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cradford

New member
Joined
Nov 20, 2008
Messages
1
Reason
Lost a loved one
Country
CA
State
Ontario
City
Ottawa
Hi my name is Carl Radford. For me this has been a long time coming. I was 9 I believe when my father was diagnosed with ALS. At first I did not understand what was going on. I noticed though that for about 4 months before he was diagnosed he had lost the ability to really move his head very much, and he was always looking down. It was not until his lung collapsed and he was admitted to the hospital permantley, that it really started setting in. The next 4 years were hell for me. I remember at one point a misinformed doctor had told my stepmom and my dad that he was getting better and that he would be out in a couple of weeks maybe a month tops, only to have a doctor tell them and then me that this was simply not the case and that this disease was fatal. Watching my father waste away to almost nothing is something I cannot describe in words. I was only a child watching this but it still effected me alot. Sadly the older I get the more I miss having my father in my life and a good male role model. The drain on me was one thing, but the for the rest of my family who were much older then I and thus able to understand what was goin on better it was devastating. My mother felt terrible knowing that I was loosing my father at such a young age, my step mother who my dad had reunited with b4 being diagnosed or even showing symptoms was always taking care of him. She literally would work all day go to the hospital until visiting hours were over, then go home to sleep and start the day all over again. My fathers family who live in the US would frequently make trips up to come see him. This disease not only sucked the life out of my dad slowly but watching him die sucked the life out of all those who loved him. Sadly my stepmother who had, had cancer before but was in remission was diagnosed with it while my father was still living a passed away a year later. When my father passed away I was 13. I can remember my mother telling me and I did not even know what to feel. At that age I understood what had happened but it was almost like I had shut down and detached emotionally a couple of years before. The older I get as I said before the more I miss him. For me though I ask people that new him well about him and try and re-live the positive memories I have about him. He was a very warm man. He was involved in social activism from an early age and had the privaledge to march with men like Martin Luther King jr and Jesse Jackson. He was a peace activist and believed in racial equality. I am 21 years old now and am in my second year of university at carleton in Ottawa, eventhough it has been 8 years since he passed away and nine since my stepmother passed the memories seem very vivid and the pain can still seem so raw. I am writing this one because I cannot sleep and two because I have never wrote about this part of my life in a open forum, in a wierd sense I felt guilt and shame about it like I was totally alone in this pain. I think its time I do more then just visit thier gravesite, I figure I should start talking about, this seems like a good first step, hen maybe one day ill join a group and meet face to face with people or seek one on one counselling anyone who has a suggestion or would like to talk is more then welcome to reply to this I am grateful a site like this exists
 

lostinlouisville

Distinguished member
Joined
May 10, 2008
Messages
242
Reason
Other
Country
US
State
ky.
City
louisville
I am sorry about your Dad and Step mom, that had to be so hard at such a young age. I want you to know if you need to talk feel free, I am glad you are taking this first step, it is real important that you do this. I am just a person who Googled symptoms and ended up here, I have no Dx. but love the people here and want to help in anyway I can. I think you will find a lot of support here. Your so young and I think you can get past the pain and maybe even be active in the fight against ALS, Wouldn't your Dad be proud of his activist son.lol. Take care and I look forward to hearing from you.

Renee
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
You just took an amazing first step in healing your pain and you should be very proud. What you went through is so extreme and to go through it at such a young age is totally unfair. You were forced to confront situations way beyond your emotional capabilities as a child. I would highly recommend you look up grief counseling groups in your area. One of my very best friends lost both her sister and her father last spring. They died just 5 days apart and she attends a grief counseling group every Wednesday night here in Montreal. I am sure there are similar groups in Ottawa.

I am so sorry for what you lived through and I sincerely hope you get over any of the guilt or shame you feel. Acknowledge the fact that you are a smart guy, in university, obviously in touch with your own feelings and mature beyond your years. Hang in there! You are not alone. There is so much tremendous support here on this forum.
 

dottie

New member
Joined
Oct 30, 2008
Messages
5
Reason
Loved one DX
Diagnosis
11/2005
Country
US
State
mass
City
revere
i lost my father to the disease

hi carl so sry for your pain, my husband also has als,been 3 yrs now and the worst part of disease is to watch the you love waste away, so sry you was so young to go throw this, wish i had the right words to type, im sure your father is at peace and very happy were he is now , and would want you allso to find peace and healing, i will pray for you.sry again for life at times can be cruel. but we must go with it and learnwhat we can from we life expercience. tc of yourself, dottie ps this is my first time writing,
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Dottie and Carl and welcome to the forum.

Carl- you lost an important person at a developmentally crucial time in your life. I am glad you are reaching out as these things take time and lots of support.

Dottie- glad you decided to join us.

Keep in touch, both of you. This is a great bunch of folks around here and every question, topic or feeling is treated with respect. Take care, Cindy
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Carl,

You have had several crisis in your life at such a very tender age. You sound very level headed in spite or despite what you have been through. I'm not sure why you feel guilt and shame... you were a child and coped the only way you knew how. This is a great place to open up and write or sit back and read. There are so many helpful people and honest posts on this forum. You are still at a tender age... many of us adults don't actually deal with things until much later in life... some of us never manage to deal at all so I think you are doing a great job by expressing and reaching out.

Paula.
 

dottie

New member
Joined
Oct 30, 2008
Messages
5
Reason
Loved one DX
Diagnosis
11/2005
Country
US
State
mass
City
revere
ty, paula i find the forums so helpfull to so many questions i have, there is so much strenght and courage, and nice to no people reach out to eachother. my prayers are with you all dottie,
 

Debbie53

Active member
Joined
Aug 16, 2008
Messages
86
Reason
Lost a loved one
Country
US
State
Colorado
City
Greeley
Carl,

I also lost my father to this disease, a month ago today, in fact. Watching him waste away was absolute torture, and I am much older than you even now. I can't imagine having to do it as a child. One of the worst parts was that no one (medical) seemed to really understand what was going on. I still wish I had more answers.

Hang in there! Probably an in-person support group would be good, but there are amazing people here too.

Debbie
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Carl,
Your story is so amazing. Coming here to tell your story is probably the best thing you could have done.
Watching your loved one waste away and being robbed of their life is the cruelest experience. Having experienced as a child the wasting away of your father and not fully understanding what was going on must have been devastating. Interacting with your friends and in school as all this was occurring must have made you feel isolated and alone. And then to also lose your step-mother on top of what you were already going through is so tragic.
You obviously have done alot of thinking about it. I hope you will continue to post your thoughts here and get them out in the open. The understanding you will find here is unbelievable. The people here have seen and are experiencing so much themselves and have hearts of gold and are the best of listeners. Many of the people here are young like yourself.
Blessings to you, Carl, and peace as you continue to struggle to contemplate all that you have experienced and lost.
Jane
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Carl, I read your post very carefully and my heart goes out to you. My dad died with MS when I was 12, so I can relate. He was in a great deal of pain and was emaciated. You have taken a very good step in healing your emotions by pouring out your heart here. You have found the right place for great friends. God bless. M
 

Meggers

New member
Joined
Dec 23, 2008
Messages
6
Reason
PALS
Diagnosis
11/2008
Country
US
State
CA
City
Lake Forest
Hi Carl,

I am 25 years old and I had lost my father to ALS when I was 6. He was diagnosed and passed away within 6 months. There is really nothing that I can say that will make you feel better. I can only share the feelings I have had. Not having my father there to watch me go off to prom, have a first boyfriend or walk me down the aisle at my wedding. Those are the things I mourn the most. I wish my father could hug me and play with me when I was younger. I know my father still lives in the sense that I am just like him and remind everyone around me of my father. Last month I too was diagnosed with ALS. I watched two of my uncles pass away from this disease. I am in a world of worry and anger. I got on this forum to talk to someone my age being affected by this disease. Best wishes.

-Meggers
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
City
saratoga springs
Carl,
Your story really touched home for me...my boys are 5 and 7 and there dad is 42 suffering with ALS. Our 5 year old really never remembers his Dad walking..and talking normal. Our 7 year definitely remembers the better days. We are trying to create a new normal..but as you know there is nothing normal about living with ALS. If you have any advice for parents with little guys..we would appreciate it from your point of view. Thanks..and Happy Holidays. KR
 

Meggers

New member
Joined
Dec 23, 2008
Messages
6
Reason
PALS
Diagnosis
11/2008
Country
US
State
CA
City
Lake Forest
Kelly-

I was six when my father passed and I remember him very well. He would always spend time with us and video tape the time we spent together, (even when he wasn't moving). He made up a song called "paralyzed man" that we would sing. My dad was so silly. He recorded a tape to wish me happy birthday for when I turned 16 and bought a peice of jewelry for my mom to give me on my 16th birthday. Even though he wasn't moving, he found many ways to keep smiles on my and my brother's face and create memories. I don't remember any sad times when my father had this disease, only happy times. It may not be normal for you, but growing up it felt normal to me.

If I can share anything else please let me know.

-Megan

Dx 11/12/2008
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Megan,
Hi and welcome, I had a golden retreiver named Megan, I loved the name, I called her Megger's, I have a habit of naming my pet's pretty and cool people names. I admire your courage and strength, you will be a asset and a friend on this forum.
We have some other young member's, and some young Cals, and family. I feel like good things keep coming. I pray that you will be the last Pals in your family, and will be the one see's a cure, I believe in my heart that Familial ALS will be the reason we get a cure, so it is with the deepest truth that I feel with you we have hope.
Welcome again, please join us often..
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Goodness me, I wanted to thank Joel C, for he has given me a new found hope for life in the future, he has given me a new found light.. thank you..
 
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