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Kari M

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Joined
Oct 16, 2008
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Loved one DX
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Missouri
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St. Charles
This is my first time posting on this website. I have been reading all of your questions, comments and observations since my dad was diagnosed with ALS in Sep. 2008. He started off having problems with his right arm in 2007, shortly after a car accident. His hand and forearm were very swollen and he was losing muscle stregnth in his arm and chest. You could see the difference in his arms and chest muscles with his shirt off. At first doctors thought he might have some disc problem in his neck. (In the past he had neck surgeries and disc problems.) The neurosurgeon performed 2 neck surgeries, needless to say the right arm/hand kept getting worse, puzzeling the doctors even more. Then they thought he had carpel tunnel eventhough he wasn't experiencing any pain. So, surgery for that was performed and once again, no change in his hand or arm. Still no change. I live in the St. Louis area and finally convinced my parents to come to a doctor down here. He was diagnosed and then sent to Barnes for a second opinion. The diagnosis was then confirmed. We (my brother and I) asked my dad to be tested for the SOD1 gene mutation since my dad's brother also has ALS and had been living with it for 9 years. The test came back negative for the mutation. The doctors told us that ALS in family cases without the SOD1 gene mutation were less than 1%. My mom is his primary care giver and in September had to quit her job to stay with dad. He can go to the restroom by himself most of the time and can feed himself with assistance when needed, other than that he depends on my mom for everything. We recently got established with a pulmonologist and he expressed that he doesn't want a feeding tube or breathing assistance when the time comes. The doctor brought up a bipap machine and we feel that dad could really benefit from it. He doesn't want to do the testing and doesn't feel that he needs one at this time. (yes he is still smoking) :( It is hard to watch my parents and what they are going through with this nasty disease. My mom is a trooper and has health problems herself. I offer to come up(I live 2.5 hours away) and clean, sit with dad so she can get out of the house, cook or whatever needs to be done and she says they don't need help yet. She is afraid that if I start coming up dad is going to think he is dying faster. I guess that kind of makes since but this is really exhausting for her. He is needing to use a wheelchair now, not all of the time, but he comments life is easier and less tiring when he does use one. He sleeps quite a bit, is choking more, speech is extremely slow and very slurred, has had 2 bad falls in the past week I understand that all comes with the disease, but that doesn't make it any easier. It seems like things are progressing so fast. Any advise or thoughts about the progression of my dads ALS?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
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Country
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State
On
City
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Hi Kari. Sorry about your dad but welcome. I moved your thread up here. You should get more advice up here.

AL.
 

Kevinski

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Joined
May 23, 2006
Messages
70
Reason
PALS
Country
CA
State
Alberta
City
Calgary
hey there

Hi kevin here from Calgary I have bulbar onset als speech is gone but my mobilty is still good some issues but i cannot complain.This disease is hard on the whole whole family .I am 49 have two teenagers one is away at college and the other one is home and in her last year of high school.They find it tough knowing that there Dad has a terminal disease ,just as you do about your own father.I have told my kids to chase their dreams and not to let whats happening to me stop them from living there lives to the best of there abilities otherwise this disease wins on more than one front if you understand what i mean.Your mother as my wife does thinks about life without with out us and that is tough..And i am sure you feel you should be there more even though you are a good drive away.My only advice is to stay strong for yourself and your parents and be there to help when you can and live life to the fullest as best you can under difficult circumsatnces.Speaking as a parent with this disease ,I am sure your Dad would not want it any other way.All the best and take care...Kevin
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
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Kari,

I must agree with Kevin. I'm also speaking from the side of the parent with ALS. I was diagnosed with bulbar onset on 6/3/08. The slurred speech stuff started about 5 months before that. I am a 48yr mother of 3 boys, 18, 15 and 8. My husband is a retired firefighter, he just retired in Aug 08. We live on a farm and are very, very active in our boys' sports events, as well as their lives. We are in the process of watching our oldest son fulfill his dream of leaving home for college this summer, and it looks like he has a very good chance at a full college scholarship for pole vaulting.

Our middle son has already made plans to play baseball with the Cardinals, or football with the Steelers. The 8 yr old just tries to match his socks every day, so I don't sweat over him much...yet!

They understand everything that is going on with me, and they also know that yes, I have ALS, but they tell their friends that ALS does NOT have their mom!

We laugh more, cry more, stay in pj's all day more ( on the weekends ), the boys are learning more about cooking, cleaning and working around the farm than they probably want to, but eventually they will thank us for that. They also have spent the last 6 months helping my husband drywall, paint, level the yard, and other misc chores at a little house that we are hoping to sell.

Yes, my husband is scared as hell, and doesn't want to do any of this without me, but I plan on being around for at least 30 more yrs to bug the crap out of him and the boys. We try not to dwell on what I can't do (actually some days they're thankful I can't talk on the phone !), and we laugh like crazy when we all cram onto the couch and look at old pictures!

Didn't mean for this to be so long, but ALS doesn't have to be a death sentence. Life is what you want to put in to it, and we just have decided to smother it with laughter!
Hope you have a good week,
Never give up,
Never let up,
Never lose faith,
brenda
 

Kari M

New member
Joined
Oct 16, 2008
Messages
6
Reason
Loved one DX
Country
US
State
Missouri
City
St. Charles
Thank you for moving my thread. I am not exactly a computer whiz! :)
 

Kari M

New member
Joined
Oct 16, 2008
Messages
6
Reason
Loved one DX
Country
US
State
Missouri
City
St. Charles
Thank you for your response and advise. It sounds like you have a great supportive family and a very upbeat attitude! Have a great day! Kari
 
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