Status
Not open for further replies.

Sibling ALS

New member
Joined
Oct 22, 2014
Messages
3
Reason
PALS
Diagnosis
10/2014
Country
US
State
Florida
City
Auburndale
I am reeling from the shock of being diagnosed with the disease that killed my brother seven years ago. He was 59 when he died. I am 59.
I was told that the average life expectancy is 3-5 years. Tom only had 19 months.
I am beyond scared. I am terrified! I nursed my brother. I know what lies ahead. My husband doesn't know how physically and emotionally demanding caring for me is going to be. I told him that if my care gets to be too much that he has my blessing to put me in a nursing home. He vows that he would never do that.
My thoughts are swirling like leaves in a whirlwind. Tears come on like sudden summer squalls.

Let your family and friends know that you and your caregiver are going to need a lot of support as the disease progresses. Prayers, cards, postcards, phone calls and visits will be most welcome so that you don't feel like a leper, isolated and forgotten. Circle the wagons early!

I sent a letter out in all of the Christmas cards that first year, telling of Tom's diagnosis, explaining what ALS was and how it would affect him and asking for support. One cousin sent a postcard with a note every month. Those postcards meant the world to Tom.

At this point I don't know if it is better to know what's coming or to be ignorant as I was before.

I am a Christian. I don't know why I was given this cross to bear but I do know that God will give me the strength to carry it.
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
I am so sorry you are joining our group sibling ALS. I can offer you hope, support, a shoulder to cry on, and a place to vent. We rant and rave and laugh at the ridiculous, absurd, and sometimes black humor of this disease. Welcome.
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
Sibling, so sorry to welcome you here but you will find friendship, caring, and helpful information. Unfortunately, you know what lies ahead - the good news is, many on this forum have had the disease for several years, so you may hopefully not follow your brother's too short path.
All of us here get the part about "tears come on like summer squalls!" Come here often, and you won't be crying alone. Whether we are PALS or CALS, we walk this journey together. As you know, life will become sort of "normal" again when you get over the shock of your diagnosis. Hang in there. Hugs to you and your hubby ( who may find lots of comfort here as well as you!). Donna
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
your tale is much worse than most as you have an intimate awareness of what we are dealing with. I am 62, onset in 2010, mostly bulbar. more in blog.

typing getting pretty bad so excuse the bad punctuation :).


know this: we are with you! and remember the rules:

#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax

ALS is about living, not dying! PALS progression is like a snowflake, each is different.

Kindest regards,

Max


-----
Max - Wednesday, October 22, 2014 2:17:31 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
Welcome to the most helpful group that no one should ever have to join!
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi and welcome. I am sorry you are here though.
FALS is indeed an extra curse and it is very true you see the whole journey ahead from the moment of diagnosis. I remember when I found out.
Do you know your gene ? We are c9orf72. For c9 and sod1 there may be trials for genetic therapy soon. They tell me 2015 for c9. If you are either of those genes ask also about off label retigabine
One day at a time and I hope you have slow progression. Clinical course can vary wildly even in the same family. Your brother's ALS course is not necessarily yours
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,691
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry to be welcoming you here!

I agree, we knew very little about ALS when Chris was diagnosed and as I started to learn about it in that first month after diagnosis I was terrified. I cannot imagine what it is like to already know the details intimately as you do.

The only comfort I an offer is that you will get over the shock and you will find a way through. The terror of the first shock does ease, and we will do all we can to support you.
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
So sorry you need to be here, but welcome.

There are so many lovely and wise people on this site, both PALS and CALS. Please tell your husband the "stickies" are worth more than gold when starting this journey. My husband and I are new to it and I don't know where we'd be without this forum. (Though it sounds like you have a lot of wisdom already earned and shared, ie, "circle the wagons early!)

Just a word from this CALS perspective (that perhaps your husband shares)--caring for the love of my life is not a burden--it's a way to put my love in action. The last thing I want is for his suffering to be increased by worrying about the physical and emotional demands on me. So he does his part by taking the best care of himself he can (like not overdoing it), and I fill in where needed. And I promise to take care of myself--including bringing in help when that need arises (physical and/or emotional support). We're partners in life, so we are doing this ALS thing together.

Warmest regards.
Cindy
 

davbo49

Senior member
Joined
Sep 18, 2014
Messages
603
Reason
PALS
Diagnosis
04/2014
Country
US
State
kanas
City
kanas
sorry sibling your here............welcome to the site
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
4toml, you said it all so beautifully!. I'm going to read this to my hubby (who also worries about being a burden, which I guess goes with the territory!). You are a wise lady!
 

Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
Welcome, sorry that you have to be here. I come here almost every day, this is a upbeat site believe it or not. Feel free to vent, ask questions, someone always has a answer.

Janie H
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
So sorry that you have this disease, so glad that you have a positive attitude about involving your family and friends, faith is a wonderful help knowing we are never alone, we may never know why God allows these things to happen, but we do know that he is there by our side walking with us.
Love Gem
 

nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,016
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
I found out at the ALS clinic in Houston that they think Gileyna (finolgomid) will be a real breakthrough in treatment. currently the drug is approved for MS but has shown great promise in significantly slowing progression in ALS. Of course, the fda will probably take forever to approve it for ALS. It might be wise to find a Dr to say you have MS so you can get this drug thru insurance. Currently Novartis prices this at $180 per PILL. The head of novartis should be put in prison in my opinion.
 

danrising

Active member
Joined
Mar 26, 2014
Messages
64
Reason
PALS
Diagnosis
07/2013
Country
US
State
SC
City
Gaffney
So sorry you have to be here. We all worry about the burden that we are putting on our spouses and love ones. There is nothing fair about this dreaded disease for the PALS or CALS. If I had a choice, I would never put my wife through this. We have not been given a choice and I know how much she loves and cares for me. I am so BLESSED...There are so many that has no one.
 

Music67

Distinguished member
Joined
May 19, 2014
Messages
246
Reason
PALS
Diagnosis
08/2014
Country
US
State
Washington
City
Bellingham
Sibling ALS - Hang in there! I'm also so sorry for your diagnosis but remember that each one of us has a different set of symptoms according to where it affects our spine or brain. Myself, I was diagnosed this summer but I've had symptoms almost 3 yrs now and I'm still planning on marrying soon - so life can still go on! Our attitudes makes all the difference and with you being a Christian (like myself) should hopefully give you a leg up! Keep in touch!
 
Status
Not open for further replies.
Top