Status
Not open for further replies.

NeedCourage

Active member
Joined
Feb 22, 2014
Messages
72
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
Hello,
Firstly, please please excuse whatever mistakes I may be making in format or etiquette in this first shaky terrified post.

'CL' was diagnosed Tuesday March 4 with ALS. Doc is head of area ALS clinic so knows his business. So far his only symptom is right foot drop and mild twitches on all four limbs which only I can feel and 25 pound weight loss.

My husband is a vital, strong extremely energetic 76 and still works 40 hours per week since I have been mildly 'handicapped' for almost 10 years. Yesterday, Saturday, he announced at the weekly business meeting his diagnosis. We are applying for my social security (I am 64) and will get him onto Medicaid asap - he wants to stop working. It's a tough job demanding 13 hours days at times.

Needless to say, this has knocked the wind out of our sails - no - I guess it sunk the boat -- or feels that way.

This morning he said to me, "Why I am still taking these heart meds?" insinuating a heart attack would be a better end. He had a major one in 1993 and has been kept very healthy with BP meds and a diuretics and high dose statin.

His question brought on another crying jag which I have been doing a lot of for about a month since ALS was just a remote possibility... I am terrified! We have no children and I would be his sole caretaker - we have no retirement.

Perhaps he is right. It all seems so impossible with my limitations and his forthcoming needs.

I feel like I should apologize for this pathetic post but I am desperate to get some kind of grip on this ? turn in the road for us.

Thanks for reading. (Nancy)
 

Jane

Distinguished member
Joined
Feb 7, 2004
Messages
168
Reason
Lost a loved one
Country
CA
State
ON
City
St Catharines
Hello Nancy, I am sorry you and your Husband are facing ALS.

All you are feeling and fearing now are natural. It is a frightening diagnosis.

If you have a local support group in your area, it would be a good place to get support from people going through the same things. Folks are very helpful with moral support and wonderful info on equipment and many other things that will help you. Many people here on the forum will also have invaluable info for you.

Please come back again.

P.S. Your post was just fine.
 

Tx Daddy's Girl

Distinguished member
Joined
Jun 2, 2013
Messages
137
Reason
Loved one DX
Country
US
State
Tx
City
Beaumont
I'm sorry, and yes - the diagnosis is like a giant punch in the gut. At 76, I'd say absolutely retire and do whatever you want to do before you can't. That being said, keeping things as normal as possible as long as you can has its advantages too.

My dad went thru the same thing, why take this med, I'd rather have a heart attack. Just know, a heart attack or stroke won't always kill you. I will say its very important to get a living will that way if something like that happens there will be no efforts to save him. Have you looked into any low income living arrangements? My community has several senior citizen living communities for low income and disabled people that are in your exact situation. Your ALS clinic might have info on this.

No apologies are necessary- even if you don't post, just reading is a comfort.
 

NeedCourage

Active member
Joined
Feb 22, 2014
Messages
72
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
Jane, Thank you for warm welcome.
Unfortunately I cannot find any support groups in my general vicinity or county.
This may have to be it, esp since I have no one I can confide in.
My dearest friend and lady-love died this year from malignant brain tumor - quickly, too.
I haven't recovered from that loss yet.
Life is certainly challenging - to say the least.
Thanks again, Jane. I appreciate your note more than I can adequately express.
Fondly,
 

NeedCourage

Active member
Joined
Feb 22, 2014
Messages
72
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
Tx Daddy's Girl,

Good point! Lordy imagine a stroke on top of this!
Thanks for the support and very good & encouraging support.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
He sounds like he is reeling from the diagnosis and feels hopeless. that is normal, and will pass with some time. he has mild symptoms right now, why bring on more trouble? I would say, stop working, get all the affairs in order, and enjoy each other and the time you have. Don't stop taking other meds yet-- he should really think harder about that when he is not in shock. He can stop anytime, but why when he still has much to live for.

You both are under a lot of stress and I am so sorry for the diagnosis.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,944
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
I'm sorry for your situation, Nancy. I know that SW PA can be no man's land (we lived in NJ and DE) but remember there are teleconferences/online support groups available via Google Hangouts, Yahoo, Facebook, the various MDA/ALS chapters and the virtual advocacy program via the national ALSA, that can identify people close to you that are affected, as can your local ALS clinic, with proper safeguards. Are you sure you are not in the W PA ALSA chapter service area? On the map it looks like you would be, so I could check your county on their site and contact them.

Often, "why I am still taking meds" doesn't mean "I want to stop" or "I want to die." Anyone who has been through an MI or stroke (my husband's had at least two, one of which required relearning speech) knows how painful and potentially long-term the event/recovery is. Your husband is likely venting, with good reason. If he continues to want validation of the "why," my usual approach is "Would you want to deal with a stroke or heart attack on top of everything else? Most don't kill you on the spot."

My husband was born with a generally fatal genetic disorder that has entailed endless eye surgeries and partial blindness. Halved lung function way pre-ALS, two heart valve replacements, an aortic dissection, three other aneurysms at last count that haven't been operated on. He takes four antihypertensives to reduce the stress on these vessels, two drugs for diabetes and warfarin to keep his artificial valve/graft from clotting and causing a stroke. He has lived with constant pain from herniated disks that would have been operated on in other patients, and swelling that causes pressure on the base of the spine (part of his disorder). You get the idea.

Is he bitter, depressed, etc. at doing so poorly in the health lottery? You bet. Does that mean life is no longer worth living another day? To date, no. When his quality of life is no longer what he considers survivable, we will make sure that it is not. And I would reassure your husband the same thing if you agree. Meanwhile, we can live to live or live to die. It is your, my and his choice.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,529
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Hi Nancy. I'm so sorry you've had to find your way here, but glad you made it once you looked. My husband made the same kind of comment right after his diagnosis in January. The only response I could muster was that not caring for his other health conditions could make the journey even more difficult. I am relieved that he got past that thought quickly and is taking care of himself.

I am healthy, but I fell a few days ago and all I could think was that I don't dare injure myself now. I think everyone here can appreciate your fears for the future; don't apologize for expressing them here...I've found it to be a very safe and supportive, as well as honest, place. Welcome.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
I am sorry that you have to join this group. You are both in that horrible stage, where you are reeling with the news, and mourning the loss of dreams. This will settle, and you will make new dreams, and begin to adjust, as much as one can with this disease, to a new life that can be quite rewarding. We take every opportunity that we can to experience something new in life, and my husband in 2 years is now a quadriplegic. As far as your husband not taking his meds, there is some research that suggests that statins may not be worth the 3% decrease in stroke or MIs. Statins work by suppressing an enzyme in the liver that interferes with cholesterol production. However, this enzyme, HMG Coenzyme-A reductase, is not only needed for cholesterol production, it is also needed for several other fundamental biological processes, including production of one of the most essential nutrients that the body needs, which is Coenzyme Q10, an incredibly important nutrient especially for cell energy and heart health. HMG Coenzyme-A reductase is also needed for producing selenoproteins that are the backbone antioxidant system of defense for every cell in the human body, required for healthy immune function, and primary activators of thyroid hormone. The cholesterol pathway that HMG Coenzyme-A reductase is needed for is also linked to the production of vitamin D, adrenal hormones, and sex hormones. It also makes many gene-signaling molecules in the isoprenoid family that are required for healthy cell function and the prevention of cellular mutation (cancer). All of these processes are indiscriminately interfered with by statins, which is potentially devastating to human health. The risks can increase along with the dosage.
There is also some research that it can cause "ALS Like syndrome". I do not dismiss the use of western medicine easily, being a critical care nurse for over 33 years. Vit. C, Vit D, B12, folic acid, and many others are often low in people with ALS, so a good multivitamin is something that I would definitely recommend.

Paulette
 

Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
Hi Nancy, when I was diagnosed I was sure that I couldn't deal with it, I am single, have a mortgage, I felt that I could not afford to go on disability. Things have worked out, there is a lot of help out there from MDA and ALS clinic, when I applied for disability they offered home health care at no cost. I have a breathing machine, cough assist, PEG tube supplies, all paid by medicaid. I thought I would never get through the paperwork but it was worth it.
 

FSHolbrook

Distinguished member
Joined
Oct 14, 2013
Messages
216
Reason
PALS
Diagnosis
09/2013
Country
US
State
ND
City
Fargo
Hi Nancy,
You have no need to apologize. I think that at least some of us have considered options to end this awful disease. I know I did. I am 73 but, after considerable crying and introspection I decided that I would be a better example to my family if I faced this head on so that perhaps if any of them had a truly bad situation I would be an example of how to face adversity. I have found great strength in the local ALS support group. It is truly a blessing. I am so sorry that you had to find this forum but, I think that you will find really good information here and support.

Rick
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>... I think that at least some of us have considered options to end this awful disease. I know I did. I am 73 but ... I decided that I would be a better example to my family if I faced this head on so that perhaps if any of them had a truly bad situation I would be an example of how to face adversity ...

Thanks, Rick -- that is right where I am and this input is a must read [for me, at least]!

Max
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Hi Nancy,
I decided that I would be a better example to my family if I faced this head on so that perhaps if any of them had a truly bad situation I would be an example of how to face adversity.
Rick
Rick;
Heb 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us. 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

Our faith is so important to us, and we have found extremely wise and inspiring words to help us in this journey.

But I would like to share with those that do not believe in a God that I have personally experienced in both my own personal life, and in the my professional life the effects of a person giving up, and taking their own life.

Growing up, I heard my mother threaten suicide every time things got difficult, and I and my sisters have found that that is a thought that enters our mind as an alternative when things get difficult. I decided to break that chain, and never allowed my mother to utter those words around my children (she did try once) and I myself sought help when those thoughts came.
In my practise as a nurse dealing with suicidal patients, I often saw it as a family coping mechanism, and could trace a history in that family. Interestingly, when I asked that person who had family if they would want a family member to use that option they would look horrified and say "NO!" I told them my story and explained that they were setting an example for those that they loved, and I found many in tears and asking for help.

This disease is horrible, and I would not judge anyone if they felt that they wanted to end their life, as it is their life to take. But my husband has touched so many lives with his bravery and devotion, and he has begun to be thankful for ALS as a mode to encourage others.

Paulette
 

Jeff Long

Distinguished member
Joined
Jul 21, 2011
Messages
254
Reason
PALS
Diagnosis
10/2011
Country
US
State
NC
City
Raleigh
Nancy,
Glad you found this place, although none of us wish you had to. You can say whatever you want to say here without concern for protocol; you already have enough to worry about! Some of these folks are wicked-smart... I read here often just so I don't feel so dumb!

Your husband's in a place we've all been before... a giant whirlwind of "what, why, how and when" that has storms of questions and seemingly no answers. This will pass, and in the near future your ability to process the options and realities will be more clear. That would be the time to make decisions that carry significant consequences.

In the meantime, cry when the need arises. Scream, spit, throw things and break an object or two so you can switch gears and start kicking Uncle Lou right square in his backside. As many here have shown, we can do the hard things we never expected to have the need or ability to do.
 

NeedCourage

Active member
Joined
Feb 22, 2014
Messages
72
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
Dear New Friends,

I am so happy to have heard from all of you - I never expected such a warm embracing welcome. You have helped me to relax a bit and even take a breath. I attempted to leave a short note on your pages but have no idea what the workings of this forum are ... like how and where to reply properly to postings or send a private message or ? whatever.

Anyway - the important thing is that you cared enough to share a bit of yourselves with someone new - and I'll try to reciprocate as time goes on, to keep the love going. It feels like I'm surrounded by a circle of angels...
: )

Peace & hope,
Nancy
 
Status
Not open for further replies.
Top