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Maynz

New member
Joined
Mar 24, 2010
Messages
2
Reason
PALS
Diagnosis
03/2010
Country
NZ
State
Wellington
City
Wellington
Three weeks since my partner was diagnosed and I'm feeling worse than I was a week ago..........I consider myself a strong person but it seems my usual coping strategies are falling apart and I'm feeling so raw. My partner, who after all, is the one who has to really deal with going through this, is coping better than I am. And our 16 year old daughter has decided its time to have some teenage tantrums and assert her 'adult' rights - which may be partly distracting herself from whats really going on - can't be easy to hear when you are only 16 that your fathers dying. Meanwhile there is still work, school, meals, washing etc. while we somehow all get to grips with this new reality. I'd be interested to hear from anyone else what this time was like for them and their family. Also, if there are any forums for young people who have a parent with MND?
 
Hi, My heart is hurting for you. I know just what you are going through. We all go through it. This is the hardest time of all. It is like a death already.. It hits so hard and unexpected. Takes a good while to get over this part.
Then you just realize the loved one won't die today or tomorrow. We can still have a life and make lots of great memories.. Start living everyday the best you can. Enjoy everyday.. Big Hugs to you and your family, Linda
 
Sos much sympathy and love. I think organisation is important to make life as easy and indeêndent as poss for your husband and at the same time less stress on you. I think getting the balance between caring for him and letting him care for himself is an important one to sort out ASAP. At first my carer jumped up to push the chair, the to do whatever it was I wanted to do FOR me. Waste of his energy and not good for me.
Also, speaking from the other point of view, I have discovered that people around me change things that I organised in a particular way becasuuse they CAN now, while I am handicapped and that really pisses me off. Even my daughter did it while she was here. I organised some washing to dry in MY fash_ion and she came behind and changed it to HER fashion. That is AWFUL and a lesson carers must bear in mind, please..........
Meantime, courage and love have to be the watchwords. And as much lightness as possible.
Love to you
 
My husband was just diagnosed less then a week ago with als and I feel, we both feel raw. I am not sure what it is we need to help ourselves.
 
Maynz
So sorry you have to be here. I want to encourage you to come back often. I have found this to be a very helpful place, full of caring people. Don't kid yourself about your partner being the one going through this; it is happening to you as well. He may be the one with MND but it has, and will continue to have, just as big an impact on your life. Two and a half years ago my youngest daughter was 16 when her mother was diagnosed with ALS so I know what you are going through on that front. We encouraged both my daughters to go to counselling. That along with thier strong faith in a loving God has helped them come to terms things as much as one can. Don't let her get away with trying to be stoic. Encourage her to talk about her feelings and listen long before you speak. She needs to feel you are a safe place to come and openly discuss her thoughts and fears. I am wishing for you nothing but the very best.

Jim
 
For teens try, Als411.ca It is a Canadien site for teens. I have a 15 and 17 yr old, and they did not want to go to the site. My 15 yr old(girl) is acting up a lot too. The stress from her acting out is really bad for my PALS, and telling her that really upsets her, but doesnt change her behavior. Good luck. HUGS Lori
 
Dear Maynz, As I recall, it was about three weeks after the diagnosis that the situation became more real to me. Before that, I was in a chaotic state - ticked off at everyone - God, the doctor, couples who walked together in the street - didn't take much to get me angry. Raw is definitely the word that I used too. Soon after that I began to come to grips with the situation - which doesn't mean that I still don't have my days of "rawness" - but most days I'm able to look the situation straight on and realize that "it is what it is" and I just try to make a bad situation the best that it could be. And other days I'm kind of a mess - and I've now allowed myself to have a mini-crash without guilt - just not for more that a few minutes! (it's been 4 and a half months since my husband's diagnosis). My heart-felt best wishes to you and prayers to go with the wishes. Although I don't come on the site as often as I'd like, it is soooo comforting to know that the folks on this forum as so genuinely supportive all the time. God bless.
 
i am a strong person myself but , when i found out my son has als i also found out where my weakness is , searching anywhere and everywhere , i believed there had to be something somewhere , but , this site is my sanity without it i don't think i could handle it ..i kept hearing enjoy what time you have left with him , ... i am trying that but in the back of my mind i am constantly hopeing for that miracle and checking everyday to see if it is here yet .i have 4 grown kid's 14 grandchildren , am i have been a foster mother almost 10 years now 4 all teen girl's ...yes i did not learn lol , you just keep strong in the way you are raising them they do get easier to handle when a few thing's happen that you told them will go that way ... the hardest time usually is age 15 to 16 ... that's WHEN THEY START TO LEARN ABOUT BECOMMING ... an adult and to have a bomb like this dropped on you at this age will be more difficult in there eyes they are think that wont happen to my dad he is too big and strong but , see will see things more and more then she will see the truth of this disease ... i made this too long .. you can ask anything on this form ... wishing you the best of luck.you are entitled to feel and deal any way you need to
 
Maynz and Dragonfly ~ Welcome to the forum. You have come to the right place for help and comfort. On days when you feel like you're the only one going through this pain, guilt, anxiety, etc., there is always someone here willing to share their words of wisdom, compassion and humor.

I learned from this site that what we all feel in the beginning and throughout this disease is "anticipatory grief" along with a whole of other emotions. Eric was diagnosed 2 years ago and it seems like every time he loses a function we go back to the first few weeks after diagnosis, and then we find something to laugh about and pick ourselves back up and get on with life again.

In the beginning, I would cry all the way to work and then all the way home. I finally remembered what a therapist told me years earlier when another life altering moment happend to me and it worked again. It may or may not help others, but it worked for me so I'll pass it along. She told me to allow myself 5 times a day for 15 minutes to think about the event (disease in this case), feel it, express it and then put the thoughts in an imaginary trash can. Every few days, reduce the times of day until your thoughts, grief, anger, etc are more under your control again. This really helped me tremendously to be able to cope and function in my daily life after the diagnosis, as I felt like I was frozen, numb and obsessed with this disease. I hope this helps.

I also decided to let Eric set the tone of how we were going to deal with this and so far that has worked well. He's amazing and puts everyone at ease. He's always been the class clown, so humor has gotten us through a lot. He has his down days, but for the most part, he's his "old" self. :)

My best to you both and your families.
 
Dear Pam B in Va
Thanks for your very real response. I love your illustration of the trash can and I will share it with my family. I guess I feel very overwhelmed, uneducated, and scared. I am also having a hard time processing everyones reaction. Which varies greatly.
 
Dragonfly, Were was your husband diagnosed. A ton of us from PA. on here..
 
Sweetheart, it is horrible. But it is a fact. Most important lesson in life is not to waste energy and emotion on things you cannot change. You just have to accept the unchangeable and use all your energy on what you CAN do. And what you CAN do is make life as organised to be easy as possible and to give him as much independence and autonomy as possible. Be prepared and a step ahead of the enemy all the time. Take things as lightly as you possibly can. It is grave, it is enormous, it is hateful, but it is there. Don't let it destroy more than it is already going to do. Pretend it is a person and don't give it the satisfaction of letting it beat you down. Laugh in its face.
It is hard. It is horrible. You cannot beat it but you can live gently, happily, lightly, courageously, lovingly and you will make new discoveries along the way. There is no point in crying every day. What value has a life of tears? I do not have any hope, but I DO have fun.
I send you loads and loads of love and courage
Irismarie
 
Hi Dragonfly ~ You are very welcome. You will soon find a new "normal" life as a family. You will also learn to concentrate on living and push the dying part somewhat to the back burner. There is a lot of life left to live. Someone on here once said that they looked at this disease as a chronic disease like MS or diabetes. That was an eye opener for me and I was able to release the dying part from the forefront of my mind. I shared that information with Eric and he also had an "a ha" moment and felt much better too and started making plans again... vacations, golf with friends, poker nights, etc.

I hope your husband's progression is the slow type, as is my husband's. It is bittersweet, because it allows us the time to concentrate on ourselves and family which are the most important to us and make wonderful memories that we otherwise may not do right now if we thought we were going to live to be 100. We were definitley living in the fast lane and taking life for granted. Several friends haven't had this knowledge of time is of essence and lost their loved ones in car accidents or heart attacks and then it was too late to make life together a priority.

I'm not trying to candy coat things, it is tough. I just want you to know that there is some time to enjoy and try not to let too much slip away with sadness and anxiety. Our motto is now to live without any regrets.

Hang in there, we're all in this together and help each other on tough days on this site. There are a few comedians on here who truly make me chuckle when I thought I couldn't smile again. A great group of people here. You've come to the right place just as I did a couple of years ago.

Take care.
 
Hoping
He was diagnosed through The Neurology Group -Abington Hospital. We are sch. to see a Dr. Elman with Penn Medicine in Philadelphia on the 21st of this month. Dragonfly
 
May & dragonfly-

I am so sorry that you had to find us here, but as you can see we do understand what & how you are feeling.

Pam's posts & advice to you are great- I agree completely.
I would also say, if you haven't already, to register with the ALS Association & the MDA Association. You will find lots of info on their websites, as well as an opportunity to request pamphlets & newsletters to help you understand ALS as well as manage the symptoms. You can find them at: Welcome - The ALS Association and Welcome to MDA-ALS Division, Helping Jerry's Kids

dragonfly-

We are just outside of Philadelphia, and my husband goes to the clinic at Penn. He sees Dr. McCluskey, but I know Dr. Elman as well and she is lovely. You will find the staff there to be very helpful & compassionate.
If you have any questions, or if I can help in any way, please let me know.
 
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