Thursday, August 28, 2008

Thursday update

I didn't go to water therapy yesterday...After talking with my Therapist and my Neuro..we all came to the decision to change my water days to Friday and shorten the time to about 15 - 20 minutes. We're changing the day to Friday so that I am not so wore out on my regular Thursday therapy session and also shortening my time so that I don't get so wore out between the exercise and also the water temp.

Well, I did go for the foot drop stim thing today...I first had to go in to PT for my regular re-eval. I am gaining some strength back. Chris the therapist that evals my progress told me that with some of the movements I had gained and with a couple of the other movements I had no progress... So, again, it is a very slow process but I am making some progress..
The stim demonstration was interesting..there were three of us that were the "crash test dummies"

The first lady, somewhat elderly, had suffered a stroke quite some time ago from what I gather..she said she hadn't been able to walk in two years.. Well, she got hooked up to the unit and lo and behold..she was up and walking.. she was so happy and amazed. She was able to get around pretty well with the help of a cane and her therapist assisting her.

Next, it was my turn. The guy that was doing the demo's first wanted to test me to see if I the unit would be able to make my leg muscles "fire" with the electrical stim. At first, it was hard to handle the jolt of the stim..and he was turning the machine up pretty high because I wasn't having much foot and toe movement. He kept trying but there just wasn't much there. With how high he had to turn the machine up I felt like I had electricity shooting out of my toes..it was really weird.

Anyway, he unhooked me and told me to sit and relax for a bit while he had the other lady go through the demo. She was also another stroke patient..and she also had good luck with her demo. She was up and walking very well.

After she was done I got hooked up again. This time he said he wanted to go through and set me up all the way and at least see if it would help me walk at all. So, I got wired up...and stood up and started walking. As I walked he would ask me if I could stand him turning the machine up higher. I told him to go for it.. It seemd that I was able to stand the electrical charge better while I was walking because I was focusing on walking not the stim. So anyway, even with the stim..I still had barely any foot movement at all..my left foot was still slapping down as I walked. As I was getting unwired..the guy told me that he only had a couple of more millivolts left to turn it up until the machine was maxxed out..so I guess...no bananas for me today... It didn't work. Oh well. Maybe sometime down the road.

As I was finishing up there...my therapist came over and told me that the lady that is in the hospital now with TM had come in for her PT session and wanted to know if I would talk to her for a minute. So we were introduced..Her name is Laura and she was very nice..she is totally paralyzed from the waist down. My wife and I chatted with her for awhile..she said that she is going to be there in the hospital until the 21st of next month and has been there since the 14th of July.
We are going to visit with her again this coming Thursday when I go in for my PT session again. I told her I will gather together some information for her and hook her up with a bunch of the websites for her to read.

She seemed sincerely glad to have spoken to me and maybe now not "so alone" with this rare disorder.
So, that was my day today..
Water therapy tomorrow...maybe another update then..
Till next time.

Monday, August 25, 2008

Monday update


and I have a few things to update about. First, I had PT today..things are still going well with that... when I got there today the two therapists that normally work with me asked me if I would like to be a guinea pig for something..apparently on Thursday someone is coming in to give a demonstration on a foot drop electrical stim unit and they are looking for eligible patients to demo it on. I said sure...I'm all for it to see if it works.. So Cindie my therapist hooked me up real quick to their stim unit to see if my leg was even stimulatable..(<--is that even a word..??) Well, I had a little muscle movement when she did that so I may be a good candidate for this thing..that is, if I can figure out a way to get insurance to pay for it.. Anyway...we'll see about this..I am curious though, I want to see how this thing works. If it works then I'll start looking at insurance coverage.

Also, talked to my therapist about my exhaustion level at water therapy.. and I told her that I would also talk to me Neuro about it since I also had an appt. with him today.. I may have to reevaluate my water therapy for now.. hmm..
So, that was PT..
I also had my follow up with my Neuro today...had a nice list of questions for him...
one of which was the water therapy.. he says to either try just shortening my therapy to maybe 15 - 20 minutes to see how I do and if I am still exhausted because of the temp of the water then I may have to stop water therapy for now.. bummer.. or possibly changing my water therapy day also.
He says the electrical stim thing sounds fine...see what it does..it can't hurt.
He is having me go for another MRI..it has been just over three months..by the time of the MRI it will be 4 months since the TM started..this well show him if there are any new lesions or anything that he may need to be concerned about.
Also going to have another ultrasound done on my left leg..he wants to make sure that knot in my calf isn't a blood clot and I also have to have a urine culture done to see if I have any infection because of the fever issues I have been having.
Otherwise..he was happy with the way I am getting around with the cane..and he said he was very confident that I will at some point be able to walk on my own.. that was very good to hear.
So, that's about it for now.. I have water therapy Wednesday so I'll probably update again then.
Take care everyone...
Till next time...

Friday, August 22, 2008

Friday

update..where do I start..??
Well, I guess I'll start back from my last update which was Wednesday after Water Therapy.
I had my regular PT yesterday..it went well..pretty exhaustive as usual..but after talking to my therapist (she was asking me about my water therapy and how it was going and how I felt about my exertion level afterward) she seems to think that I may be overdoing it. I have to admit..I am pretty whipped afterward..If anyone of you has ever done anything really physically strenuous to the point of complete exhaustion afterward, that is how I am feeling.

So, I may have to be reevaluated with what I am going to be doing in water therapy...and also possibly going to a different pool where the water is not as warm. Reason being, even though the water temp feels nice..with this TM..my internal thermostat is out of whack.. The temp of the water has alot to do with my feeling of exertion. The warmer the water the more strenuous it is to me, is what they are thinking. So.. I'll have to see.

Now, the next thing...Back in June I applied for SS Disability..figuring that I knew it is going to take some time for me to recover to a point where I may be able to go back to work to some degree. I knew that getting a determination from SS usually takes some time and I also knew that in most cases SS denies a persons first request and you have to file an appeal. I was prepared for all of that.

Even though I didn't want to admit to myself that I was "disabled" I know that I have to allow myself the opportunity to recover both physically and mentally before I am going to be truly ready to be go back to work and hopefully I will be able to some day..
Well, yesterday I got a letter from Disability.. I am approved...
I have very mixed feelings now... yes, I am glad that I didn't have to go through all of the appeals and such... To know that my condition is such that they approved it first time really sends home the seriousness of TM to me...
But now..It also really sends home the fact that I am "Disabled"...that is a term that I am having some problems with.

Man...not a day goes by where I don't sit and think about the mental roller coaster that this is...Some days I wish I just lived on an island away from everything and didn't have to worry about any of this....

Anyway, I have a follow up appt. with my Neuro on Monday... Got another whole list of questions for him... Unless something really exciting happens this weekend... I'll probably hold off on updating again until Monday after my follow up..
so...until next time..

Wednesday, August 20, 2008

Had water therapy again today

and this time my therapist, Chris, extended it by an additional 15 minutes...
Needless to say..I was pretty wiped out..I got home and came up and laid down for a while..and ended up taking almost a 3 hour nap... :-) Whew...
That's all for now...I'm still wore out...
Until next time...

Tuesday, August 19, 2008

A quick update tonight

since I haven't written in a few days.
Well, lets see...I wrote on Thursday and since then..I had another fever on Sunday...came on out of the blue..I didn't feel great on Saturday but not terrible..and then Sunday afternoon I fell asleep and when I woke up I felt like crap..I could tell I had a fever and I had a miserable headache and I was all achy.
So anyway, I called off of PT on Monday. I did feel better..no fever but still had the headache and the achiness.
Today I felt better..so whatever it was..it came and left.. The only thing today though..is that I did have to get up at 3:30am to go to the bathroom and then I came back to bed and my legs were bothering me so I tossed and turned for two hours and then finally decided to just get up for a bit. I got downstairs and made some coffee and sat for a bit.. of course with all my tossing and turning I woke my wife up so next thing I know she is up also.. after I had some coffee I went back to bed for awhile and watched TV.
At 11:45 we left for an initial appointment with the local VA outpatient clinic. Lately we have found out that if we enroll at the local VA facility we can get alot of the things I need for free..alot of my medical supplies like catheters and even a wheelchair. I have a wheelchair now but I am renting it. So, it was a 4 hour plus appointment because we met with the nurse, the doc, had an ekg, went to the lab and had blood drawn, had an x-ray and talked to the pharmacy about medical supplies..it was a long day but I think it will be worthwhile.
Anyway, that's about all for now..I have water therapy tomorrow so I will probably update again after that.

Thursday, August 14, 2008

Today

is my 3 month anniversary of being admitted to the hospital and being diagnosed with TM. Wow..Happy Anniversary to me..

The last 3 months have been interesting to say the least..I look back at my first few days in the hospital and realizing that my entire life had just changed.. Getting to the bathroom was a chore even using a walker. I was in constant severe pain and the doctors were constantly coming in and checking my feet, my legs, my backside etc...to see where I had feeling and how much muscle strength I had..(which was almost totally non-existent)

At the time I really didn't realize how much fatigue would also go along with this because I was in bed all the time.. and on a steady diet of pain meds.. So I slept alot.

During all of the time in the hospital I knew that I was going to have to adapt to doing alot of things differently than I had before..simple things like rolling over in bed or even just getting out of bed. The simple basic things that we all take for granted were now a challenge.

Now, with the help of physical therapy I can walk with a cane..(although somewhat unstable sometimes because of the lack of balance still). I have regained some muscle strength in my legs and I have learned how to self catheter myself and have some sense of bowel control (although minimal at times). The pain is under control through the use of a couple of different pain meds and muscle relaxers which is also helping me with my physical therapy but also make me very tired all the time. The constant ache in my left leg is still there but under control to the point where I almost forget about it sometimes thanks to the pain meds :-)

I guess physically I have learned to adapt to quite a few different things now.. but one thing that I am still having serious issues with is the fatigue.. In physical therapy my therapist usually has me take a walk down the hall first thing since I am "fresh" and I probably get to about 75 feet and I have to turn around. By the time I get back to the exercise room I am tired out..and then doing three minutes at 1 MPH on the treadmill and I am sweating. I get to the exhausted stage and my left foot starts dragging and my left hip doesn't work right..my gait is totally screwed up because I am trying to compensate because of the tiredness.

I also find that stress is becoming a factor that makes me more tired also. It seems that I am finding that some of the physical stuff I can adapt to and I am making minor progress with it which I am happy about, but now I feel that some of the mental issues are more prevalent than they were at the beginning. It only goes without saying because before TM hit I was a gainfully employed person that enjoyed what he did and I was able to do things around the house that I enjoyed..(cutting the grass, working in the yard, little projects around the house such as simple things like changing a light bulb in the kitchen ceiling light) that I can't do at this time. Maybe in time I might be able to but right now I can't and it bothers me alot.

I am now unemployed and unsure of what my employability chances even are anymore..after all I'm a 50 year old disabled guy and even if I were to go to work my doc says I need to be in a wheel chair and can only do part time. Now, I do physical therapy three times a week and I am exhausted after that so where does that leave me for availability..? I need to find something I can do from home I suppose..
Anyone have any ideas..?
Well, I suppose that's enough for now...the weather is picking up outside..It's thundering..maybe I'll go watch the rain for awhile..
Till next time..

Wednesday, August 13, 2008

Holy Shite....

I am exhausted...
I did my first session of water therapy today..only a half an hour...and it felt really good while I was in the water...

At the end of the session as I was heading toward the steps to get out of the water..the therapist told me to be very careful and go very slow because with each step out you will feel heavier and realize how tired you are.. So, I'm thinking okay...how bad can this be..

Well, let me tell you..with each step out of the pool I felt like my legs weighed 100 lbs apiece and she was right..as soon as I got all the way out of the pool it was like..OMG...did I just run a marathon..??

On the way home my wife had to stop at the store to pick up some things..so I sat in the car..and within 5 minutes I was asleep...

So, I figured I'd do a quick update and then relax for the rest of the evening... sweet dreams.. :-)
Until next time...

Tuesday, August 12, 2008

HAH...........


I took my first tumble today since I got TM. I got up this morning about 6:45 because my Sophie dog needed to go out to potty..

So, I let her outside and I went out on the deck with her..it was really nice out this morning.
Well, I stood on the deck while she wandered around the yard for a couple of minutes and then there was a loud kind of a hammering noise that came from somewhere in the neighborhood and she does not like loud noises so she high tailed it back to the door..

Well, I wanted her to go pee before I let her back in so I hobbled out into the grass in the back yard..I was walking around a bit calling her to come out.. As I was walking I was watching her and not where I was going. I stepped with my left foot into a bit of a divot in the yard by the deck from where I took out a bush last year.

Since I don't have any strength in my left ankle at all, it immediately gave out and since I also have no balance I went right down. Luckily I was very near the deck so as I was going down I just kind of turned my body so that I landed on my left hip and also stopped myself with my hands.. I sustained no damage at all..it was just a bit of a surprise and I also kind of embarrassed myself, even though I don't think anyone saw me. I got right back up on my feet and finished walking around to make sure all was well.
Anyway, Sophie never peed...she stood there and watched me wagging her tail.. geez..

Monday, August 11, 2008

Six days

since I posted..why so long..?
Well, last week sucked..I mentioned in my last post about not feeling so well so I spent alot of time sleeping and resting.. I didn't even go to any of my physical therapy sessions. By Friday I felt better but there really wasn't anything new to post about..so I figured I'd wait until today since I had physical therapy today. It went well..Did the same exercises but also spent some time on the treadmill..managed 3 and a half minutes before I was wiped out..

I was supposed to start Water Therapy last Wednesday but as I said..I didn't go to any of my therapies so this coming Wednesday will be my first time..I'm pretty anxious to get started with it.

I have been having some trouble with my left calf..the muscle is real tight..it is all knotted up..so water therapy should help me get that worked out..I do have some stretches that I've been doing but it isn't helping yet..

Not much else this time around...
Till next time..

Tuesday, August 5, 2008

Tuesday Evening

and it has been a tough last couple of days.. I know in my last post I was so thoroughly upset and disgusted with things. Well, the last couple of days have been "problematic" also and I'm still not sure if I am just recovering from Saturdays excursion to the parade or if I have a bug because my stomach has not been quite right at all since Sunday.

I have had to relegate myself back to wearing diapers which has proved a good decision twice today. This morning I felt a bit better but still had a very small headache. I woke up last night at 2:30am to go pee and then I also had to get up again at 6:00 this morning to go pee again. That was unusual but it could be the fact that I have been trying to drink more liquid so I don't dehydrate.

Since I have this blog set up to automatically post to the Yahoo TM group I have had alot of responses to my posts and alot of encouragement which I appreciate. Thanks all you folks..!!
It is nice to have others out there that are understanding of the "evils" of having TM although it is a shame that we have to be brought together under the circumstances that we have.

I feel that even though my wife is very supportive and understanding of my "situation" (and I truly appreciate her for everything) if I had not found the good folks on the message board of the Transverse Myelitis Association and the folks on the Yahoo group this could have been much more unbearable than it is.

I'm sure I'll have more rants in the future because everyday is a different roller coaster ride. I typically like roller coasters but this ride sucks..
Till next time...

Sunday, August 3, 2008

It's Official

I am so friggen disgusted of this thing called TM... I'll explain in a minute..
I'll revert back to Friday...Friday I didn't feel well..had a headache and just felt overall rundown..I didn't even shower...We had been making plans to go to the NFL Hall of Fame parade Saturday morning and my wife asked me if I was still going to go..I told her I wanted to..

So..Saturday morning.. I felt..okay..not great but I wanted to go to the parade.. We woke up early Saturday morning and I felt fair.. We left the house just after 7:00am and got to the parade area about 7:30..I had my wheelchair so I was comfortable and we found a nice spot to watch the parade..the parade started and it was nice..people got so excited to see some of the inductees and there was a nice showing of Army there and the Marines had their Drum and Bugle Corp there so I enjoyed that..It was very patriotic..

The parade finished about 11:00 and we got back home about 11:30 or so and I was exhausted and so hot.. As soon as we got home I came upstairs to bed and laid down, my wife brought me a sandwich to eat and I watched TV for a short while and soon was asleep..I woke up at 5:30pm..and felt terrible. I figured I had just overdone my day by going to the parade and being in the sun..but my wife felt my head and I was burning up.. Took my temp and it was just over 100.. I figured then that I might be coming down with a flu or something..I wasn't sure..

Last night was a terrible night..I slept awful.. I had the most bizarre dreams and I was sweating all night..if you remember, I had gotten the blow up mattress for the bed for when I had the bed sore..and I've been sleeping on it because it is comfortable..but it is vinyl..and it is under the bottom sheet..and when I woke up I was drenched...

So, now to today..feeling pretty crappy today..no fever though..headache all day..and so tired..
All this is bad enough with having TM..it is so frustrating and just pisses me off...but to top it off..
I had another friggen bowel accident today... that is so goddamn degrading and embarrassing that I can't even explain..
I don't even know where this came from..I had a bowel movement earlier today and everything was fine..and I'm laying here on the bed watching a movie with my wife and the next thing I know..I have the "feeling" and it was too late..
I am so disgusted...and frustrated and I don't know what...
Till next time..