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buckmaster

New member
Joined
Oct 5, 2007
Messages
1
Reason
CALS
Diagnosis
10/2007
Country
US
State
Idaho
City
Lenore
My husband, a 25 yr. police officer now retired, and a Vietnam Veteran was diagnosed on 10-04-07 with ALS.... they told him 3 yrs at best... I am so broke up as he is just begining his retirement. I am wondering how others tell their families the "news" ! ! and do I continue to work to support our household? GOD BE WITH US. . . .
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Dear Buckmaster,

I am so sorry to hear this. I know it must be very difficult for you. You have come to a good place here for information and support. One of the things often said it to do what you want while you can. So if there is a trip or a special activity you have put off, do it now if you can. Do you have to work? Can you retire? Take a leave? What would work for you and give you the most time at home? Do you have help for your husband? There are many people on this forum in a similar situation and some of their ideas may be of great help.

As far as when to tell others... it's important to note how you guys communicate wth your family. In my family we always tell as soon as there is anything so we can begin to deal right away. We always begin with - I have some sad news... and tell it as straight and clear as possible. One thing is you cannot take care of everyone's hurt and pain as they deal with this and need to concentrate on yourself and husband and children if you have them - that's enough - let yours and his siblings and any parents help each other. I don't know you or yours and different people communicate differently within their family. Having said that, you will need to inform others at some point depending on your relationships and their need to know what is happening within your family. Please know your in my thoughts and prayers. Sincerely, Peg
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Buckmaster, You must feel as it you've had the rug pulled out from under you! The best you can do is give this time to sink in. It takes a while to grieve, get angry, and come to terms. You will know what to do as time goes on. Meahwhile, ask us anything. We have PALS (People living with ALS) who have been around for 10 to 15 years, and CALS (caregivers of PALS) who are very helpful. Regards, Cindy
 

pmbenb83

Distinguished member
Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
Hi Buckmaster,
I'm so sorry to hear that your husband was diagnosed with this. My husband is also a police officer and has 4 years until he retires. I understand totally how you feel about it being unfair since your husband just retired. We were in the process of buying our retirement home in Myrtle Beach, SC and right as I was getting ready to fax the contract, our phone rang and it was the UVA doctor's office. He has not been officially diagnosed, so we are still in limbo, but the doctors are "leaning" toward ALS. We have decided to travel now while he is still able instead of waiting until he retires. I work from home, but have an opportunity to work at a hospital in our area, so I'm trying to decide what to do in order to care for him the best that I can and still bring in a good income.

My advice that I have to repeat to myself every day is to try to enjoy every moment that we have together and not let worrying rob us of this time. I also try to remember that we could have an accident and be taken quickly, so at least we have time to still laugh together, see things for the first time together and say I love you more often.

Also, I've read other posts here that a person may be given a life expectancy of so many years and 10 years later they are still with us! Don't give up hope, but live in the now. Easier said than done sometimes.

My prayers are with you and your family at this difficult time. Please let me know how both of you are doing.

Take care.
Pam B in Va
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
buckmaster, I am so sorry for your husband, and the entire family. Damn this disease! The list just goes on and on and on, and still no cure, not even a little hope. This is not fair! May God be with you guys. I know exactly what you and your family are feeling right now. God bless you all.

Irma
 

mrstadpole

Member
Joined
Sep 12, 2007
Messages
26
Reason
Loved one DX
Country
US
State
California
City
Cathderal City
Buckmaster...

My dad was diagnosed last year and they told him the same thing.. 3 years max.. well, it took a year to determine that he had ALS and though the disease has progressed quickly, I don't think he's leaving us anytime soon. I am a fairly new member to this group and can tell you that the people here are great and offer a tremendous amount of support.. I can also tell you that I have heard of people living for many years with this horrible disease. There is no easy way to tell your family what is going on.. but I do think that it's best to just be honest. I agree with Pam.. live each day to it's fullest.. NO REGRETS!

I will keep your family in my prayers.

Kari
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi buckmaster. I retired after almost 33 years on the fire dept. in June 03. Oct. I was diagnosed. I'm still here but am in a power chair since March of this year. The docs give you a guesstimate. A guess on their part. Don't give up hope yet. Do wwhat you've been putting off. I went skydiving, took a cruise and saw the Grand Canyon. I was lucky enough to have the resources to do that and don't regret it one bit.
AL.
 

newtothis

New member
Joined
Oct 27, 2006
Messages
5
Reason
Loved one DX
Country
US
State
North Carolina
City
Charlotte
Buckmaster

I sooooooo understand what you are going through. My Dad passed away a few weeks ago and he was 59 and only retired 3 years ago when he got sick.

DAMN THIS DISEASE! It pisses me off so bad that he wasnt able to retire and do the things that he worked his whole life for and DESERVED. Everytime I see that stupid Capital One retirement commerical, I want to throw a rock in the tv.

The one thing me and my family learned quick was- YOU HAVE TO LIVE DAY BY DAY. Somehow, you have to get through and enjoy today and not think about the future. Your husband is still here and thats what matters.

Day by day..... thats all we can do..

Hang in there..... my thoughts and prayers are with you and your family. And know FOR SURE, you are not alone.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
buckmaster,

I'm very sorry your husband has been diagnosed with ALS. Y'all will be in shock for a while and the emotional burden you are under will turn to anger and eventually acceptance. I know that is hard to understand right now. This disease influences every single aspect of your family's life. Anyone that has to deal with this hopefully will be a better person in the end, as you have to be strong, very strong.

You asked about keeping your job - I think this depends on whether you have children to support or "need" the funds. Personally, if I was at retirement age and didn't have to work, I would want to spend the time with my husband. Decisions such as this are heart wrenching.

This forum has provided support for many. Please keep us informed about yourself and your husband.
 

johnals

New member
Joined
May 8, 2007
Messages
7
Reason
PALS
Country
US
State
mass
City
new bedford
was diagnosed in march 07 told average is 2 to 5 years, but i refuse to accept and the mind has a way of fixing things i was given foot braces for foot drop in june-kept trippingover toes and falling down-well in aug i went swimming and have not put braces back on since have not tripped once/ although i still have balance/ strength issues,every nite i tell my body to repair itself and do deep breathing for 10 minutes,bye the way mine is familial both sides and first recognized signs in 04. god bless and think possitive
 

larissima

New member
Joined
Oct 4, 2007
Messages
7
Country
US
State
MN
City
St. Paul
Dear Buckmaster,

I am so sorry for your husband's diagnosis. I hope you will get some good time together to travel or just "be" together in the coming years. Please let us know how you are doing. I will hold you in my prayers and heart.

L
 

Charles Adger West

New member
Joined
Oct 13, 2007
Messages
1
Reason
PALS
Diagnosis
08/2007
Country
US
State
Texas
City
Santa Anna
Sorry about your diagnosis. I am 64, was diagnosed in August. We had just moved into our new house that we built on our ranch the first of August. I understand how devastated you are. We have just figured out how to get on this forum. Have a different symptom every day - major pita. All the neurologist wants to do is pass out pills to keep me from complaining. e-mail me any time - Charles West, Santa Anna Texas
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Welcome, Charles. Glad you found us.

Liz
 

Ontario caregiver

Active member
Joined
Mar 4, 2005
Messages
72
buckmaster

We all hate this disease ,and like one word of adviceyou already recieved, you need time to let this sink in. In our case my husband was told he had ALS for sure when he was 45 on our 25th anniversay what a way to spend the day.

If you can do travell do, go to the places that you wish you did, Gary wishes we had went to the east coast in Canada, but not knowing I thought Gary was doing well but he hid his feelings and now wishes he would have travelled.

As to living 3 years, do not think that way, live each day to the fullest, Gary was told 3 year and now has had it symptons since 1997 but told he had it in 1999 so 3 years is not always true.

To working it becomes your choice, with me I ended up wearing too many hats and have been on a stress leave for a while. The sad side of this disease as time goes on the caregiver GIVES, so my advice keep working till it does not work out, take a leave or if you are close and can afford it retire and enjoy your time with your husband.

We all have a story, but it becomes your choice, and everyone with ALS has it in different degrees and stages, so Gary's stages will be different then your husband.

My words of wisdom, never wish you would have, and your family and friends will be with you through all this.

Keep in touch with this forum as you will learn lots and you can vent here too.

You can send me private emails if you care too and best of luck to you and your husband and all your famillies.
 
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