Strictly medical

Over a year ago, January 2015, I made up my mind that it was time to really do something about my walking.  It had gotten so bad that even at home I felt off balance and like I was going to fall down.  It had started 5 years prior and was getting worse, and I was really getting depressed about it.  It was time I take action.   (See previous blog posts "dentist",  "Walking"  and "Fear of Concrete" for more.)  I no longer had the balance or the confidence.

I started by seeing my primary care physician.  I discussed with her how I thought part of it was mental and part was physical.  She prescribed me an anti-anxiety medication and referred me to physical therapy.  For 3 months I saw my physical therapist and religiously did my exercises daily.  I felt myself getting stronger.  But it didn't do the trick.  So I asked my  PCP to refer me to a doctor who specializes in cerebral palsy to find out if there were any new advancements in treating cerebral palsy.  I mean, I hadn't seen a doctor regarding my c.p. since I was 19 years old.  My doctor referred me to a Neurologist and a Physiatrist (rehab doctor).

Both doctors were very positive that I would walk again without assistance and presented me with different options, sure something would work for me.  It was such a positive thing for me to hear.  That I could get better.  I started taking Baclofen, a muscle relaxant, commonly used for spasticity in cerebral palsy and multiple sclerosis  patients.  It helped tremendously!  I was walking with ease again at home.  But it wasn't the cure, because I still had this mental portion of it that when out in public and in parking lots I still froze up.  So I started seeing a mental health professional about the anxiety medication I was on, wanting to either adjust the dosage or try something different.

It's been over a year now and I've tried 3 different medications for anxiety.  The upside to the anxiety meds is that they have helped with my OCD, other anxieties, and I am no longer depressed about my walking, but it has not quite helped with the anxiety/fear of concrete/anxiety of falling in public.    So I have decided to go back to the Physiatrist to try Botox treatment to relax my muscles in my toes.

My doctor thinks I would greatly benefit from a Baclofen pump.  It's much more effective than taking Baclofen orally, the dosage is significantly less, micrograms rather than milligrams, and  you don't get the drowsiness side-affect.  But the idea of having a pump the size of a hockey puck surgically implanted under my skin in my abdomen with a catheter running around to my spine to administer medication directly into my spinal fluid gives me the creeps.  *shiver*

So, if the Botox does not work to where I am completely walking independently, then I have come to the realization that I am going to just have to suck up my pride and accept the fact that at 37 years old I may need to get myself a walker to use in certain situations.  I am finally at peace with that idea. 

Regaining Independence

I like being able to go to the grocery store by myself with the kids after picking Kiana up from school, rather than having to wait for Tim to get off work so we can all go. 

t-ball

Scott doesn't like to use the T, he would rather the ball be pitched to him.  He wanted me to throw the ball the other morning but after a few times he realized I wasn't a very good pitcher.  So he put an imaginary ball in my lap to throw.   He was perfectly entertained hitting an imaginary ball. 

He needs his Grandparents.

Kiana said to me yesterday, "I wish you were like other moms and didn't fall down."   I think she worries about me falling.  Whenever I look like I might lose my balance she always reaches out to me.

I had a personal victory yesterday... I walked into Walmart to take Kiana to the restroom and didn't use my cane or a cart.  I just walked in from the parking lot totally on my own (Tim stayed in the car because Scotty was asleep).  I haven't walked in public like that in 5 years!  I felt so comfortable and confident, and totally proud of myself afterwards.  A huge accomplishment for me.  :)

And today, the kids and I went to Safeway where we went to get Scotty some juice (he has a cold).  It went very well.  I wanted to attempt the post office too to get stamps but Kiana didn't want to get Scott in and out of the car again.  :)

I am regaining my independence.  

Appointment

Yesterday Kiana wanted to come with me to my physical therapy appointment. We had to park pretty far away (for me) so she offered to hold my hand to help me.  I had my cane but was still struggling.  But then I would stop, breath, lift my cane and walk along fine just holding onto Kiana's hand. She said to me, "mom, you walk better without your cane."  Holding her hand really didn't provide much assistance, and I didn't want to squeeze her hand; it was more for a sense of confidence.  We finally made it into the doctor's and I no longer needed her help. 

Two of her school friends were in the waiting room so she sat next to them at the children's play table.  She pulled her LeapPad out of her backpack.  One boy asked her what else she had in her backpack.  She said, "nothing. Just my LeapPad."  The boy asked why she needed a backpack just for the LeapPad, why not just carry it?  "So I can hold my mom's hand."  He asked why she needed to hold her mom's hand?  To which she replied, "because she needs help."  And then she went on to show him her LeapPad.  She said it so matter-of-factly, so confidently, as if there was no question to her as to why she would hold my hand.  

After my appointment I walked easily to my car.  Before we got in the car Kiana asked if we could go get shave ice.  Oh, now I know her reason for coming with me... not because she wanted to get out of the house, or because she wanted to help, or because she wanted to be with me, nope, it was because she thought it would earn her shave ice.   :)  Love her!

Victory for Mom

For the very first time I took my 2 kids out on my own. They came with me to my physical therapy appointment. Both of them were very helpful, especially Kiana who put Scott's shoes on him, unbuckled his car seat, and lifted him into the stroller. She even handed over her leap pad to him when he didn't want to stay in the stroller on the way out. I allowed myself plenty of time to avoid any unnecessary stress.