There has to be more, husband diagnosed recently

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cynwldkat

New member
Joined
Jan 18, 2013
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8
Reason
CALS
Diagnosis
12/2012
Country
US
State
NC
My husband was recently diagnosed with ALS and I am finding it hard to believe this disease has been around for so long and yet there is still nothing that really helps it. Like cancer and many other diseases I do not believe with all the money, brilliant minds and years involved nothing has been discovered better then the barbaric drug procedures they are pushing on us today! Really? We have gotten involved with the local ALS foundation--they are very nice people--nice is not going to help my husband! It's like they just want to keep a record of how he dies.....how this disease kills him--write it all down and put it in their records. Come on, I realize if any cures were found for ALS, cancer etc our country would go bankrupt, Dr's would be without jobs, hospitals would be in dept with all of that over-priced barbaric equipment but hey, we are talking about a human life. Often times it's babies--how can anyone feel ok with this? My husband is far from a baby or child but he deserves the right to be given a chance to survive this despicable disease! Are we suppose to believe that all they have is a few drugs, mostly drugs that only prolong a horrible death and at a unaffordable cost with side effects worse then the disease itself? Really? Real actual human beings actually push this stuff? Our big pharmas own us--our country--our government and I just cannot stop believing they are the ones calling the shots here. Has money really become that important in our country? aybe my husband is one of the lucky ones and he can finally go home where he can be at peace. :-(
 

ottawa girl

Very helpful member
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
Re: There has to be more.........

I am ever so sorry about your husband's recent diagnosis. It is catastrophic. No doubt about it. My family, friends and I also wonder why there is no cure, one hundred years since ALS was identified and named. My husband spent hours scouring the Internet for the latest information, until I asked him to stop and spend that time with me.

I believe the human body is so complex, and there is so much more scientists have yet to discover. Also, it's not surprising that a disease which affects such a small percentage of the population does not get top billing and/or investment. My neurologist opines a cure will likely be found inadvertently by scientists working on Parkinson's, which is better funded.

We try to focus on things we can control. I choose to see the best that each day has to offer. Otherwise, we would crack under the stresses this illness brings. Are there bad days? You betcha. But overall, I truly feel blessed. I have met the most wonderful people in the ALS community; people I would not have otherwise met. I have learned more about love and patience, than I ever thought possible.

Do I want a cure? Absolutely. I hope it happens fast enough for me. But ALS does not define me and I still have living to do.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
Re: There has to be more.........

All that big pharma can offer is one drug==Rilutek.It may increase life six months but is more expensive that gold. If you are this upset and angry at the beginning of his illness, I feel for you. Buck up! You have the trial of your life ahead of you. The nervous system is very complex and sooner or later researchers will find a cure. For now there is none. Everyone on this site has gone through the horror that you face. We all made it. Remember this too shall pass. Take care of yourself physically and mentally. Trust God to help you and live a day at time. Remember there are no set times for progression,death, or anything associated with ALS. It is a mystery and everyone has a different account.
 

WellsRuby

Distinguished member
Joined
Mar 16, 2012
Messages
186
Reason
Loved one DX
Diagnosis
03/2011
Country
US
State
Texas
Re: There has to be more.........

I understand the frusteration of not having a cure for ALS or more knowledge than we have at the moment but Elaine is right about cherishing what you have. I love it when my husband and I get caught up in the moment and it feels almost normal but it is not. I long for the days that I did not know about this disease. This is the hand we have been given and we take it day at a time and enjoy what we can. I hope for a cure soon.
 

lakelover

Active member
Joined
Sep 5, 2011
Messages
54
Reason
CALS
Diagnosis
08/2011
Country
US
State
NC
After my husband's diagnosis I to was very angry and frustrated over the lack of treatment. As his progression continues I try to make each and every day count and stay strong for him. I am sorry that you and your family are having to go down the path of ALS. This is not an easy path because you never know what this disease is going to do.

We are not far from you guys. We have a place at High Rock Lake in Denton.

Wanda
 

cynwldkat

New member
Joined
Jan 18, 2013
Messages
8
Reason
CALS
Diagnosis
12/2012
Country
US
State
NC
I do realize that each reply here is correct--and I appreciate the input. I suppose we all go through our own phases regarding any kind of situation like this. My first thought was saddness and fear and then I got angry. I understand anger does not help but it is not something we always have control over. I have lost so much trust...We went to Dr's for nearly a year before we finally found one that actually sent us to a neurologist which is what I had wanted from the beginning. We were told it was everything from kidney stones to COPD and yet my husband could barely talk, was losing strength in his hands and could not hold his head up because his neck muscles were so weak. We have only been to the ALS clinic in Charlotte one time--the day of the diagnosis and that was about a month ago so my husband who has the ALS and me are still going through all kinds of emotions. I try to keep my emotions inside as my husband surely does not need to see me down---I know each of you have gone through your own set of emotions and my heart goes out to you all. I think getting involved with the ALS support group will be very helpful. I have not checked into it yet--one thing at a time. Right now I'm just trying to remain strong, keep my faith and be here for my husband. Thank you all for responding to my post! It does help to know you are not alone.
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
We all go through that phase of being angry. The problem with treatment for ALS is that by medical definition, it is a syndrome with multiple causalities that end up with motor neurons no longer communicating with the muscles. It is a diagnosis of exclusion, difficult to make, impossible to predict and scary as hell. It's hoping that the CDC registry will get at all the contributing structures. I have found these forms very helpful and I'm sorry you're here with us.
Holly
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
Anticipatory grief is probably what you are experiencing and anger is one of the stages. What you are feeling is normal and you are right! is horrible to think that ALS exists and devastates everyone it touches pals, cals and families. I am still angry, but my anger has faded and I feel acceptance now. There are still days when I go thru all the emotions of anger, sadness, disbelief etc; but with time I have learned to live life as it is and try to treasure what we have.

Be careful, because the anger can lead you to all sorts of scams--you want to believe there is something that the doctors don't know or accept and that can lead to lots of money being drained from your bank account.

please stay intouch here--it is good to have someone to talk with who understands what you are facing...
 

cynwldkat

New member
Joined
Jan 18, 2013
Messages
8
Reason
CALS
Diagnosis
12/2012
Country
US
State
NC
Thanks Barbie--very good honest advice. I am desperate at this point--desperate for understanding--all the "whys". Sure I want a cure--and sure I do not understand all those reasons there isn't a cure yet but I do know that as sad as it is people feed off of desperate people--and I refuse to be the one to feed them! :-(
I am just more sad at this point. Sad and scared. I hurt so badly watching an outgoing man, my husband, who has worked hard for everything we own all of his life seeing his body die piece by piece while his mind stays in perfect condition--so he can wittness the whole dieing process of each part of his body. This man has never asked for handouts or any kind of aid. He has the most amazing work ethic of anyone I have ever known--this disease has no favorites.....sigh.... Breaks my heart..
 

cynwldkat

New member
Joined
Jan 18, 2013
Messages
8
Reason
CALS
Diagnosis
12/2012
Country
US
State
NC
One more quick question since I am so new with this situation--does the "happy" ever come back? I mean after we both accept the situation will there ever be real "happy" again? I have always been very out-going and bubbly and it is gone...all gone..I only feel sad right now...I need so badly to find it again for my husband so he can feel it through me like he has always done. Is this to much to ask or to weird? I am what has brought smiles and laughter to my husbands life--he has always been a serious person so this is a question I seriously am curious about. Thanks for any good ideas on how to get that back again.....
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
You'll find your "new normal" and yes, you'll find your happiness again, perhaps in a different form, but there all the same.

We find laughter and silliness in some of the predicaments we find ourselves in as well, because the alternative is to cry... and we've had enough of that.
 

ottawa girl

Very helpful member
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
I can only speak to my experience. Our life, as a couple, became very different at diagnosis. In many ways, it became better. Deeper. Immediate. Suddenly, busy careers seemed almost silly, in a way. This new attitude developed some six weeks after we heard the news. A previously planned cruise to Italy & Croatia was the perfect change of scene and occurred at week 7. Neither of us forgets about ALS for even one minute; it is a cloud over us, but the sun does peek through for longer and longer periods. Eventually my husband accepted that this was one thing he wasn't going to fix, so we set about discussing short and less short term plans. We refer to our new reality as a "lifestyle change". And so it is. Some of our plans include travel as this has always been our favourite endeavour. (Modernizing our home was always second place to travel). In October we returned to Europe and visited places on our list including the WWII landing beaches, Santiago de Compostela, and Fatima. Now we are planning a move to a one level home and addressing those needs, before we hit the road again.

Yes, we do have dark days, but fewer of them. By choice. I think of my husband as my superman. I knew I have loved him for some 27 years, but until this bump in the road, I never realized the depth of our love. It will see us through this. We do laugh. Everyday. Goofy things bring smiles. Hugging is also right up there!

You too will find your way.
 

cynwldkat

New member
Joined
Jan 18, 2013
Messages
8
Reason
CALS
Diagnosis
12/2012
Country
US
State
NC
So the tears are streaming down my face--pretty normal lately but at this tme it is because you have encouraged me to know that there is something to look forward to. Thank you....
 

baseballbrave25

New member
Joined
Jan 20, 2013
Messages
3
Reason
Loved one DX
Diagnosis
11/2005
Country
US
State
NC
My mother was diagnosed with ALS in November 2005. She had symptoms for two years before the doctors gave us the news. I had many of the same feelings that you are having. We have learned a lot during our journey, and still have many good times. My thoughts and prayers are with you.
 

ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
My husband was diagnosed almost one year ago with bulbar onset ALS. It was difficult at first but over time we have adjusted to the reality of this disease. We have made huge changes in our lives that have actually led to "happy distraction"! Of course he was forced to retire, we put our house on the market, finally sold it, I retired, we moved from NC to GA to be near our grandkids. Now we're building a new home with all the handicap features we assume he'll need. For those of you wondering about the future with this diagnosis, every PALS is different. Our path is a very slow one and we are SO thankful! All those sites that say bulbar is always faster, my husband is proof that it is not. This April will be two years since his first symptoms (slurred speech, excessive yawning). He is still golfing, hunting, skeet shooting, driving, "blazing trails" in our woods, and types non-stop at the computer. He can barely talk, eats sparingly, has a PEG for that day when he can no longer eat at all, but all-in-all he is enjoying life to its fullest while he can. His disposition is happy and we thank God everyday for all he CAN do. Who's to say this isn't slowing the progression? He feels no stress and doesn't let this disease get him down. I'm just putting this out there for those who think their life is over at diagnosis. Praise be to God, we are living the moment and are happy!
 
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