New member

[notBrad]

Well, went to see Dr. Goslin at the Providence ALS clinic in Portland and she confirmed ALS. They're running about a dozen "hail mary" blood tests for things like Lupus, heavy metal poisoning, auto-immune issues and so on but at this point it seems to be pretty well confirmed. Unless one of them shows something they want to start me on riluzole ASAP.

Good news is I got a diagnosis early (~6 months into symptoms) and as of now still fully functional just the hand weakness, fasciculations and no speech issues other than occasional disarthria (almost exclusively velopharyngeal dysfunction) when I'm tired or stressed.

Took a barium swallow test and all was well, no aspiration just a very very small amount of weakness at the bottom of my tongue. I'll be seeing a speech therapist for exercises to aid with improving that next week.

Breathing capacity is excellent (near 100%) and they already wrote me a letter to allow me to claim disability immediately.

They're going to put me into a multi discipline clinic where every 90 days I spend 4 hours with 10 different specialists addressing a variety of things. This supposedly can add about a year to the survival time and also help delay onset of ventilation dependence and other issues. And of course they'll let me know about any trials coming up I may be a fit for.

All things considered I think that going for a second opinion would be a waste of time given the expertise I've had access to, the two dirty EMGs and the myriad other tests that have all come back negative. I could but not sure the delay versus potential for a different diagnosis is worth it.

 

[MaxEidswick]

>sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,



Max - Sunday, April 05, 2015 1:58:49 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Nikki J]

Very sorry. But welcome. You still have lots of living to do and it sounds like you are in good hands with your clinic. If you want a second opinion you can pursue it without delaying anything else. Just make an appointment and when it is time gather up your records and go. You do not have to switch your care unless you decide you like the second opinion better. No one is insulted and the top neuros in ALS all know each other any way
For now take a deep breath do look at the relevant stickies when you can. Start riluzole as soon as you can. All the indications are the sooner the better for it to have the most effect

 

[notBrad]

Thanks guys for the welcome, kind words and advice.

Yeah, it is definitely a roller coaster that's for sure. It is incredibly similar to last year when my youngest brother died unexpectedly. Just comes in waves, fine one minute then eh... not so much so the next. Sure it'll continue that way for a while.

Dr. Goslin mentioned the ALSUntangled site as a good one to visit and she also mentioned the Deanna Protocol which I've researched as well which puts them both on my good to go list.

Thanks for the advice about 2nd opinions Nikki - Dr. Goslin and her staff have impressed me beyond words with their skills and all other aspects of their treatment so I think I'll just dance with those what brung me BUT it's good to know there's not a interrupt in the event some other treatments, options, etc... come up.

I'm not one for "miracle cures" as I've always been of the opinion that if they actually worked news about them would be blasted all over the place (and to be honest, they'd probably have nicer looking web sites and not something that looks like it was done by someone's nephew).

My big goal is to stay on top of being as active as I can without over doing it, keep playing sports and working out as long as I can and then segue into other activities as I need to. And also to start the riluzole ASAP once the tests are back and start with the Deanna Protocol ASAP as well.

Anyway, thanks again and I look forward to conversing with you both for a long time to come.

Take care,
Brad

 

[lgelb]

Brad,
So sorry the cards fell as I thought. Sounds like Providence was actually the 2nd opinion but you can always go for a 3rd if/as progression doesn't match up. You are obviously a "doer," which will help you deal and problem-solve, throughout.

--Laurie

 

[ECpara]

Brad, so sorry you have officially moved over to "Newly Diagnosed". I've followed your posts on DIHALS and was hoping it wasn't to be. But welcome, you will find a wealth of information and helpful comrades on here. Blessings to you!

 

[notBrad]

Thanks Laurie and EC. Yeah it sucks but it is what it is and hopefully I have a slowly progressing version and coupled with the riluzole I can buy enough time for something better to happen with new discoveries, and worse case as my wife put it "I just got an excuse for an early retirement and also a good excuse to just go out and live my life without having to worry about making others I don't care about happy".

It could be worse. I could be sitting here with an inoperable brain tumor and 3 months to live... I have a friend on another forum who is 28 and I've "watched" her spend the last 2 years battling recurring cancers. She's had a mastectomy, gone through chemo, radiation, had tumors removed from her spine, stomach, back, you name it... This poor thing has been in constant pain and sickness for 2 years straight and yet still gets on the forum and posts and laughs and jokes with all of us.

I know there will be days when my life with ALS sucks but I'm not going to ignore the upside (and yes there is one, albeit the only one) of having a linear progressing disease. Once I know "where" I'm at and how "fast" I'm moving I should be able to get a good idea of when I'll need to transition to accommodate the various phases of debilitation and "live life" accordingly.

For now, every day I get to golf or play softball will be a treat, later it may be just walking the dogs, then it may be just watching them play or watching movies with Vicky (although I enjoy and do those all now). Eventually it may just be catching up on reading all the things I just can't justify taking the time to do now.

There's a future for me, it's not the one I would have preferred BUT I'm not dead yet and I refuse to allow anxiety/fear to get the best of me as per Max's excellent advice.

 

[ECpara]

Brad, what a great outlook! We had a physician's assistant from Duke tell us once that attitude can give you so much more time. She has seen it. She claimed the PALS that cried and moped and yelled "why me?" were the ones who progressed faster. My husband always kept his chin up, and even golfed for over three years with this disease. His prognosis was 1 to 3 years (bulbar onset), and here we are over 3 years since diagnosed (4 years later since onset of symptoms). Not to say that lately this disease hasn't gotten us both down quite a bit, but we have done a lot of laughing and living along the way. Now he's doing a lot of that movie watching you speak of thanks to Apple TV and Netflix, lol!

 

[affected]

I think it's a bit chicken or egg to say that PALS who progress fast are the ones that cry and mope 'why me'.

FACT - some PALS are rapid progression.

I've known very rapid progression PALS who maintained an amazing attitude (and I'm not talking about my Chris who was rapid progression and FTD).

Sorry to welcome you Brad, and your attitude is wonderful. It may or may not affect the speed of your progression, but it will definitely be the major contributing factor to your quality of life which is after all the most important thing any of us can have.

I don't want to impact on your attitude but ALS is not really a linear progressing disease. Progression can speed up and slow down and suddenly begin in new areas of the body and one cannot tell much in advance as to what is next though we try hard to anticipate to be ready.

You will find great support here as well as a wealth of knowledge.

 

[Nikki J]

I mostly agree with Tillie. I do think a bad attitude can speed things up negativity is never good and especially for us. but unfortunately I doubt a good attitude slow things down. But it certainly makes a difference in quality of life for you and those around you so keep it up. Interesting that your neuro endorses the DP who brought it up? You or her?

 

[hjlindley]

Welcome to the club no one wants to be a member of. My ALS started in my right hand in 2007. Probable diagnosis in 2009, and a definitive diagnosis in 2011. I'm in a power chair, but still breathing, swallowing, and talking up a storm. The only advice I can give you is to work closely with your ALS social worker so you can stay ahead of this disease. If anything comes on suddenly, it's probably something else. Don't blame everything on the ALS. We are all here to help you, so ask any questions you feel like. Since it started in my hands, my two best investments have been Dragon speak to dictate and the bidet seat for personal hygiene. Good luck, and we're here for you.
Hollister

 

[notBrad]

Thanks all for the welcome and advice.

While I don't think that a positive attitude can slow things down from a clinical outlook, I've played enough sports and done other performance base things (was a professional musician for years) that I do know it affects your ability to perform with what you have to work with. I think that's what EC is referring to. Someone with a lousy attitude may not be as clinically bad off but that attitude will certainly limit their ability perform to the optimum of what they're capable of versus someone with less ability but more determination.

Dr. Goslin didn't exactly endorse DP but she did bring it up when explaining to my wife and I about various things being tried by people to mitigate the effects of the disease. The feeling I got was that she felt it might be of some benefit and certainly couldn't hurt. She also mentioned ALSUntangled as a resource to consult about the various treatments out there. One of the other things she mentioned was to keep up my workouts and activity levels but not to overdo them which I don't do anyway.

One strange thing is that contrary to a lot of what I've read I do find things ebb and flow. I have never had and still don't have any non-functioning extremities, my speech has improved to almost pre-onset quality both in cadence and quality and I have days where I'm stronger than others. Whatever the reason for that I'll count my blessings and run with it as long as I can.

My biggest thing right now is to get the text generator I've been programming to a point where I can build libraries, etc... because that'll allow me to not only use it for TTS when the time comes but also to use it to program with so I can continue to be able to develop things and stay busy.

Thank you all again for the welcomes and thoughts/advice and I'm sure we'll talk in the future.

Take care,
Brad

p.s. hjlindley - I may get that bidet seat prior to even needing it just for general purposes...lol

 

[MaxEidswick]

>and talking up a storm



>the bidet seat for personal hygiene.

Ditto that!

 

[GregK]

nB, as your speech is currently good I suggest you jump on banking your voice, such as with Model Talker.

 

[notBrad]

nB, as your speech is currently good I suggest you jump on banking your voice, such as with Model Talker.

Good idea although to be honest given a choice I'd prefer a better sounding voice as mine has always sounded kinda mumbly and had a bad tonal quality... lol

Maybe I could get samples of Sam Elliot's voice and use them...