Nov6

Home

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Hello and welcome to my page, Mo’s Revenge on MS.  I have set up this site to keep a journal of my trip down the road to a better life with HSCT (HEMATOPOIETIC STEM CELL TRANSPLANT) to halt the progression of my Multiple Sclerosis.  I hope you follow my trip through fundraising, waiting for an appointment date, having the procedure, and the best part of the journey – the recovery and the chance to possibly regain some of the movement I have lost over the years but mainly to put a halt to my MS Flare-ups.

Please enjoy the trip!

Jul27

PHYSICAL THERAPY today

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Today I walked about 40 feet twice with a rest in between and one final round of about 20 feet before my right leg said enough. It was very tired and I couldn’t pick my foot up another step.  It seems that I am not putting as much weight on my walker or it is my imagination.  I am going to walk hear at the house for Dad to see if he can tell a difference. Jacinda gave me some exercises to help build my muscles up around my knees to help with the heperextending my knees.  I am doing the stand up set down without locking my right knee.

Next thing I will worry about is getting up out of a regular chair. Until I can walk any length of time, I don’t have to worry about that cause my power chair seat is farther from the floor than a regular chair!  One step at a time but after 3¹/² years I am still seeing and having improvements!

Jul24

Physical Therapy again!

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Well I am trying to get back walking again  but it is hard with a hyperextended right knee which makes me drag my foot. I am able to bend it a little more than I could.

I had to buy a new Swedish knee brace because I had lost enough weight that the large was just too big. I needed to lose the weight but I wasn’t expecting it to cost me $200 for new brace and $100 for platform attachments for my walker. Oh well price I’ll pay to hopefully walk again some day. My scales say I’ve lost 49 pounds. Hopefully I can continue.

I can only walk about 20 feet before I can’t pick foot up but I’m not putting as much weight on my walker. I did 4 rounds of 20 feet with a short rest in between!   It’s looking promising.  I have only did 6 sessions so far.

Keep your fingers crossed!

Jun29

Taopatches

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I am doing better and now I am ordering a new product being introduced in the US.   They are called Taopatch and made in Italy.  They are patches you put on nerves and joints. They have found that it helps MSers with there damage from the disease. They act as acupuncture so we will have to wait & see. I won’t get them until August when the campaign ends. I found this on Facebook just as I did HSCT so far it has worked for a lot of people overseas. Luckily they aren’t no where the cost of HSCT but not covered by insurance.

May20

WOW-almost 4 years

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Haven’t posted in over a year so thought I would give some info. I am so happy that I followed thru and found out about HSCT. I have done things that I couldn’t do 5 years ago. I have cooked 3 meals, capped & cleaned 2 ¹/² flats of strawberries, washed dishes and doing my nails with Color Street Nail strips. My nails haven’t had color on them since I was diagnosed in April 1992.

I’ve mopped and swept, can you believe I am bragging about doing housework?! Can’t wait for my housekeeper to start when this is over.

I would still like to find a doctor that would prescribe me some Rituxin  but can’t.  I am still in my power chair but that’s okay since I have both hands right now.

My balance is better but I still don’t try to stand very long without holding onto something (don’t want to fall).

Got a deck and ramp built around 3 sides of my house and put a door in my master bedroom so I can get around outside and not be in the mud. My dog, Shadow, likes it more than me, I think!

Hope everyone is staying safe during this COVID-19 virus. I haven’t been to a Walmart since March but Amazon really likes me not going anywhere but the local grocery store.

Be safe everyone and take care.

Oct13

10/13/2018

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My stay at HealthSouth continues and will end the 16th unless they can get me some more time. They are hoping for some more days. I will then do some outpatient. They have been working with me a couple days a week on the AutoAmulator.  This is a video of me on it this week. I tried sizing it smaller but haven’t had any luck so here goes:

Oct4

Day 2(10/4/2018)

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Second day of my inpatient therapy and they pooped me out today. They put me thru speech therapy which I don’t have to do thanks to my stint with HSCT and then occupational therapy and then the biggie – physical therapy. Today I walked 1.2 miles with the help of a simulator and I didn’t realize how much it would wear me out. I used muscles I hadn’t used in over 10 years.

Tomorrow they are going to work with my Bioness L300 leg stimulator to see if they can get it upgraded so it isn’t a glorified doorstop!

I also want to say Happy Anniversary to my two favorite people, Mom and Dad. It is their 66th year of putting up with each other. I don’t know what I would do without them. They are babysitting their grand furbaby!

Love you Mom & Dad!

Oct3

October 3, 2018

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It’s been a year since I have been on here and most of you have probably been wondering where I’ve been.  Nothing new going on to really write about.  Broke my left ankle a year ago and that put me in a boot for nine weeks and I lost all the movementi had regained in my legs from HSCT and then in March I fell and busted an elbow open.  So far since then I haven’t had any more falls.

The good news is, I am doing inpatient rehab therapy at HealthSouth to try and use my new UpWalker.  I walked about 15 feet today with it and that is 15 feet more than I have walked in 10 years!

Tomorrow is another day and maybe I’ll go 20.

Goodnight

Oct20

Day 346 (10/3/17)

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Good morning everyone!

Today is my last for rituxin and I am finished with all that stuff. I am so happy.  I have had my last hep B shot and did a flu shot on 9/26.  No more until October 2018. Now they have come back and said to not do

I vaccinations until a year after you receive your stem cells back.  Oh well seems like I am always jumping the gun!  I can tell that some of my old symptoms have gotten worse since I’ve done my vaccinations but it could be all the stress I have been going thru.

Bp 136/64.   Pulse ox 97%.  Temp 97.6.  Weight 256 vitals on that day.

10/20/17

I really don’t have much to say except 2 days and it will be my stemmie birthday!

I got my new (to me) handicap van Monday and it has made my driver’s lives easier, they don’t have to manually put the ramp down or tie me down, I do it automatically.  We had to rent a vehicle while we decided what we were going to do after the accident that we were in.   My 2000 model was totaled.  If this 2015 lasts as long as that one, I shouldn’t have to get another one.

Going to get off here and try to do something productive¡

Aug16

Day 290 (8/8/17)

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Good Morning Guys,

It’s another day and another infusion of Rituxin at Twin Rivers Cancer Center in Kennett. I know a lot has gone on since my last posting.  This will be my 4th infusion so only 1 more to go! Whoopee!!

Today has not started off very good since I think I might be on another rollercoaster ride. My knees aren’t bending very good today so Marty has been having to help me do this.  She has been such a dear friend and has been a great help to me and my parents.

Vitals:.  97.6 temp,. 117/76bp

Today August 14th, I am at the AMMC hospital in Paragould with Mom and Dad for him to get a port put in so he can start his chemo for lymphoma. I pointed to my curly hair and told him this is what he could look forward too.  He said he didn’t think he had enough to curl!  He has 6 months of treatment and as long as he comes thru who cares about curl or not!

Now for all that has happened:

On June 12th, went to my neurologist and he was very pleased with what functions I have regained!  He sent me to a physical therapy place to get fitted with a brace to go over my Bioness machine for my right knee. With this, I am slowly walking baby steps.

The end of June, I had bloodwork to check my thyroid and it came back on the low side.  They set me up for an ultrasound and a more thorough blood panel.  I have developed a goiter!  Whee!  I was told it was nothing to worry about but to do bloodwork every 6 weeks. One more thing to keep up with.

I started getting my revaccinations the 1st of July with polio and hepatitis B.  I get my last hep B shot in September and then no more until next year.  Oh, I will get a flu and pnuemonia shot each year in October.  My last polio shot or something made me sick that night and was a bad week from Tuesday to Saturday!

Can’t think of anything else to report on today, so just sitting here listening to Dad snore waiting until 11:00 for his procedure.

 

 

Jun7

My Symptoms Chart

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Hopefully this can be opened to show my changes good or bad.  I am using this chart that another HSCTer made and I revised with my symptoms.  I am reporting every three months instead of each month.  At the bottom of the chart explains the color coding.

MY SYMPTOMS-CHART