1st Post

[Broken down Cowboy]

Hello, Guess it's better to get right to it. I was diagnosed at the Barrow Clinic in Phoenix, with ALS in December 2014. The extra sad news for me was that I'd been told, that my mild stroke like symptoms (slurred speech and left leg weakness) which had begun about for months earlier were due to a reaction I'd had to Crestor. Up June of 14' I'd been healthy as an ox all my life. After being on Crestor for only a few days I started muscle cramps. I quit it after 3 weeks, but my symptoms never left, and slowly worsened. I'd been under the care of a neurologist in Montana who kept telling me I'd improve with steroids. As I worsened he suggested a second opinion......That lead me to Phoenix, and my death sentence.

I'm not looking for sympathy. I think I've had enough time since December to rationalize what has happened to me. At 67, I can truly say that I've had a great life. It's when I read about young folks with their whole lives ahead of them beat down with this mind boggling diagnosis, that my heart bleeds. But, it also bleeds for my wonderful wife, who not only will be tasked with the responsibility of my care, but be deprived of the twenty or more years of love together during our healthy retirement we both had planned on and worked so hard to enjoy.

I've six kids who have already rallied around me to the point I feel humbled. Their spread out all over the country now, but my oldest son as rented a 12 room house in the Seattle area where everyone will gather for a week in June for our very first ever full family reunion.

I'm not speaking well at all and having some problems swallowing, but at least I'm still walking and moving around pretty good. I'm not riding horses anymore though. I can't see falling off and spending six months in traction.

I am a Christian, and a good one. We've been members of our church all our married lives. It's the only thing, other then the love and support of my family that is keeping my head together now a days. I figure God's got a plan much bigger then my own and this mess must be part of it. I thank him for the wonderful gifts of my life and am stepping forward in faith. I'll try to represent a good example for those who know me, as a man of faith facing a bitter enemy.

I've also told the folks down at the Barrow clinic that I'd be willing to volunteer for anything they'd ask me to do in the way of clinical trials...which might someday help the legions of humans someday, yet to be diagnosed with this hideous, disease.

Last thing I'd like to say is that I'm happy I discovered this forum and I'm sure I'll be spending a lot of time here from now on. Ranch work isn't in my future, spending some time in front of this keyboard hopefully will take up some slack. I'd like to think maybe, that as time goes on, my input to this forum may be of help to fellow members.

God bless us all.

 

[Atsugi]

Thanks for those beautiful and wise words, Cowboy. And I'm sorry you had to join us. You're welcome here.

I know that you're worried about your survivors. I do have something to say that might be helpful. For perspective, I'm the husband/widower of an ALS patient. My wife died of ALS nearly four years ago. I know what it is like to live on and raise children after an ALS patient has died. Several of us on this board are widowed. We continue to contribute. We continue to live. Eventually, the sadness is no longer overwhelming and life goes on for the family.

Are you a vet? It makes a big difference.

 

[swalker]

Hi Cowboy,

So sorry to have to welcome you here. You will find it to be a wealth of support and knowledge. It has certainly been of great help to me.

I will keep you and your family in my prayers.

Steve

 

[Nikki J]

Hi Cowboy. Sorry you are here but you are very welcome. Have a read through the stickies if you have not already. They were written by members with personal experience of their topic. I hope you have a good ALS clinic now? Are you still going to Barrow? They are great and doing some good research. Dr Bowser the researcher is awesome. Thank you for being willing to volunteer. Have you done the ALS registry yet?
Are you on Nuedexta? A couple of members have found it helps swallowing. It is for emotional lability so you probably have to report that to get insurance to pay

 

[MaxEidswick]

>Thanks for those beautiful and wise words, Cowboy. And I'm sorry you had to join us. You're welcome here.

Ditto that!



Max - Sunday, April 26, 2015 10:46:13 AM

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


.

 

[bigmark1954]

Hey Cowboy......welcome to our nightmare. Sounds like you are very loved, and have your faith for reinforcement.
We are all so different in how this curse manifests, yet the similarities are uncanny.
My 3 kids are all in their 30's, and don't seem to have time for me, or even offer to help with anything. I guess what Harry Chafen sang way back when is true, "Cats in the cradle."

 

[Green Queen]

G'day from Western Australia. I'm quite new at this too, still waiting for a final diagnosis but a variant of PLS is on the cards.
May the love and support of your family and everyone here ain this family keep you strong. May our God continue to hold you in His loving arms.
God bless, Janelle x

 

[lgelb]

Welcome to the dubious honor of our club, Cowboy. Y'all will have a great week in Seattle. If you or anyone in your family would like to chat then, feel free to contact me. Our son in his 30s and I cared for my husband w/ ALS for 5y.

Best,
Laurie

 

[Broken down Cowboy]

Howdy, Just got back from church and surprised at your responses. Thanks. One thing I can already see....a member here never has to feel all alone. That's great. Another thing I've learned is that I don't know enough about this disease to fill a tea cup. I'm sure I'll be doing a lot of research in the weeks to come.

Thanks in advance for any suggestions and input.

Luckily for me, my wife is a retired registered nurse and besides being a true professional...shes' also a brave little gal. My fondest prayer is that this won't be too much for her.

Thanks again

 

[Clearwater AL]

Sorry to read of your diagnosis. For being a Broken Down Cowboy at 67 years old I must compliment on your writing, typing, vocabulary and composition skills. As Nikki wrote previously, be sure and read the all Stickies. They are very helpful.

 

[cheerleader]

Dear Cowboy, tacking on to Mike's comments, as a surviving spouse it was my privilege to stand by my husband 's side during this journey- have no regrets because the two years after diagnosis were beautiful, loving years- probably the best of our marriage since we realized what really mattered in life!
There are still so many ways you can continue taking care of her- getting all your affairs in order as a starter. So don't stress over what your wife is losing ( and it is a tremendous, daily heartbreaking pain but...) but put your energy into today and living it to the fullest. Sounds like you already know how to do that! Please invite your wife to join us here. These people, their couragage, humor, knowledge, got me through the roughest days knowing we weren't alone.
Hugs to you and your family. Donna

 

[gooseberry]

Cowboy, welcome to our family. We are always here for you. Steph

 

[Nuts]

Hi Cowboy, and welcome. It always seems strange to welcome someone to an ALS support group, but if you qualify for membership you couldn't find a better one. You are right--there is always someone awake and the coffe (or adult beverage over the the pub) is always on.

Donna is so right about the things you can do for your wife and for yourself. Get your affairs in order, and then live life as fully as you possibly can while you can. As difficult as I know it must be, you are wise to have given up riding. I can already tell that you have a lucky wife (Mark, that's not to say your wife isn't lucky to have you--just maybe for different reasons )

Many PALS fight the power chair, and I understand why, but it does restore great freedom and allows you to get back to the business of living instead of being cooped up inside. It can take 4 months or more to get the power chair, so please start the process well before you need it. Since you've already given up the horses, I suspect that you will get started on the chair without too much prodding.

In the meantime, welcome to the forum. No voices required here!

 

[anderkling]

Thank-you for sharing so beautifully about your life, your outlook, your faith. It is a wonderful gift to be surrounded by family who love and care for you. We are on a difficult journey, but God does give the grace we need day by day. He helps us and blesses those with peace who trust Him. Welcome to the forum. It's good you plan to stay a while. I look forward to getting to know you better.
- Charlene

 

[Broken down Cowboy]

Dear Cowboy, tacking on to Mike's comments, as a surviving spouse it was my privilege to stand by my husband 's side during this journey- have no regrets because the two years after diagnosis were beautiful, loving years- probably the best of our marriage since we realized what really mattered in life!
There are still so many ways you can continue taking care of her- getting all your affairs in order as a starter. So don't stress over what your wife is losing ( and it is a tremendous, daily heartbreaking pain but...) but put your energy into today and living it to the fullest. Sounds like you already know how to do that! Please invite your wife to join us here. These people, their couragage, humor, knowledge, got me through the roughest days knowing we weren't alone.
Hugs to you and your family. Donna

Wonderful advice. I've already begun working (while I still can) in preparation for my end. Since I'm a hands on kind of guy, believe it or not, last week I got done making my own cowboy style pine box. My little wife liked it so much, she asked me to make her one. After I made her promise she wouldn't use it for thirty years....to please her, I did. Their both up in the barn tarped up right now. I'll be heading into town with the GPS coordinates for our new private burial plot here on the ranch. That's where I'll be laid to rest. My funeral will be green....no funeral homes and embalming fluid for this ol' cow poke.

My pension as a deputy sheriff will continue after my death and will supply my lady with enough $$$ for all her needs and then some. But worrying about her alone out here was still a big concern for me as she gets more fragile as years pass. This problem has been remedied. We're cutting off a thirty acre piece of land out near our gate that one of our boys will build a house on. He'll be there from now on to help Momma with the odds and ends keeping up a place like this requires. Heck, just cutting wood is a big chore...she'll need 10 cords for the winter. Getting the hay in, shoeing the horses...plenty of hard man style work to do. I've complete confidence the lad will stand the test. Right now he's working the oil fields in North Dakota, but thank God, he's willing to head on back and find work around here to allow this thing to happen.

We are doing our best to keep living every second to the fullest. One of the things I've been concentrating on is to protect my wife's mind by not verbalizing most of my negative thoughts. I can see no sense in sharing my dismay realizing that my muscles are quitting me more and more on an almost daily basis, when I cry, it's normally alone.

There's a trip to the lawyer coming up soon to make out a good will.

Oh, and besides being the official breakfast cook....I've insisted on being the full time dishwasher...which she has reluctantly agreed to. (No fancy automatic machine on this ranch, it's a double sink and elbow grease around here). So, for as long as possible I got that job security going for me!

Well, thank you, and the others on this unique place for the kind words and Prayers, I'm sure happy I found this spot. Glenn