Status
Not open for further replies.

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
As some of you know, my dad was diagnosed with ALS in February 2007. I have a question regarding the pain associated with ALS. I don't know if it is the ALS or the fact that he has arthritis of the spine also but he "STAYS" in pain most of the time. He has a huge bulge in his back on his right side that gives him so much pain and I don't know if it is coming from the ALS or the arthritis or a combination of both.

He is taking so much medication now for the pain and the ALS doctor put him on a pain patch, which he is refusing to take right now because it contains morphine...I feel so helpless, I have prayed and prayed about this and just get so upset about it because he doesn't deserve to be in this much pain...

It is just amazing to me that in January of this year he was actually working and now he is pretty much in an electric wheelchair when out side home and using a walker when inside. It breaks my heart.

Thank goodness I only live about two mile from my parents because I go over everyday after I get off work and visit with him and it always leads to me massaging his back each night before he goes to bed, it's kinda a ritual now...LOL He loves it and is getting so spoiled to it but that is okay, I will do it everyday if that is what he wants, if that will bring him some relief even for a minute and a smile to his face.

This disease has taught me so much, so much I needed to be taught and so much I wish I had never known. It's such an unfair disease, but then again, I guess what disease isn't, I guess I am just needing to vent. Along with my husband, my parents are my life and we are so incredibly close. My husband and I are trying to adopt and I struggle with should we be doing this right now. We've always wanted children and have been married for 13 years and things are finally falling into place where the adoption is concerned but I guess I selfishly worry that it will take time away from my time with my daddy...there again, I know nothing would bring a bigger smile to his face than to see me and my husband with our own child/children...I just want to do what is right and I am struggling with that right now....

Thanks so much for letting me get this off my chest right now. It's been a tough past few months for my family as I am sure it has been for each of you...

Hope you all have a wonderful day! :lol:
Michelle
 

paula B

Active member
Joined
Jul 23, 2006
Messages
87
Reason
PALS
Country
US
State
wisconsin
City
seymour
Hi Michelle,
I too have alot of pain because of als. I find when my back is sore moving to a diff position will sometimes help. Does your dad have tilt or recline on his chair? It is wonderful to have.
I think it would give your dad great pleasure to see you with a child,,his grandchild.Look at it as another person to love him.
As far as making the right choices,,,what helps me is,,i try and make the choice based on if i will regret it or not later on down the road. If your dad knows you have been wanting to adopt he would feel awful knowing you didnt because of him. You can be there for your dad but dont put your wants and needs aside,,its not fair to you or him.
I am sure you will make the right choice for you.
PaulaB
 

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
Thank you PaulaB for replying. My dad doens't have his chair that he will be using throughout his disease yet, we've been waiting for his Medicare or Medicade (not sure which) to kick in; however, they have already come to my parents house to fit my dad for his new chair. We did get the tilt on it along with many other helpful things attached to it. I teased with the MDA guy that came out and told him we wanted flames down both sides and spinners on the wheels...LOL :mrgreen:

You all are such a great support for me, I appreicate all the feedback..

Michelle
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Michelle- what a lucky Dad to have such a caring daughter! You don't say what age child you are thinking of adopting but let me tell you there is nothing like the pitter patter of little feet to put a smile on the face and into the heart of every adult within sight. Good luck with your decision, whichever way you decide, and let us know how it works out! Cindy
 

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
Well Thanks for the kind words Cindy but I am actually the lucky one. My dad is my hero, he is a Vietnam Vet with a Purple Heart and worked every single day until January of this year. He is a wonderful dad, husband and role model. I just wish I could take some of his pain away from him to give him a rest for a while....anything I can do I will, no questions asked...You guys are a wonderful support for everyone touched by ALS/MND, I just thank God I found you all...Michelle
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Michelle

Michelle,

The pain patch, is it Fentanyl Transdermal System. The patch is put on the upper part of the chest every three days. Alternating the new one on the other side of the chest.
I have this for my brother Timothy. We were talking to the hospice nurse today because he was reluctant to take the patch, I've had it for 3 weeks. She said the side effects are not bad because the body is already use to pain Meds. It want put you into another ozone. It takes a day for it to absorb into your body, and your body adjust to it. The only way it could be bad is if you applied all of them at one time. Which is not the instructions. She said these really help ALS patients with severe pain. We are starting this soon!


I hope this helpful!

Lorie
 

brooksea

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

My husband and I adopted our son when he was an infant. We had been married twelve years. Our son is now almost seven.

I agree with Paula B, you may regret not going ahead with adoption if that is truly what your heart desires. And if your Dad knows this, it would really add to his depression if he felt he was the reason behind your decision not to adopt.

My husband has ALS and I think our son is one of the greatest things in his life and helps with his determination to go on as long as possible (to see him go to college, etc...).

Children have a way of making life worth living.

CJ
 

POSFirebird_86

New member
Joined
May 23, 2007
Messages
9
Country
coles
State
IL
City
Ashmore
Lorie said:
Michelle,

The pain patch, is it Fentanyl Transdermal System. The patch is put on the upper part of the chest every three days. Alternating the new one on the other side of the chest.
I have this for my brother Timothy. We were talking to the hospice nurse today because he was reluctant to take the patch, I've had it for 3 weeks. She said the side effects are not bad because the body is already use to pain Meds. It want put you into another ozone. It takes a day for it to absorb into your body, and your body adjust to it. The only way it could be bad is if you applied all of them at one time. Which is not the instructions. She said these really help ALS patients with severe pain. We are starting this soon!


I hope this helpful!

Lorie

My Father in Law has been taking the patch for almost 3 months now. He never wanted to take it and now it has been so much help to him he doesnt know why he didnt take it in the first place.
 
Joined
Jun 19, 2007
Messages
20
Diagnosis
31/2013
Country
US
State
Missouri
City
New London
Hi !

I am a new member and just finishished reading your post . I also have wondered if pain is involved with ALS . I have lost 3 very close members of my family , one of which was my mother whom i took very loving care of for 13 months before i lost her to ALS .You are a very special & loving daughter to take care of your father ! Iwill put you & your father in my prays Take care and GOD bless . love , eyeoftheestorm
 

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
Thank you eyeoftheestorm!

Thank you so much eyeoftheestorm for the kind words...boy, your family has really been touched by ALS hasn't it. I am so sorry for your loss of your family memebers that were stricken with ALS.

You too are a wonderful person for taking such wonderful care of your mother for so long during her illness. Like I said in a previous post, it is my pleasure to take care of my daddy, I am honored that he wants me to be the one to help my mom take care of him...he is my strength, my shoulder to cry on and my inspiration. I am very lucky to have the daddy that I have. It might seem a little silly for someone that is almost 35 to still call their "dad" "daddy" but that is what he is to me, my daddy...:-D

I am so glad you've joined this wonderful forum. I hope you feel as at home here as I do....

Hugs!
Michelle
 

AAA

Member
Joined
Feb 14, 2007
Messages
11
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
AZ
City
Anthem
Pain with neurological disorders

Pain is my chief complaint. I have been told by all the neurologists I have seen that 'there is little pain with neuro disorders.' I have been to four different neuros and I have them stumped. Whatever I have has been steadily progressing since Jan. I have all of the symptoms of PLS except for the Bulbar. My grandma died from ALS 18 years ago. If someone would like to talk to me privately, I really could use the support.

Thanks, Angie in AZ
 

Marinus

New member
Joined
Jun 6, 2007
Messages
1
Reason
PALS
Country
US
State
Florida
City
Jacksonville
I am the caregiver to a 43 year old man who was told at the onset that there is no pain with ALS. He is having severe pain in his back, neck and arm. He was diagnosed August of 2005, and I see a quick progression right now. It was slow for sometime, but in the past 2 months I have seen a big difference in his movements. This is the most horrific disease. He was such an active person and now he is unable to feed himself. If you can get your Dad on anti=depresants, it also helps the mind.

Good luck and God speed.
bonmar
 

Cdngirl62

New member
Joined
Sep 9, 2007
Messages
5
Reason
CALS
Country
CA
State
ON
City
Windsor
My husband's pain

Hi everyone,

Yes, it's strange how the pain doesn't affect some and others, it's unbearable. Wayne (my husband) is in pain 24/7 and that is what adds most to his depression. We are getting the pain under control... doctors just gave him Gabipentin for the all-over ache and it is relieving it quite nicely, but now he sleeps...sleeps...sleeps and he is very weak. He too is on 25 mg. of the Fentanyl patch but it has been recommended that he be switched to a morphene patch for break-through pain. At this point, we'll try just about anything when it comes to pain.

So, would I rather have him sleep all the time? Well, its a real toss up - at least when he's sleeping, he's not in pain! So, I guess it's a trade off at this point.

As for adopting... IF I could adopt a little boy for my husband (I've never had children, he has 2 older daughters from his 1st marriage), I would in a heart-beat! You are NOT being selfish at all... your father will LOVE having a grandchild and it will definitely take his mind off of everything!

Wayne is so depressed and tells me almost daily that he just wants to die - he's tired of 'feeling terrible' and that crushes me the most sometimes. I wish he had more to live for - he does have more to live for... he just doesn't realize it sometimes.

L.A.
 

shellshell

Active member
Joined
Apr 11, 2007
Messages
61
Reason
Loved one DX
Country
US
State
Arkansas
City
Scott
Thank you all so much for the replies. This disease affects so many involved and I told my husband I don't feel like I will ever be the same person I was. That may be good in a lot of ways and not so good in many others. I feel like I spend so much time mourning him now while he is still here and I try so hard not to, of course that is only when I am away from my dad, when I am with him I put on my "game face" and act like I am the strongest person there is...but the truth is, I am falling apart at the seams. I just want him healthy again and would do anything I could to make it better for him but there's just nothing that will make it all "better"....

You all are so wonderful and this forum is the best outlet for all of us to be able to vent, grieve, be sad, be happy and all the emotions in between without being judged. Thank you all so much for your support....I will keep you posted on the adoption, we hope to possible have a child in October/November timeframe now....

Love,
Michelle
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
You all are so wonderful and this forum is the best outlet for all of us to be able to vent, grieve, be sad, be happy and all the emotions in between without being judged.

That says it all, Michelle. This forum was started by forward-thinking folks like David and Al, and a large part of the success is due to the group effort of everybody. Anybody who ever reached out to someone in distress should feel proud to read your words.

It is a lucky little baby who will be joining your family! Our best wishes to you all. Cindy
 
Status
Not open for further replies.
Top