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Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
Over the last 10-15 years dad has faced many health issues such as severe arthrihtis problems, 2 disks removed in the lower back with fusion, carpral tunnel surgery on both wrists, and rotator cuff surgery to name a few. Within the last 3 years or so there have been more issues. He started having a lot of trouble with weakness in his right arm to the point he couldn't crank the car at times. The doctor did xrays and other tests but didn't find much. He finally sent him for some physical therapy to try and build the strength back up. The therapist felt he may have had a stroke and then the doctor and the therapist argued back and forth about it and we got nowhere. Dad hasn't been able to have MRI because of a nerve stimulator in his lower back, but it has since been removed. About two years ago he had to have mitral valve repair open heart surgery which he handled well and recovered. During the recovery process he started to have some problems breathing and being short of breath and was given oxygen to use as needed at home. He then developed problems swallowing and his breathing problems have progressed to the point where he is now on 4 liters of oxygen during the day and 3 liters of oxygen with bipap st at night and has about 50% lung function. His right arm has weakened to the point he can't use it and the left arm is starting to weaken. He also has started having a very hard time trying to stand up. Over the last 2 years he has had many falls but thankfully has not had any serious injury from them. When he would fall he said there was no warning, it just seemed that his legs would just go out and he would start down. We were sent to get a second opinion on his breathing problem and that doctor suggested that he may have a neuromuscular disorder that he saw no reason for his breathing to be the way it was and to see a neurologist. Coincidently we had one scheduled for the next week for a 6 month check up for another problem. When we saw him he was very concerned and said he feared it could be ALS and wanted to get us to the clinic at Duke for furthur testing but he felt like we needed to move fast because of the amount of decline in the 6 months since he saw him last. He went ahead and scheduled him to have the nerve test done with the needles and said we could cancel it if we got in at Duke before it. (Not sure of the offical name of the test) It was going to be a while before they could get us in at Duke because they are backed up. His neurologist did the test yesterday and confirmed his and our fear of ALS and gave us a grim outlook of 3-4 months left based off of how fast this horrible disease is progressing at the moment. Dad has made it clear he does not want any kind of feeding tube or breathing tube but is open to other types of treament if available. While I am sure we having been fighting this enemy for several years without knowing what it was our offical fight with ALS started on 12/3/13, dad is 79! I plan to make everyday as fulfilling as I can for him and push him to do as much as he can while he can. It has been hard on me and mom but we stay strong for him and do all we can to give the best care possible and make him as comfortable as possible. He has been a father to my sister for 40 years, to me for 35 years, and a loving husband for just shy of 50 years. I apologize at the organization of this post, I know it was all over the place but I just needed to get all of these thoughts out.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,280
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
I am very sorry for your family. It is a family disease because it affects everyone. We are here to answer questions or just listen. Ther are many wonderful people here and lots of information. No need for apologies here, you have a lot to wrap your mind around and sort out.
 

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
Thanks! It really is nice to get it all out there. I have a great support group of friends, but I am sure they get tired of hearing about it. Sometimes it just helps to talk about it.
 

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
We have a Cervical CT Scan scheduled for Saturday just to verify there are no new issues causing any of his problems and some bloodwork also scheduled for something. Hospice is supposed to be contacting us soon to get setup to help us out.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
so sorry your family is on this journey--but it sounds like you are a strong advocate for him. Don't worry about that time line-NO ONE KNOWS how long he has...the neuro who diagnosed my husband said 3 years and here we are at 6.

try to get in with the ALS clinic ASAP, they can help tremendously with his care in the beginning.

we are all here for you..stay in touch
 

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
Thank you! I guess we will go to work on that. The neurologist told us there was no need to drag him up and down the road to a clinic now that we know what we are fighting. The nearest clinic is about 2 hrs from us and the one we were going to go to is about 4 hrs away. Hospice is coming tomorrow to evaluate him.
 

TGB1

Distinguished member
Joined
Mar 23, 2013
Messages
197
Reason
Lost a loved one
Diagnosis
12/2012
Country
US
State
PA
City
Pittsburgh
Snowman - so sorry about this diagnosis. My mom is 86 and she has bulbar onset als - meaning she can't speak or swallow and has a feeding tube. She was diagnosed almost a year ago now. She is still strong and walks with a walker. It is very difficult to watch an elderly parent suffer with this disease. I hope hospice can give you some relief. This forum is invaluable to me because I can vent my feelings and frustrations and everyone understands almost exactly what I am going thru. You will find a lot of support here. Take care.
 

Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
I live in Rock Hill, SC and go to the Charlotte clinic, very important to go to the clinic, there is one in Columbia and Spartanburg, I'm not sure where Sumter is located, the clinic has been a lifesaver for me.
 

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
Oh ok, the clinic in COlumbia might be doable for us. Sumter is about 45 mins outside of Columbia.
 

mariam

Member
Joined
Nov 5, 2013
Messages
29
Reason
Loved one DX
Diagnosis
10/2013
Country
US
State
ca
City
Orange
So sorry to hear about your Dad. My dad is also newly diagnosed in October, he has bulbar onset. I am doing everything that I can to make his life pleasant, loving and enjoyable. My dad is 75 and he and my mom are moving in with me and my family in the next 2-3 months. Hang in there, its so nice that you can be with him and encourage and spend time with him.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,598
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Dad has made it clear he does not want any kind of feeding tube or breathing tube but is open to other types of treament if available. While I am sure we having been fighting this enemy for several years without knowing what it was our offical fight with ALS started on 12/3/13, dad is 79! I plan to make everyday as fulfilling as I can for him and push him to do as much as he can while he can. It has been hard on me and mom but we stay strong for him and do all we can to give the best care possible and make him as comfortable as possible. He has been a father to my sister for 40 years, to me for 35 years, and a loving husband for just shy of 50 years. I apologize at the organization of this post, I know it was all over the place but I just needed to get all of these thoughts out.

We play the hand we are dealt. It sounds like your dad understands that. good for him and tell him ne is not alone!

Max
 
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