Filled with gratitude and utterly frustrated….huh?

A day of mixed emotions of gratitude mixed with utter frustration, all to do with e-stim. I went to my first appointment today, an assessment.

First the gratitude:

The appointment was great and proved to me why it is so important to see a physical therapist. I thought my drop foot leg was stemming from my glute muscle, but learned today, that it is my hip flexer in front that isn’t working properly. The PT showed me how to use the e-stim machine and how to flex my muscle as the electric wave pulses through and exactly where I needed to place the electrodes. He gave me three exercises to do daily to compliment the weakened muscles that I am attempting to rework surrounding what doesn’t work neurologically. He said on a scale of 1 to 5, that I was a 3. He explained that that meant that I could flex the muscles, but was unable to lift my leg with knee bent against gravity.

The scale:

  1. Able to lift against a hand pushing down
  2. Able to lift against gravity, but with difficulty against a hand pushing down
  3. Able to contract the muscle, but unable to lift against gravity
  4. I forget this one and I can’t find it easily online (might be has sensory ability, but unable to contract the muscle).
  5. Unable to move, contract or feel anything as a quadriplegic would experience

He also showed me how to rehabilitate my walking, which I have been doing right. Which are concentrating on flexing my foot and lifting my leg straight up and not out in a left arc swing. The e-stim machine comes with reusable electrode pads, which might last a whole month of daily use if proper care is done after each use. They are $20 to replace. But, he said that you can buy rubber electrodes that are more permanent. Cost about $18.00 for two, with them I will need to buy ultrasound transmission gel, about $8.00 for 8 oz/250 ml. That is easier and cheaper. He says the rubber electrodes are what they use all day, everyday for months. I was given an appointment in two weeks to assess my progress, which of course will depend on my willingness to do the exercises and e-stim every day. That which, I am sure, we all know I will do.

I do have one more point of gratitude that I will add at the end, because I think it important to end on a positive note whenever possible.

Now, the frustration:

If you’ve been following my journey to get e-stim in place, then you know how long, complicated and arduous this has been. For those who haven’t, I’ll recap. Money is not something I have readily. I am on disability and so have a very limited means of income. The Wahls Protocol diet itself is expensive, especially when the supplements are factored in. It is necessary for me to seek subsidy for e-stim. I have a disability worker who has been gracious, available and patient with my situation. That I am grateful for. It is the system that frustrates me. I applied for and received funding for an inexpensive TENS/EMS machine (they run between $150 to $5,000, mine was $150). This required, prescriptions from my MS Neurologist for the machine and another one for physical therapy along with a letter. Did all that, got all that done. Now, all I need is the physical therapy. Specifically, what I need is exactly what I described at the top. I won’t get into every little thing that complicated this, because if I do, this blog will be twenty five paragraphs long. Ultimately, I am having a hard time getting this simple physical therapy covered for a diagnosis that everyone know’s and agrees on. That would be AISH, my Neurologist, Alberta Health and the Physical Therapist. I have five PT visits that I can have per year under Alberta Health, unless they are neurological (didn’t know this till today). If that be the case, then I have to have special permission. In other words (although, I’m sure you get it), if I sprained my ankle, I can use the five visits for that. But, for my situation, because it is neurological, I can’t. I got a call a few hours after my appointment and was told, that they couldn’t put the session I had through because it wasn’t covered under the “five allowed” because its neurological. They are going to contact my case worker for paperwork to request that this be covered. I told her, its 75% there, they (AISH) have the two prescriptions and the letter from my Neurologist. All that needs to be sent now are these questions that I’ve been left to give the physical therapy places to cover under their assessments.

I have had access to rehabilitation via the MS clinics in years past. They have helped me,  especially occupational therapy for the cognitive problems I’ve had. My experience is, that as I get worse, they help me adjust to that. They’ll help me learn to use a cane, or help me get a walker then teach me how to use it. How to maneuver in and out of the bathtub once I lose my ability to get in and out of the tub. I’ve had this drop foot leg from the beginning, 2004, it is my oldest damage. Today is the first time someone told me that it stems from the hip flexor. I was given these exercises that the PT gave me a few years ago amidst a raging attack that was causing my leg to worsen. But, they were no help in the middle of that. Today, I am in a new ball game. One that is helping me get better and in this arena, those exercises will work. They can’t make the lesion disappear, but the diet I am on is helping me become stronger everyday and in this way, the exercises will help me compensate for that weakness. What I find most upsetting is that I’ve been offered several times to have a motorized scooter ($1,300 to 3,000) and professionals are there to see to the paperwork. This is taking forever to get into place and all it is are several PT visits and a $150 machine, both of which will assist me in rehabilitation. Something, in my experience, I’ve not seen made available for MS with the point being to get better. As I said, it is more to learn to deal with new damage, not for rehabilitation. Roar!

Okay, back to the gratitude:

I’ve had the e-stim machine for a month or so now, I haven’t opened it till last night. I thought, I really need to at least look at the book before I bring it to the PT. It came with a 9 volt battery. I put the battery in, the machine doesn’t work (you’d think I’d list this under frustrations, but I have a reason why). Now I’m thinking it probably is the battery, but then what if it isn’t? I’m playing scenario’s of having to find the receipt and go to the store despite the red lettered paper staring at me from the box, “If you have a problem, don’t go to the retailer, call this number.” That bespeaks of never ending headaches and automation, and mailing things in and OMG!. Okay, I got a lid on that ten minutes into it, pointless till I rule out the battery. That left me with the acceptance that I would need to walk the two blocks to Shoppers in the morning before I am picked up to go to the Southland Leisure Center to exercise and then go for PT which is in the same building. My ride was coming at 9:10 am.

Alright, alright….the best part!

I walked the two blocks to Shoppers in 7 minutes! 7 minutes?! If I take the bus (same distance), I always have to leave 20 minutes before, to be sure I’m there before the bus comes. I’ll remind you, without a cane. I got what I needed and walked the two blocks back, without resting, 7 minutes again. And yes, it was the battery. The free battery was crap. I went to the Southland Leisure Center and worked out for 40 minutes, showered and headed off to my appointment, which required me to walk and practice the exercises given by the PT, not arduously, but no way, could I have been able to walk, then workout, then go to an hour long physical therapy appointment. Is this ever worth all the headaches? Yes it is! And ultimately, my gratitude far exceeds my frustration!

 

Bonne Sante

 

Artwork from Dreamstime: https://www.dreamstime.com/royalty-free-stock-images-happy-sad-face-faces-abstract-doodle-drawing-image38425409

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