In shock

[Iris32]

My mum has just been diagnosed with MND and I can't believe it. It just doesn't seem real when I say it. I have been reading some of the other threads and I am so scared of what lies ahead for her. Why has she got this awful disease at 63 when she has so much to live for???

[Blackpool]

Hi Iris,I am 63years old also, I can't answer your question why. It is devastating to all members of the family, please treasure everyday with your Mum. Peace be with you.

[Iris32]

I want to spend every minute of the day with mum but I just get so upset that I feel this isn't helping her at all. She is being so brave and all I feel is complete anger, it's just so unfair.

[Gelthling]

It takes a few months from the initial shock from diagnosis, my mum was diagnosed back in March, and it was only a month ago that I could start talking about it all without crying. Just be there for your mum - she will understand that you are also upset. Once the initial shock calms down, you'll get in and try to work out the best way to handle things.

[thelma313]

Iris, I'm so sorry about your mother's diagnosis. It took me a while to get over that shock too and I felt very very angry like you do about my dad's diagnosis. The shock eventually wore off and I gained so much strength in dealing with this horrid disease. The anger ebbs and flows. Today I feel like punching something or smashing a car in with a sledge hammer. That would be good! I wouldn't want to wreck an innocent bystander's car though.

I'm glad you found this forum. There are lots of really amazing people here who will offer you so much support, wisdom, insight and even humor.

[Katie C]

Ohhhhhhhhh... the sledgehammer idea sounds so good!! Maybe people could donate their old cars to clinics, and they could have "Hammer Time" (sorry, couldn't resist) for the caregivers while their PALS were in clinic!?

[tdamess]

a feeling i have not noticed yet and i know other's must feel the same way is eveny- when i see a man my son's age or hight and weight while i am sitting in the car as they are moving about ...i think why was it not him , why my son, i am so full of enevy and anger, i know it's not right to wish it on someone else but, i can't help it and i don't think time will help that feeling

[shelleynshaggy]

Iris-
The shock is so horrible. Glad you found this site. I know exactly what you mean about learning about what lies ahead. I watch my kids and husband and the emotion just overwhelms me. Most days I am doing better. However, I was driving from work today and saw a sign for Cedar Point (amusement park) and started to cry - no apparent reason. Just the whole thought of wanting to go and having no idea how much longer Jim can continue to go - all kinds of thoughts like that just came rushing in! Luckily, my mom called just it time and "talked me down"

[Zaphoon]

It helps to get over the shock phase as quickly as possible and on to the everyday living phase. The sooner things can be brought back to a daily norm (and you have to shift with change as it comes), the better.

It totally shatters me to see one of my kids tear up when they see me having a difficult time. I try very hard to be "normal" around them.

Zaphoon

(Tomorrow hasn't come yet and I'm not ready for it until it comes!)

[shelleynshaggy]

Also, I found it useful to visit my own doctor - he prescribed an anti-depressent and Xanax for "those moments" when I just can't keep it together (also has helped the moments where you are just mad at the world.)

Katie - our ALS chapter actually suggests the car-smashing idea for a fund raiser!

[Katie C]

Shelley, I love it. It occurs to me that MC Hammer lives in Tracey, which would be within the boundries of our chapter. Wonder if we could get him to sponsor something. If you have any info from your chapter's idea, could you e-mail it to me?

[Iris32]

Thanks for the support. So far I have only smashed small items around the house, I am fine then all of a sudden I throw a mug at the wall. And I am constantly having the same feelings as you tdamess. I am looking at everyone my mum's age and I want to shout at them and ask why the hell isn't them instead!

[GlenBrittle]

Ohhhhhhhhh... the sledgehammer idea sounds so good!! Maybe people could donate their old cars to clinics, and they could have "Hammer Time" (sorry, couldn't resist) for the caregivers while their PALS were in clinic!?

picture this :

Rosella walking towards a car with a sledge hammer.

The car doing a sideways shuffle, while the radio is blaring :
daa da dah , da dah , da dah "Cant touch this"
daa da dah , da dah , da dah "Cant touch this"

[thelma313]

Oh Glen! You are too much. ;)

[tdamess]

glen you are bad lol

[indigosd]

GLEN-You are so FUNNY!!!

[Blackpool]

Glen you are a wonderful relief,

[Katie C]

Glen thanks for a much needed totally laugh out loud moment!!

[Iris32]

Yeah thanks for making me smile Glen. It doesn't seem to happen very often at the moment.

[BarryG]

Rosella with a sledgehammer? That is something I've gotta see!!! I have a 1988 chevy caprice in my yard (If you are mowing your grass and find a chevy you just might be a redneck) that she could start on. Or maybe she wants to squash her bug? :)

[thelma313]

I have wanted to squash my bug this summer. It's 8 years old and has been working fine since I bought it 3 years ago but in the last 3 months I have brought it in to the mechanic 6 times!!!!! I have spent over $1200 on it because no one could figure out what was wrong with it. Finally I met a mechanic who is honest and knows a lot about German cars so (cross your fingers) it seems to be working fine now. But let me say, my patience was stretched to its very limits. I actually would have preferred to smash the original mechanic's car and not my cute Beetle. When trying to deal with my dad's condition, having this pesky car trouble was enough to "drive" me over the edge. (Bad pun I know) So I am embarrassed to admit it but I have lost my cool a couple of times!!! Everyone, keep your cars and sledgehammers safely hidden from me!:twisted:

[Zaphoon]

Thelma,

Your honesty is always a breath of fresh air!

Thanks for putting a smile on my face!:)

PZ

[thelma313]

Aw, PZ, your smile is worth a thousand Beetles! :)

[Zaphoon]

Awe, shucks, Thelma - you made me blush:-D

PZ

[KeeKer]

Rosella, I think I could join you in the sledgehammer dance!! My car first.

[Iris32]

So the week is getting worse, not only I am struggling to come to terms with my mum's diagnosis and thinking about her day and night, I now find out that her grandfather died of MND. Mum's parents died very young. So after hours of looking on the internet, could it be that my sisters and I all have a 50% chance of having the gene that can cause MND? Oh my god, I don't think I can take anymore??!!!

[brooksea]

Sorry to hear that iris32! Sounds like you may need some help coping with all this. As suggested, antidepressants can be a good start.

Can you get tested for the gene?

[Iris32]

I want to get to tested for the gene but my husband is totally against it. If I don't get tested I know I will worry about every ache and pain for the rest of my life. And If I was to find out that I had the gene then it might affect my decision on whether to have kids. I just don't know.....

[brooksea]

Sorry Iris. I cannot imagine what you must be going through. :cry:

Since this thread has gone off on a little tangent, I will put my two cents in.

You can always adopt or have in vitro with donated egg. I know it's easier said than done.

My husband and I adopted our son when he was an infant from a lady that had already given up a teenaged child years before to her own mother. The mother was unwilling to take on another grandchild and this baby would have gone into the system. Who knows what would have happened to his life. We chose to adopt him (and that was no walk in the park dealing with that lady and her family) and now my husband has this insidious disease. But...we would not do anything different, even if we knew that ALS would be waiting for my husband in his late forties. You can't take away the love shared between a child and his parents.

Perhaps when the shock of all this wears off, you will be able to think more clearly about options for yourself and your mother. I hope your mom is able to enjoy her time with you and her family as much as possible.

[Iris32]

Thank you brooksea for your support. I have real highs and lows, I started the day off trying to be positive for my mum and now I feel like my whole world is falling apart. This time a month ago my family was just so happy and had everything to live for and now it just couldn't be so different!

My husband and I have thought about adoption before now but I'm scared that I will not feel the same bond. But then if we were to have a child naturally then I would be feel so guilty if I passed this awful disease onto them!

And now I feel so guilty for focusing on my own life and not my mum's!

[thelma313]

Iris, my heart goes out to you. I certainly hope that you are not carrying this gene. Does your mother know of any other family members besides herself and her grandfather who have had or still have MND? Familial ALS usually strikes many many times and most families who carry the gene can name several relatives who have had it. I'm just thinking (and I'm not a medical professional) but perhaps this was just an unhappy coincidence? It seems your chances are good, if it's only the two family members.

I would definitely take CJ's advice and get some help. In addition to anitdepressants I think you would benefit greatly from one on one counselling with a good therapist. My heart really goes out to you.

As far as bonding with an adopted child one of my very very best friends adopted a 5 year-old girl and let me tell you, she could not be more bonded to that child. Another friend of mine who had a baby naturally said to me, "I understand adoption now because I gave birth. I thought that by having a baby biologically the relationship would be instantaneous but it took a couple of months of bonding before a solid relationship was really formed." Whether the baby comes from you or somewhere else you still have to get to know each other. It is my intention to adopt as well. I know it is the right thing for me. I look at it this way: there is a child out there who is destined to be mine, whether he or she comes from me or the forces of the universe bring us together, it doesn't matter. It's just part of the grand scheme.

All the best to you...
Rosella

[mare]

You are still in that period where you have so many emotions going on; it is overwhelming. One month is not long enough to process all of this.
Please be easier on yourself; you are not selfish for thinking about these things. That is one of the problems with this disease- it doesn't just effect the PALS, but the whole family in many ways.

You are only human- be patient & give yourself time. You don't have to make any decisions right now. In fact, it is best NOT to make any big decision now.

For now, I would suggest educating yourself as much as possible with info from alsa & mda. That will be empowering; the more you know, the less scary it becomes. (sort of)

And you will find lots of info here- don't be a stranger!


p.s. CJ, that was a lovely post!

[BarryG]

Rosella, however it happens I know that you would be the world's best mom!!:-D

[thelma313]

Aw Barry, that is the nicest thing you ever said to me. I am all welled up. You are a prince among men. :)

[GlenBrittle]

Rosella, however it happens I know that you would be the world's best mom!!:-D

OMG ... going for the suck-up crown are we Barry ?

Glen

[GlenBrittle]

Iris,

You should not feel guilty , as you had no way that this was going to happen. If you had spent more time , it would have happened just the same.

The past is history , something to cherish. What you need to focus on is the future, making the most of every day. Even if its a kind thought or a small prayer , make it positive.

It does get easier .

Glen

[BarryG]

Just telling the truth as I see it Glen! :D

[GlenBrittle]

Yes , I will agree with you on this one.

The way she tries to care for her father shows the makings of a great mom. Adoption is saving a child from the uglier side of life.

Glen

[thelma313]

I love you guys! :)

[Blackpool]

Both of my children where born in my heart not under it, I have to be reminded that they are adopted.

[tdamess]

there are many kids who need a home, i am a foster parent of 4 teen girls one mother died of cancer ,another kids parents were murdered they are great kids , i have them for 3 and 4 yrs now they are almost like my own ..... not being mean but they were teens when i got them.....the other 2 just need to learn there is no place like home so, even if you don't adopt you can be a foster parent to some one who just needs a place till thier life get's on the right track,or be the parent they don't have..... in time not now as you are not ready for that step it is only something to think about when it is time....best of luck

[trying to stay positive]

I agree with everyone on the adoption issue. I adopted my daughter when she was three days old.
She is sixteen now.
It is funny, people will not only tell us how we sound alike over the phone, but that she looks like me too.
Huh? Look at my avatar! LOL

[brooksea]

"Both of my children where born in my heart not under it"

I will remember that always! How very sweet...how very true!

Thanks Blackpool!