What's All The Buzz About...

 Written 8/3/23

Here we are again... Physical Therapy Round 2 with a physical therapist that specializes in neurology. 

INITIAL INTAKE SESSION: Thursday July 6, 2023 

This PT session was tough mentally and physically. I filled out the required questionnaires and put my body through some physical tests to help the PT get a baseline. The question: What do you want from doing PT? definitely released some emotions. I broke down in tears because I am starting to realize that I need help because I am not as active as I would like to be. I still cannot shake off that feeling that this isn't where I should be. I am definitely grieving the loss of physical activity. I cannot walk a mile without legs tingling or tightness and spasms. It is frustrating when you want to enjoy a simple walk with your family. 

During my intake I did start to spasm after the 6-minute walking test which made the other tests fun to navigate through. After all of the initial tests we were working on some exercises that I could do at home and my leg/ foot went into a full lock up which definitely made the PT question what or if they could help me. They were impressed with how aggressive my spasm was and the lock up that occurred.

 We did put together a plan that best accommodated our travel to and from Bend. For the month of August, I will go every other week for 1 day and work with the PT for 2 hours. In September, we will do what they call a vacation with a purpose. For 5 days in a row, I will attend a 2-hour session per a day where we will focus on putting together a workout plan to hopefully help alleviate or prolong the spasms. 

I like this program because they are very involved with the community. The Saturday following my intake session we got to attend their SOAR program which introduced many of the activities, workout programs and activities that would benefit individuals with neurological issues. The amazing part about this PT program is that they offer their sessions outside and in different places throughout the living area. We are not stuck in a building staring at walls. We get to be a part of the community and enjoy the beautiful scenery. 

SESSION #1: Wednesday July 19, 2023 

We spent about an hour on the lake kayaking. That's right... Kayaking. It was a perfect sunny warm day . About 15 minutes into the kayaking trip my leg started to tighten and pain levels started to kick in. Every 15 minutes or so we stopped and tried to stretch the legs while sitting in a kayak. Once we finished the kayak adventure and returned to the shoreline, we took another hour where we tried some exercises. Some exercises were done with blaze pods (light pods that show different colors, and you press them with your hands or feet). These exercises were short and sweet due to my tonic spasm in the right leg getting a little aggressive. That is when we decided to try something else... The Bioness.

TRIAL & ERROR WITH THE BIONESS

What is the Bioness? A system that uses functional electrical stimulation (FES) to help correct foot drop and thigh weakness in people coping with the effects of stroke, multiple sclerosis, and other medical conditions. The device detects gait irregularities and then deploys FES to the weakened or paralyzed limb so users can lift their feet correctly when walking. Website:  Bioness (bionessrehab.com)

The bioness definitely brought some joy back into my world because I was able to walk without feeling like I was dragging my legs. The buzzing sensation with each step can be annoying at first but you start to ignore it after a few steps. The PT and assistant were getting super excited because it helped my gait. I did bring up that I was happy to see that the device was helping but was afraid to get super excited because this journey has taught me to take things slowly. Most of the time when we think we found the answer it turns around and later isn't effective.

The device has both a calf and thigh attachment. We did the calf and then added the thigh attachment. The thigh attachment was not connected to my leg correctly so when I started to walk, and they turned it on it felt like someone was kicking me directly in the back. They quickly checked the fittings and adjusted things, and all went well. I told the PT thanks for the kick in the butt. It was interesting to feel 2 different buzzing sensations in the leg with each step. We did not get to play much longer with the Bioness due to time but they are planning to include the device in during my sessions and see if it will allow me to be proactive. I am excited but very nervous to see if things work out or if we need at an alternative route. To have the freedom to participate and not rely on a cane for activities would be beyond this world.  I am not sure that I am prepared to have a device assist in my walking or ability to be active. Does anyone feel prepared? 

SESSION #2:  Thursday August 3, 2023

This session was packed with lots of talking, strategizing and changing tasks every few minutes. We started with a recumbent bike ride which of course started to tighten muscles and get the spasms worked up. After the short little bike ride, we started stretching out the calves and thighs. Unfortunately, we had to get a little more creative with the stretching because I couldn't feel most stretches, or I was too flexible doing them. We decided that anytime I was doing a stretch and felt my leg fight back to just instantly stop and move to the next exercise instead of antagonizing the muscles. Squats responded really well with calming the rapid leg movement. I will probably be asking myself why I am sore tomorrow but then remember the large number of squats I did. We did try to use a tennis ball to roll my foot across to release the start of a lock up, but it just made my toes fan out and start to curl. Once we got the spasm to calm down, they pulled out rotating turn out discs. This is where my hyperextension in my right leg was visible. I cannot feel myself hyperextending so we put tape at the back of my knee to help me visualize and sense where I need to stop extending. We did a few bends in parallel and turned out while on the discs to challenge my coordination and leg muscles. Professional ballet dancers make it look a lot easier in the commercials. 

We did a few more exercises with a TheraBand loop but again my toes started showing off where we decided to move to adding the Bioness unit to my leg. After strapping it on and adjusting this vibration settings my thigh started to fight back so the calf unit was the only one active. It took a bit of trial and error to get these controls right. I felt like a remote-control car being driven in so many different directions. Either I had a complete flexed foot with each step, I was dragging my foot because I couldn't pick it up, the buzz was too intense, or felt like I was walking on the sides of my feet. We eventually got the settings in a tolerable zone and got to walk around the loop a bit. We went to the grass to go a few exercises with a ladder (stepping over, grapevine, hopscotch). They also had me try to step over these little hurdles which became a struggle. I had a tough time lifting my foot off the ground more than an inch. They turned on the thigh unit to accompany the calf unit and BOOM! I had no problem getting over the hurdle. We figure that anything that deals with higher steps from the leg/foot are being controlled by the thigh and smaller steps are being controlled by the calf. 

The PT assistant wanted to do one more thing. She is a former ballerina, so we have been talking in ballet lingo. She had me do a few bounces and then jumps in parallel and first position. At first, I was hesitant because it has been over a year since I have been able to do ballet jumps because it instantly causes a spasm. With the faith and support of these wonderful ladies I was able to end this session on a happy note... I JUMPED and it did not hurt or spasm. I cried happy tears. 

I know that this is only a start of a possible solution to the problem but the thought of being able to take a class again is beyond exhilarating. The unit is a little bulky and would be a little harder to hide under clothing, but anyone can start creating a fashion trend. RIGHT?!  For the next few sessions, we will introduce the Bioness a little more and possibly be able to rent one to try for a week. These units are a little on the pricey side and most insurance companies don't cover them. The ability to rent one to see if it is worth investing, is a blessing. We still have some thinking and money saving to do but it's in the brainstorming phase. Please keep your fingers crossed that things line up right for this to be the answer to our prayers. 

SESSION #3:  Thursday August 17, 2023

Wow! This session was definitely a little more than I expected. It wiped me out when we were done. The first hour I was on the FES Bike (Functional Electrical Simulation). They placed about 5-8 electrode pads to my leg from the top of my behind down to my ankle bone. They connected all of those pads to cords and strapped my legs into the bike. My left leg was made shorter than the right to try and get my right side to work harder. For a few minutes the bike moved my legs for me but then I had to take over and try to keep my pace consistent. It was worse than driving, my speed was all over the place. While I am working on using my legs, I am receiving an electrical stimulation from the pads. It started out with 25% then worked to full intensity which we had to alter a bit because some of it was pretty strong. Once I finished my hour on the bike, they disconnected everything and i walked around for a bit. It felt like my legs were weak, but they said it was probably the feeling of fatigue. We worked on a few exercises trying to incorporate more upper body strength. I didn't make it very long before my spasm kicked in. It took a while to calm the spasm down with stretches and squats. We then found out that my squats were off because my heels were lifting so we spent some time trying to retrain my brain and legs to keep equal weight. Before we finished this session, we did put on the Bioness (calf only). We did some jumping around which felt great to be able to do. We played with dance jumps. We also found out that anytime I had my arms and hands above my head and jumped I started to spasm. When my arms were down nothing happened. We are going to play with that again next time and see we find out. 

MY BAG OF TRICKS

A few months ago, when I began to use a cane more, I decided that it was time to take a proactive approach to best prepare myself for a MS flare up. I now have what I call my bag of tricks. I will come up with a creative name for it later. I am not kidding when I say this bag goes everywhere with me. It has saved my life a few times in the past and I am sure that as time goes on it will be filled with many more helpful items. It was helpful at my last PT session. I thought I would share with you.

Items in photo: Backpack, magnesium lotion, magnesium foam spray, foldable cane, water bottle, ice vest, TheraBand, TheraBand loop, calf compression sleeves, compression socks, ankle compression socks, hand compression gloves, cloth cut to fit calf, ace bandages, deodorant, pocket calendar, candy, ChapStick, magnesium supplement packets, hydration packets for water, kinesiology tape, power charger, Tylenol, Do Terra Essential Oil Rollers, band aides, and neck cooling wrap. NOT PICTURED: Lacrosse massage ball 

I tend to still have a buzzing sensation after wearing the Bioness but over a period of a couple of days it gets better. Pain levels are a little higher, but we did push the muscles to a point of fatigue. Not enough to prevent a spasm from occuring before bed but lessened the intensity. While wearing the Bioness I did notice that I feel very unbalanced. Using this device would require a lot of strength training in the left leg as well to ensure that the correction happening on the right doesn't create more problems with my stability. The Bioness has brought independence back to several other individuals. I am at the start of the race waiting to see if I will go forward or remain at the line. 

I will be working on not remaining in a position for too long and including more stretching through the day. I also started tracking my steps that are taken daily. My husband and I have noticed that when I get 8000+ steps my spasms are minimal. If my numbers are lower my pain levels are heightened, I stand on the outside of my feet and spasms are everywhere. Weird thing is that I go through a weak leg sensation between steps 5000 to 7500. No idea why but we are thinking it's because of the muscles not being as strong and fatigued. You can bet that at the end of the day my pocket calendar will be opened to jot down what I experience for the day. I will then stop with the depressing moment and remember that my story has an amazing support system which a HUGE BLESSING. I Got This but ONLY because I have such wonderful people in my life. Thank you.

NOW you know " What the REAL Buzz is ALL about..."

Source: americasbestpics.com

I chose to NOT GIVE UP!

I AM ME!

I will continue to GROW!

I am STRONG!

I can LIVE my DREAMS!

#RENITASTRONG

I am the INEVITABLE MS DEFYER

WATCH ME!!!