Cold Sunday Afternoon

Hello, Hello, Hello......
Well, like I said...it is cold..not cold, cold but for this time of year, it's cold. Unseasonably cold. My legs don't like it. Seriously, this weather has been bringing on some leg aches. It's been rainy and overcast also...what a crappy fall so far. No Indian summer at all.

Well, I've been keeping busy....I've been working with a guy that I met online that lives in Youngstown. He also has TM. Back in 2001 he started a website and a non profit organization that he uses to try and generate funds to channel to Dr. Kerr at Johns Hopkins hospital who is the head of the TM research program there. The guy I'm working with goes by the name of Gunny because he is a former Marine. Gunny is Dr. Kerr's cousin.
The website and the organization unfortunately never for into full swing but when Gunny and I got together we realized that the potential is there and we are going at things full bore now. We are running into some problems with the lady that was running the website though. She apparently got tired of running it and never made any changes that needed to be made and is now passing it off to some other company to run it. So, we're in limbo waiting to hear from these guys because we need some changes made. We want so bad just to take over the site ourselves and probably will as soon as we can get some things settled.
Anyway...the organization is the International Disability Coalition. The website is
http://www.disabilitycoalition.org/
and I will be the new Vice President as soon as we can get the changes to the site made.

I've also been playing around with making some business cards for my canes. I think I finally got something together that I like...
Take a look....


The last thing....I just started working with a woman online...she had an idea for a business. She has TM also. Her idea is to create an information website that covers virtually everything. Q & A, Medical advice from professionals, message boards etc...and then the site would exist on sold advertising.
She wants to launch on January 1 2010. Currently we are bringing on people to run the site, medical pro's, managers, etc...and initially we are all going to be volunteers but as things start rolling and we get the advertising going then we will be getting compensation. Now, her thoughts are that for those of us that are receiving SS or disability and don't want to mess that up, then the compensation will come in the form of gift cards. Sounds like a pretty smart plan to me.

So...that's about it for now.....except for a little music...
Something from a band called Moonalice.
A gathering of musicians the likes of G.E. Smith from the Saturday Night Live band fame.
Pete Sears from Jefferson Starship and Hot Tuna
John Molo from Bruce Hornsby and the Range and Jack Casady from Jefferson Airplane and Hot Tuna.
These guys have put together an interesting little band...


Till next time......

It's been awhile

since my last update. I updated on the 25th of August the last time and today is the 4th of October. I suppose that could be because of a couple of reasons...firstly, and I believe I've mentioned before that things have pretty much leveled off, or I guess I could say that I've become more used to everything. What I mean by that, is that I'm used to the day to day discomforts and pain and spasms. No sense in griping and complaining any more because it isn't going to do any good. I've learned to live with what I have and I'm moving on with everything.

Second reason for the lag in updates is that I just don't know what to update anymore.
I'll post what has happened lately....I met my new PCP doctor last month, pretty good guy. Seemed genuinely interested and concerned with my TM. We sat and discussed it for quite a long time. He wanted all the details starting from the moment it happened.
Another thing is that my migraine situation seems to have leveled off fairly well. I saw my migraine doc the other day and we went over everything. I still have slight ones on occasion but not near the level that they were...thank god... So I continue taking the Topamax at the same dosage I've been on. Seems to be working fairly well.
One thing..while I was talking with my migraine doc...he also specializes in pain, and we were talking about the nerve pain I have in my legs..and he asked me if I had ever tried Lidocaine patches before. Nope, I hadn't..So he gave me some samples.
I tried one that night and first of all, it didn't seem to do much to relieve the pain but here's the kicker....when I went to take it off in the morning...now imagine this...these patches are about 4" x 5" with some heavy duty sticky on one side. My skin on my legs is pretty sensitive already from the nerve sensations I have. I was in the bathroom getting ready to get in the shower and I was trying to peel this patch off...and first of all, it was pulling the hair on the back of my leg and second, pulling the patch off of my skin was like setting fire to my leg....it about brought me to tears...
So, needless to say, no more Lidocaine patches on my legs, thank you.

We're into October, the cooler weather is setting in, I can notice already that the cool is starting to bother my legs. I could always tell the slightest change in humidity in the warmer weather. It's amazing how the slightest changes in weather can affect things.

Well, I think that's all that I'm going to update for now. I have some other things to update on, that I've gotten involved in with the TM community but right now it's all in beginning stages...so maybe in a couple of weeks I'll post some more.

and for a little music post....
let's do some Crosby Stills and Nash....Long Time Gone.


Till Next Time......

A quick update

Just a quick update today.....
I got to meet my new neurologist yesterday. My last one (the one that I had since the onset of my TM left to head to southern Ohio to be near his grandkids) and he turned over most of his patients to this new neuro.
I had my reservations going in to this appointment, one reason was that he has a reputation of being against prescribing meds, especially pain meds. Now, don't get me wrong...I'm the worst pill taker there is but I will tell you....out of all the types of pain that I have ever had...nerve pain is by far the worst and when it flares up it certainly helps to have something to take the edge off...so I was prepared to state my case on that.
Second, even though he came highly recommended by my last neuro...(who I liked very much and was very highly respected in the medical community) I was kind of put off because I thought this new guy might be kind of *high and mighty* seeing as he was a Harvard Medical School grad.

Well, fortunately for he and I, I liked him. He was friendly, he was genuinely interested in my specific situation and when we addressed the pain concern he was more than happy to help out with the pain meds....even the nurses there at the office were surprised...
I take that as he totally understands the type of pain that I am experiencing and that it needs to be addressed.
So, that did take a load off as far as that goes.

It's interesting...my wife and I were talking yesterday....just in the last year...
as far as our doctors....I have had to change neurologists, we have had to change our family doctor twice...once because the doc we've had for years changed insurance carriers...then our second doc left the practice to go somewhere else.
I've also had to change my primary doc at the VA because the one I had, retired and we also had to change the pharmacist that we had been using for quite some time.
Kind of makes you feel like an orphan.....

Well, I think that's about it for now.....that brings us up to date with the most recent happenings....

Let's close with this selection from Leon Russell...I happened across this video the other day..a very stripped down version of "A Song For You" ...just Leon and his piano from 1971...this is about as soulful as it gets...


Till Next Time......