"Life"...........just trying to make the right moves

Well hopefully everyone had a good 4th of July 

The family and I were on vacation the last week of June.  We traveled down to Salt Lake City for “Mormon Mania II” (a visit w/ Julie’s cousins).  We timed it just perfect……when we arrived in Utah they had just had their hottest day of the year so far (94 deg.) I think one of the days we were there it was 88 deg.  The rest of the time it averaged 92 – 97deg. 

Still wouldn't want to be let out here........

MS people like me love the heat……..NOT!!!!!!! 

Actually…..I did very well compared to just one year earlier when the family and I were in Israel with very similar temperatures. 

Last year in Israel my activities were limited to a tiny air conditioned hotel room, the lobby and assistance in and out of the hotel pool.  We only ventured out once in the 8 – 9 days we were there to site-see and on that particular day……I spent most of my time in a wheelchair. 

Utah this year was much different. Everyday I went along with everyone and although we brought the wheelchair……..we never used it.  The heat this year did not totally wipe me out and I was fine on most days. No long naps half the day this year from heat fatigue.  I kept up with everyone and to top it all off……the air conditioner in the house we were staying was broken.  The house was very warm all day/night long and I did OK.  Little did people know…….this was a huge test for me and I passed! 

The difference -Stem Cell…….

  

…..nothing more/nothing less. 

  

People returning from Slavin’s stem cell protocol in Israel have all commented on how the MS fatigue has lessened in a big way for them. Giving them their quality of life back.  I have reported on this for months now.  And now…after this last vacation……I can honestly say that my:

Heat intolerance has greatly improved!

I’m also seeing a difference here at work….the shop is also not air conditioned.  It was 94 – 98 here in Seattle this last week.  I missed no work due to heat and I also have not used my cooling vest yet this summer……no need for the vest……this is another huge MS win for me.

  

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Thank you Danny, Kelly, the kids, and the hundreds (just kidding) of other Tilby clan that welcomed us to their beautiful homes and city. 

The kids and I had a great time and I promise to educate my wife in the art of getting out of her street clothes and into a bathing suit before attempting to ride a “jet-ski”. 

……I know, I know..the thing wasn’t supposed to tip over……right? 

Good times…….Much love to all of you…..and I’ll start thinking Lake Powell 2012. 

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Lately, I have been seriously busy at work…….we have a new plane (747-8)……and the shop has been getting a ton of new work packages that we have not seen before.  Good to be busy at work again, good for the income…….but bad for updating blogs and communicating with people. Sorry bout the lack of recent updates. 

I’ve also been: 

Appealing property taxes 

Submitting insurance claims for Lokomat 

Finding a new auto and home insurance group 

Trying to balance the “Small” budget while working 7 days a week. 

I did get outside and enjoyed some yard work with Julie and the kids the last few weeks.  The place is starting to look pretty good.  But always something to do with the never ending remodel. 

My working out schedule has been put on hold for a while.  I plan to return to “Pushing Boundaries/Lokomat in September or October but I also need to find some funding first……I’ll just add that to the never-ending “to do” list 

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I have been stretching a ton lately. About 2-3 hours a day. This is almost a workout in itself with the effort that goes into it.   The “good spasms” continue. Spasms that simulate mobility needs that I currently cannot achieve on my own.  These spasms make me very hopefully that I may be slowly seeing some nerve regeneration in these areas.  Mobility is definitely not lost in these areas as I had once thought just a year ago. Very exciting but also frustrating at the same time.  Spasms such as these have robbed me occasionally of some sleep but some hard stretching to the area can usually settle things down.  

Eventually some spasm episodes do not subside after lengthy attempts at stretching so I do have to reach for the Baclofen.  I have been on that drug for so long that many of my “good spasm” attacks that I get while trying to sleep can be associated to withdrawal from the drug as defined in the “Wiki” piece here: 

http://en.wikipedia.org/wiki/Baclofen

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the site partially reads:

“Baclofen Withdrawal syndrome

Discontinuation of baclofen can be associated with a withdrawal syndrome which resembles benzodiazepine withdrawal and alcohol withdrawal. Withdrawal symptoms are more likely if baclofen is used for long periods of time (more than a couple of months) and can occur from low or high doses. The severity of baclofen withdrawal depends on the rate at which baclofen is discontinued. Thus to minimise baclofen withdrawal symptoms the dose should be tapered down slowly when discontinuing baclofen therapy. Abrupt withdrawal is most likely to result in severe withdrawal symptoms. Acute withdrawal symptoms can be stopped by recommencing baclofen.[16] 

Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, inattention, memory impairments, perceptual disturbances, anxiety, depersonalization, hypertonia, hyperthermia, formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia, extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity.[16][17]

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I sort of feel like a “Junkie” reading that but the fact remains……..I’ve taken Baclofen now for 12 years…some years ,  high doses. To stop dosing all together, like I have been trying…… may not  be in my best interest. Stem Cell has made my body reaction more sensitive to the medications I take. No longer do I need the high doses of Baclofen to control things. Now just 10 – 20mg/day.  Many days  I have taken no Baclofen at all and got away with just stretching out good. This is where I want to be w/ this drug.  I have said before that I believe this drug inhibits nerve conduction.  

Baclofen has never helped w/ the leg stiffness(not spasm) issue that I have had for some time.  I am now taking 4mg of Tizanadine (4mg/day) to hopefully help with that.  So far I have seen a little help w/the stiffness. The drug does make me sleepy so when I dose at night it is hard to guage the effect.  It’s still early. I’ll keep reporting my results w/ this drug as more time passes. 

 Tysabri is tomorrow and I’m ready.  The “TY tank” feels a little low.  It’s been a hard month of heat and travel. I usually get a “pick me up” right after my monthly “TY tank top off”. 

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Handling it

 All in all……..It’s great to have some of my life back.  Gone is the everyday burden of the disease.  Yes…I’ve been slacking at the workouts cause I’m currently up to my ass in paperwork. A necessary evil we all get stuck with every once in a while.  I’ll get through this paperwork nightmare shortly and get back to my workouts I just thought that since it was hot outside I’d sit down and try to balance the federal deficit which is similar to the Small’s budget…..Good luck w/ that one Todd……LOL 

In the last six months (post stem cell)…..I’ve been getting back to my old ways….family life and futures planning. 

“Life’s chess match”…..so to speak. 

 

Kind of like a normal…Non-MS person. It’s a nice feeling not to worry bout health stuff……A very, very nice feeling. 

Remember…….we all have our crosses to bear……some are just a little heavier physically. 

 No worries right now. I got this.  

Be Well, 

Todd

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