosed with anxiety disorder. That being said this anxiety plays against my stimulator. I would still say I am at a 70-80% better than before surgery even with the anxiety. I started a new medication for the anxiety about 12 days ago. I started weaning off my 20mg of Lexapro (for depression) to 10mg for 14 days and then will move to 5mg for 14 days and then discontinue for good. When I started doing that I started taking the new anxiety medication. This new medication is called Pristiq and I am on 25mg at night daily. Now I like to give things about two weeks to a month before I decide if it is working. I feel like my tremors are better on this so far so I can only imagine as time goes by it will even get better. Now to work on the triggers that cause me to have the anxiety. One day at a time. Until next time….

”Keep your face to the sunshine and you cannot see a shadow.” – Helen Keller

Several months before I had the DBS surgery I joined a Facebook group for Essential Tremors. While at the start I didn’t say anything on there or talk to anyone specific, but read a lot of posts that helped me answer some questions and it is nice to see that you aren’t alone in this disease. There are a lot of people who don’t understand Essential Tremors so what best person to have on your side, but someone who also has been diagnosed with it. Now this dosen’t end with just Essential Tremors. You can find a group for just about anything you need. This group was another way for me to make the decision on which stimulator system I wanted to go with. Now when I say that I didn’t ask anyone’s opinion. I just quietly read ALOT of posts on the page that helped lead me two different ways. Then also read a lot on the internet about all the companies leaning towards either Boston Scientific or Abbott. The third company is Medtronic’s which was the first to have the system.

One thing I find helpful in these Facebook groups is these people are struggling with the same things that are hard to do and the person who doesn’t shake aren’t and may not be able to sympathize with you. For example the simplicity of placing toothpaste on your tooth brush. Shake and try to do it and you may end up with toothpaste in the sink, on you, or on the counter, or even all three. It gets old when it has happened every day for 20 something years. We as a group can rant to each other and the other person understands.

A second reason I like these groups is that you may have found something that works for you that others may want to try. Hints on how to put make up on when you are shaky for example. Or medication that one has tried that helps some, but the other person hasn’t tried it yet. Now of course for that one they’d have to talk to there doctor first, but we are our best advocate and if anyone has help it’s worth trying it for ourselves.

I also belong to another group where people who have either had DBS, are thinking about it, have a family member or friend who has had one placed or maybe they just to know about DBS in general. They do monthly zoom meetings. It is not run by professionals. It’s just us coming together to discuss our situations, and success, or failures and possibly help answer non medical questions for those looking into it. I joined the meeting for the first time this month. It was fun meeting those with the same diagnosis as you as we are all in different stages of getting the stimulator it’s fun to just meet and learn. Just because I already have the device doesn’t mean I am healed and don’t have my problems or questions. Those who have been following this blog from the beginning know that I recently have been diagnosed with anxiety disorder and so that is fighting against the stimulator. So that’s just an example of one thing that I wanted to see if anyone else deals with this. I just started a new medication for this so stay tuned as next weeks blog will be about this.

In closure I just want to say again how important these groups are. If you have essential tremors and are reading this or know someone whom these groups may help please have them reach out to me by email and I will let them know what the groups are called. Please share my blog with friends who may know someone with Essential tremors. Thank you all for reading.

My email is [email protected]

”Have a positive attitude towards life as you begin this day. I wish you strength to be able to make the best out of today.” – Anonymous

Well on the morning of March 26, 2024 I went to my Family Practice office. I see one of the Nurse Practitioners. My main reason for going was to discuss a few things that came up when I was going to all my appointments at Ohio State. First thing was almost every time I went to an appointment or one of my surgeries my blood pressure would be higher than normal. However, when I would be ready to leave it would be back to normal. I told the surgeon I would mention this to my NP next time I saw her. Second, when I went for my preop visit prior to surgery the physician that did my work up told me I had possible triggers for sleep apnea. She said now I can’t tell you that you have it, but it would be a good idea to get checked for it. Which my second surgery anesthesiologist agreed with that. Third, I wanted to see if I could get something for my anxiety.

I also thought I could be due for possible bloodwork so I made sure not to eat prior to the appointment.

Well while at the appointment the MA did a depression test which we know I have sometimes worse than other times. She also did a test for anxiety which I really don’t think I have ever done. After doing both of those it was apparent that I have anxiety worse than my depression which sometimes makes me want to wonder am I truly depressed or anxious now. I will stop for a minute as this is a good time to address that these are mental illnesses. Most people do not like to discuss this, or let other know they have them, but if we don’t then I feel we can’t learn from these diseases. If you remember in an earlier post anxiety is a trigger that can make essential tremors worse. Now it’s easy for us to say well just don’t be anxious; think happy thoughts. That is easier said than done for most of us.

After having my work up that day I had the new diagnosis to add to my chart of anxiety disorder. At first it upset me and then after a bit I realized at least I am seeking help for it. The NP ordered genetic testing to help her decide which medication would be best for me. We will get the results about two weeks from the appointment. She put me on a temporary medication right now called Buspar which seems to be helping.

The reason for this post is the anxiety is fighting against my DBS working a 100% for my tremors. Now I am not saying I am back to before surgery. I am still doing so much better and do not regret the surgery at all. I just have to tweak my programs to fit my daily needs and get a better grip on the anxiety which once I get fully medicated for it I should notice a huge difference.

Stay tuned for the anxiety treatment and the improvement it will have on my DBS.

”If you don’t like the road you’re walking, start paving another one.” – Dolly Parton

So I thought I would take the time during this post to share what I have found is easier to do since having my DBS surgery. So bare with me on this post.

The first thing I noticed was putting toothpaste on my toothbrush instead of everywhere on the bathroom counter. I know it’s the small things, but sometimes it’s the small things that mean the most at least to me.

Shortly after surgery my boyfriend and I went out to a Mexican restaurant and eating chips and salsa was so much easier. I was able to eat them without spilling them all over my top. Which is a huge plus.

One of my hobbies is hand stamping homemade greeting cards. It is a lot easier when I don’t have the tremors. I love making the cards and mailing them out to family and friends.

When I need to put air in my tires I used to let the air out when I shook so bad. Now I go and can perfectly put air in my tires without paying twice that is.

Eating out in general has gotten a lot easier. I am a little less self conscious.

Going on a dinner date with my boyfriend I was able to put makeup on after I cleaned up which really made me feel good about myself.

Cooking has gotten easier. When I make my son’s pasta for the week I am not spilling it everywhere.

I find myself not as embarrassed to go out in public on days my tremor is gone. I would feel like people always look or stare at me and wonder what is wrong with me.

When I used to go to the ATM or pay with my debit card anywhere it used to be hard to get my card in the slot. Now when I am tremor free it is so much easier.

For work I use a computer and mouse a lot just like I assume others reading this do as well. Life is much easier at work after having DBS as both the keyboard and mouse are so much easier to use now.

Carrying any drinks and drinking them now is a lot better. Not as much spilling going on.

I never have had the best writing tremor or no tremor, but after surgery it is much easier to write.

Blog tease:Come back next week to learn what diagnosis is fighting against my tremors/stimulator……

“Just be happy, it drives people crazy.” – Unknown

So on Tuesday February 6, 2024 my mom and I headed to Columbus for my third post-op/programming visit. This is the first visit my mom was able to go with me since surgery and she was happy to do so. She, like my brother, is just as interested in how all this works and wanted to see what programming was like. Well I got all checked in and waited patiently my turn. They took me back to a room and we waited for them to come in. I explained to my mom how it was going to go. This appointment was probably not going to last as long as things for the most part are going well. Now if you remember correctly after leaving my last programming appointment on 1/8/24 I was feeling really good and tremor free. However, when I woke the next morning I had a slight tremor back. I shared that information with Rozena whom is the Nurse Practitioner and she was a little confused as why that would be. Now they were not that bad, but she got to see them a little bit. At that time I had two programs on my app to choose from and was sent home on that last day on program two. I decided to give that program a chance for the first twelve days of being back home even though the next morning I had a slight tremor, but then went back to program one before going to this appointment on 2/6/24. It seemed to be working well so between trying to figure out what happened to make program two not work longer than one day and making a third program we just decided to leave me on one when I went home this time since it seems to be working so well and when I am home I was encouraged to check out the new program, and see how that works for me. They are still happy with how well I am doing and say I have so much room to grow. That is great news and I will take it. Unless I have any issues I don’t go back again until my six month follow-up with the Neurologist in July.

This appointment was two days after my birthday so we had some things planned while we were up there after the appointment. I had looked up a couple days before whether or not there were any unique craft stores near by. So after we left I put the address in my Mapquest for the craft store and we wasted an hour by going there before we went and visited my Uncle. I did get paper for card making and new set of markers so it wasn’t all wasted. Lol He lives in Columbus and my mom and I were going to join him and Karen for lunch at Schmidt’s as my birthday lunch. They have the best brats and cream puffs. Until next time…..

”Happiness is not something ready-made. It comes from your own actions.” – Dalai Lama

I am typing this post for those who might be following with tremors themselves and debating treatment, for those who have other medical conditions that this is triguring them to seek out treatment, and also for my friends and family who are following to let them know that just because you have the procedure not every day is 100%. I still have to work to find what I call my new normal. I will take a pause here in my post to let you in on the factors that can make essential tremors worse.

1. Caffeine intake or cigarette smoking.
2. Emotional stress or anxiety.
3. Exercise, fatigue, or lack of sleep.
4. Hunger.
5. Illness.
6. Specific medications.
7. Temperature extremes.

When I woke on Tuesday January 9th, 2024 I was excited as remember the post before this one when I arrived home from Columbus the day before my tremors were 100% gone. Everything was great. One of my days off through the week is Tuesdays. I had plans to go out to lunch with my friends (aka my older folks) that day as I hadn’t been in awhile. Then I had my first time going to small group in the evening. I was looking forward to both. It was also going to be my first time to drive since the end of November. Well my tremors were no longer 100% gone when I woke. Now don’t get me wrong they were nowhere close to where they were before surgery, but my right hand did have a slight tremor. My first thing I did when I noticed the slight tremor was cry. I thought how could it be so perfect the day before and now I have a tremor. I thought about switching the remote back to program one, but decided I needed to give it more time on the new program. I did bump the strength of it up two notches which is only one point total. Now that I have had time to look at that day I realize I was a little anxious to drive again, and to go to my small group. I can’t help that as it’s in my makeup that I get nervous anytime I do something new. I feel that is why I had a what I call bad day with my right hand. It was still more manageable than way before surgery, but it’s just hard to go from a perfect day to a little bit of tremor. That is what people need to understand that just because we have had the surgery we can still have a bad day every now and then. From my personal experience though I would say the bad days are still 80-90% better than my old bad days so that is a good thing. And as my mom and oldest nephew both told me when I explained this day to them. “It hasn’t been that long Kelli so you need to give it time.” Until next time…..

COOKING WITH GRANDMA JUDY

BROCCOLI CHEESE SOUP

2 c coffee cream. 4 T chicken bouillon (4 cubes)

1/2 c butter. 1 T Worcestershire sauce

1/2 c chopped onion. 2 c shredded cheddar cheese

1/2 c flour. 2 pkg frozen chopped broccoli,

3 c water. Cooked and drained. (20 oz)

In Dutch oven or large stock pot, melt butter. Add onion and cook until tender; stir in flour. Gradually stir in water, cream, bouillon, and Worcestershire sauce. Cook 10 minutes, stirring until thickened. Do not boil. Stir in cheese. Add broccoli and cook until heated through. Serves 6-8.