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Eponine

Member
Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
Hello,

Wow, I am happy to have found these boards. I have been reading some of the topics and it's exactly like what I am going through.

My dad first showed symptoms back in the fall. Muscle spasms in the arms. I would say to him that something was wrong, but being a stubborn man, according to him, nothing was wrong.

Fast forward to the holidays. He did look good and my siblings and I tried getting him to a Doctor. Nope.

Finally in March, he went. At this point, his left arm was bad. Spasms in arms and legs. The Doctor did and EKG thinking it was a stroke. We now know it wasn't. So, back and forth to the doctors in the following months. We had made an appointment in March to see the neurologist but couldn't get in until August.

In early July, his back starting hurting him. Back to the doctors for more tests. It was then discovered that he has prostate cancer. We found that out on the 6th. This past monday, he went for a biopsy. We then got a call that same day that the neurologist saying that had an appointment open for yesterday. My sister took and there we learned what I suspected for a while. ALS. He is scheduled for an MRI and more blood work next week.

It's been a crappy 24 hours. My dad is deeply depressed and emotional. He told the Doctors that he does not want a feeding tube. Since March, I have noticed that he is getting worse. He is quickly losing the mobility in his other arm and his legs are getting weaker.

I'm scared. I don't want him to suffer and I'm so overwhelmed because I have no clue how I'm going to do this. I live with my dad. I have a brother (whose married with 3 kids) and a sister (who is single). Yes, they help too but I'm with him all the time when I'm not working.

I felt like the biggest jerk this morning going off to work. I felt guilty. He was crying. I was trying to tell him it would be ok but he kept saying no. I sent my brother over after I left. I don't want him to be alone all day. I got him up, dressed and fed. We are having a nurse come in to determine what to do with him, where to place him in the house, etc.

I am looking forward to all the information and suggestions from everyone. At least with this forum, I know I'm not alone.

Thanks for listening!
 
L

lrob

Guest
eponine

i too am new here and just read your message. i am so sorry for all that you, your dad and family are going through. i walked that path last year. i was diagnosed aug. 2005 with limb onset als. no one can know the devastation one feels when they receive that diagnosed. i wish there was some word i could say to you and your dad. i have been blessed with individuals that are knowledgable and helpful regarding diet, supplements etc and for me it has been beneficial but then my progress up to this point has been slow compared to others. all i can say is it is helpful for me just to have someone to talk to that understands. if i can be of help for you at least that way please write. lrob
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Eponine and Irod

To get you started I would advise you both to review as many of the Threads here as you can that fit your problems. You can always use the search tool above to look for some key words.

We all know what you are going through is hard because we are facing the same problems. I would not feel guilty if I had to resort to some type of hospice care or in house nurse or whatever.

There is only so much one person can and should do. Watch out for burnout. Your dad needs you but not at the expense of you losing your health and ability to help him.

We will be praying for a door to open that will help you work out these problems.
God Bless and hang in there. You are not alone.
AL:)
 
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Eponine

Member
Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
one day at a time

lrob and Al,

Thank you both for responding. I have received some excellent information from this site and the boards.

Things are improving a little bit. My dad's spirit is somewhat better but there are times (and I'm sure they always will be) when he breaks down.

I can not even imagine being told you have ALS. I have no idea how it feels but I know that there is alot of support out there and here too.

Slowly, we are getting things organized and into a routine which helps things flow along better.

I do noticed that little by little, his mobility is slowing down. He is now using a cane and we are looking into chair lifts for the stairs.

One thing I know I can rely on is the informaion and support from everyone here! Thank you again.
 

momina

New member
Joined
Jul 31, 2006
Messages
4
Reason
Lost a loved one
Country
CA
State
BC
City
Vancouver island
hello, welcome to the site, I have been through the diagnosis of my mother and know how you feel if I can give you any advice at all it would be to cherish every moment you have with your father, he will be emotional, up and down, I look back on my time when I remember when I became so frustrated with the situation and wanted to be away from it , but when it all comes down to it it's still the little things that count, my mother was affected very quickly as well and it felt like I was in a hurricane, It is so hard to see a loved one suffer with this, So never stop with the little things, smiles are what you will always remember, don't forget to stop and smell the roses with your father. It sounds like things are coming along and your father is receiving the care he needs, we are all here for you and there is so much support on this site as you go through this time! God Bless you and your family,

Sincerely

Maureen
 

Eponine

Member
Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
Hi Maureen,

Thank you for responding. Yes, I am trying to cherish each moment I have. Each day I wake up knowing I'll never get the day prior back and we are possbily one day closer.

Thank you for the care and support (and to everyone else too!)
 
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