New to this and looking for friends who understand...

[ceegee]

Such Joy/Such Sorrow

Hi Amanda,

I to can relate to you as well. I gave birth to my first child in late june and 1 month later my mother who is my rock was diagnosed with this merciless disease. Its funny how GOD works. I guess God gave me my son so my mom could cope with this disease watching her grandson grow. I to felt like my whole life was pulled from under me. My mom 6 months ago was walking and now unfortunatley, she can barely move her legs. she lives around the corner from me which isn't too bad. i still work so i have a woman sit with her all day until i come home. Eventually she will have to move in with me.

I don't share too often but i think i should because its comforting to know that someone else is dealing with all the emotions i am. please feel free to email me anytime on this site. It will be nice to find friends who can relate. god bless your mom and your new baby. take care. Ceegee.

 

[Jeannie]

Dear Amanda,
I am sorry that you and your family are going through this. You sound like you have an amazing relationship with your father and family. i believe that Captian Al is right, there is a song, I am sure you are familiar with it and I am not sure who sings it but it is SAY WHAT YOU NEED TO SAY. It is so important both to you and your father.
Your journey will be difficult but rewarding too and will make both of your lives richer for it.
You and your family are im my thoughts and prayers
In friendship
Jeannie

 

[perplexed]

So sorry, Thelma, didn't see your response

Hi Thelma,
Some updates on my husband, but nothing definitive. He had a second single-fiber EMG at the Neuro - it and the nerve conduction study were normal. Babinski normal. The different doctors this time did full neuro work-ups and said that "currently, he doesn't have the criteria for ALS." Clearly, this doesn't help much as things can change at any time, right?!

What I don't understand is why the first doctor (head of the clinic at the MNI) said what he had was "one of three things - ALS/myasthenia/a myopathy" when these different doctors last week said there are many things he could have that mirror ALS symptoms. (What he has is swallowing issues - on soupy stuff only now and meals in a can, saliva and phlegm pooling - lots of spitting - no weakness or atrophy).

I understand that while we want answers, I think doctors should keep their mouths shut until they know....

Cheers, enjoy our tropical (relative to last week) weather,
Erica

 

[amanda55]

Thank you all for your support! We have moved back home and praise God, so far things have been going pretty well living with my in-laws. I spend the night with my family at least once a week and we visit often. I visited a support group last week for the Cincinnati area, and that helped so much! I was able to get all sorts of information and have a lot of reading to do. We are visiting the Cleveland Clinic to do more testing for my father in Feb.

Emotions are still running high all the time, and I am realizing that my mother and brother are not really able to be there for me. Not that they dont want to be, they just cant handle everything happening right now, and I have to be the rock. That was always my dad's job, but I will gladly bear the burden for them and him now. He is my number one priority right now.

Do you all visit support groups too? How about individual counseling? What has your experience been? I think seeing somebody could be really good for me right now.

God bless you all!

 

[thelma313]

Amanda- good for you for joining a support group so quickly. I am a big supporter of getting whatever help you can get. If you can afford individual therapy, you should go for it. As for being the family's rock, don't forget to treat yourself well and don't forget you will have needs too and need support as well. Too often the family caretaker is self-sacrificing and puts themselves last. Be good to yourself!

Perplexed, I think the news on your husband sounds encouraging. I am no medical expert but we never heard along the way that my dad does not have ALS. Actually our experience was the opposite of yours. The doctor never mentioned ALS at all. He talked about MG and Bells Palsy so the final diagnosis really shook us to our knees. I will keep you and your husband in my thoughts and hope that he does not have ALS! Hang in there! Stay warm! Luckily my parents are in Florida and safe from this brutal January we're having. All the best!

 

[lovinglife]

Hi there

Unfortunately I too understand what you are going through. I think it is great that you are moving back home to take care of your dad. I wish I could do the same. But my mom is still working (her true passion)- so for now we are dealing with this long distance. My mom has Bulbar ALS (gosh almost for 1 year now) and I live 10 hours away and it is so hard. My mom and I used to talk on the phone every single day, but now not so much. I think I"m the only person left who can understand what is left of her voice. I joke that I'm proficient in toddler speak, but really its because my mom and I can complete each others thoughts. This is a horrible disease and it is hard not to get sucked down by it. My family keeps me very busy so I don't have alot of down time, but I've been known to cry in the shower. The people on this forum are so nice and the PALS so upbeat. So it helps me keep my chin up and just focus on one day at a time. Enjoy your time with your dad. Prayers to your family.

 

[stgeorge]

I really need this forum. We have been living with ALS for 2 years. My husband,51, was diagnosed 10/07, but symptoms started 2/07. He has Bulbar ALS. He has lost use of all limbs, speech, eating(we have a feeding tube). I am sole caregiver and desperately need someone to talk with. We have been married 28 years and I love my husband to the infinite! I am and will give him everything I possibly can. I know I can deal with the physical side of this disease I just need emotional support, there is no one I can talk with. We have very loving and supportive family and friends We live in a small town and I do not feel comfortable talking to anyone here about the daily anxieties and I don't want to take anything for my emotional stability. My husband and I talk about everything. All of this has happened so fast. I just need to talk!

 

[ktmj]

stgeorge, sorry about your husbands situation but glad you came here. You will find a lot of support here at this site.

I am very familiar with Sandersville. I hunt in Washington Co. and we go to Sandersville quite often. I love that part of Georgia, but love home too!:lol:

 

[lovinglife]

StGeorge hang in there

What you do day in and day out is amazing, but you need to take care of yourself too. I'm glad you have family and friends nearby. Even if you don't want to talk about your daily concerns with ALS it is good to have a diversion. And sometimes it is easier and feels safer just to talk to random strangers. I hope you find the support you need. I hate to read that your husband has progressed so much as my Mom has Bulbar ALS and I was so hoping it would stabilize with her voice and not move into her limbs. But unfortunately it is migrating and she seems to be losing fine motor in her left hand. Her coping skills are incredible so I try to stay upbeat for her. But it is so hard. I believe in miracles- and that incredible mind that will find a cure to this disease. I try to find a positive outlet- although that gets harder to do with each new progression. But just small simple happy moments seem to help. Take care!

 

[topsfan]

Amanda, mother is 70 and was just diagnosed this week. She does not want to do any tubes or breathing devices either. I feel selfish in agreeing with her decision as I know it will bring the end faster for her.
I keep reading on the posts that there truly are no "stages" of the disease, yet so many will post about their loved one being in "final stages". I have so many questions, yet so unsure of what even to ask at this point. How can we tell how far along in the process?

 

[mndireland]

Hi Al, Im just wondering about your advice, to talk about the disease and its affects now. My family and my mom are so different to some others, I love my mum very much but we have never really been an affectionate family. She would step up and do anything I ask, if Im in trouble she will always sort it out, lend money, give advice etc but we never hug, kiss or say I love you. My dad died 28yrs ago, my mum was in her 30's and had 4 young kids, I think she remained very bitter for a long time, and took us on more of a duty than a family in some ways.... Not a bad thing, was just a provider, went to work full time to get us what we needed but no hugs at bedtime kinda thing.
I never noticed it until she got sick, and now I dont know what to do, I do kiss her at christmas and birthdays when giving cards, but its not an everyday thing.

The thing is, even though I want to do it now, Should i? Would it not frighten her into thinking her time is coming? I dont want her to know that everynight I pray, and cry before sleeping, and if I try to talk to her, I just know I wont be able to hold it together. My mum never likes speaking to the doctors, from the first diagnosed, she knew what it was, but she just said to the docs, I dont want to know anymore, I dont want to know whats coming... So really I dont want to scare her.

She's starting to talk more about dying now, saying she is fed up like she is and she hopes God takes her soon, I dont want to get all morbid with her either? I have no idea how I should start talking to her more about it?

 

[brooksea]

mndireland-

Go for it! Talk to you mother about how much you love her before it is too late!

I grew up in a very strict military family where affection was non-existent and criticism was the rule. It was not until I was in my thrties that I was able to have a conversation with my father about it. That's when our relationship changed for the better and I found out some things about my dad that explained a lot of things.

You never know, your mom may be thinking that she wished you would be open with her and give her the hugs she deserves.

 

[mndireland]

Thanks Jimercat, Ive been trying to stick in few comments, just little remarks showing affection, I have no doubt that she knows how I feel about it, its just affection thats the difficult bit. She does make me laugh sometimes... I am due to get married next year, and she told me a few days ago, these are her words not mine, " You would want to get married quick before I snuff it, cos otherwise you'll spend the whole day crying without me there, cos you love your mother and it wouldnt be the same"
Ha, I wouldnt want to be letting things upset me would I? :lol:

 

[MtPockets]

A good example of what I have been talking about happened just yesterday. My grandson was home for the weekend from college and decided to stop by for a visit while his mother went shopping. He spent his time sharing with me about his new college life. These are precious moments to me. He could have chosen to go shopping for things he needed for college, for himself, but instead chose to spend some time with his Gramps. This was so special to me.
I get VERY few visitors. Thank God he thought of me. I needed that so much.
It is so very easy to get caught up in your own life and the busyness of things that we forget others and their needs. Show some love this week by spending some time with a loved one that needs your visit, and your love. You will be blessed for it.

 

[rhiwoman]

Amanda, you probably aren't reading this anymore but just in case I wanted to say that I am right there with you. I have two children, one born before mom was sick (now 3.5yrs) and one born in May, 4 months after she was diagnosed. We knew mom was sick though and considered waiting to have a second child because of it but now that I see the joy my 9 months old brings her I no longer feel selfish for having a second at this time. We moved cross country to live near my family. It is incredibly difficult to establish yourself in a new area when you spend all your time caring for a parent and a little one (or two). But kids open many doors for connecting and once mom is gone I plan to enroll my son in preschool, join the church mom's group, etc. One thing that has been really painful for me is watching my baby flourish while my mom wilts. I brought my daughter home to see mom when she was 3 weeks old. My newborn slept on mom chest unable to control her small limbs. At that time mom had some use of one arm and could gently support my daughter. My mom said that my daughter would become able bodied and independent as she became more helpless. Now my daughter is strong, pulling up, crawling, babbling away and mom is limp. Mom can no longer support her own head in most positions and her voice is weak. But her eyes still sparkle when she sees her granddaughter. And though she can't wave back Mom delights in my daughters baby wave and "hi". Although it is hard to care for an infant and a parent I think it is in some ways easier than having an older child around. My 3 year old is very aware of my mom's condition, my baby thinks nothing of it and provides unlimited carefree smiles. Hang in there!