Introductions requested

[TBear]

... just friendly guys! I think we're the only guys on this site... and Merlot is just the jumping off point! Outside of the three of us (I think) and since we lost John. We are definitely testosterone challenged here... (or estrogen overloaded!). Not that I mind... with three daughters (even the dog is female... or at least she was before the surgery) I'm kind of used to it.

Gisele, anyone from Calgary who can find a way to be with an ALS victim in Ottawa on a regular basis deserves my admiration... even if he is related!

In the mean time I'm leafing through back issues of SI swim suit editions... looking for Giselle (AKA Carol) and dreaming of red, stringed bikinis... did anybody see summer leave?

I suspect that Fisher is back out on the deck in the sun... with his blushin' bride! Hope everybody's enjoyed the weekend.

T.

 

[sahajmarg]

Hi All,

My brother was just diagnosed with ALS. I'm still processing and grieving. Going to my first ALS meeting tomorrow where I will be looking for ways I can support him on his journey.

I live in B.C. and have a son just starting college. I'm 58.

It's very nice to meet you all.

 

[sisterofl]

thanks T-Bear. I wouldn't have it anyother way. He is my big brother (the only brother I have).

by the way, Merlot is my favorite kind of wine...

Marianne,
Welcome to this site. You'll find a lot of support here. I have just started posting, although I had been reading the "posts" for a while now. This group is amazing...

Gisèle

 

[bear2]

Someone sent this to me yesterday and it really touched me. I wasn't sure where to post it but it seems as though everyone is coming to this thread eventually - so here goes:

Prayer is one of the best free gifts we receive.

I asked God for water, He gave me an ocean.

I asked God for a flower, He gave me a garden.

I asked God for a friend, He gave me all of YOU...

If God brings you to it, He will bring you through it.

Happy moments, praise God. Difficult moments, seek God.

Quiet moments, worship God. Painful moments, trust God.

Every moment, thank God.


Thank you all for being here - knowing one is not alone is a blessing in itself!

Hope everyone has a good day,
bear2

 

[TBear]

Nice Sentiments and prayer... thanks.

Strangely enough I've often used the term... "God, I coul use a beer right now" and have never received a KEG!... and I go to church every week!

Merlot is a good start Gisele, The LCBO has a pretty good selection of some really great reds from all over the world. Some at half decent prices!

Sahajmarg..., if you want to get a jump on the ALS meeting try reading some of the publications available from the ALS Society of Canada (at the top of this page)

I hope everybody is having a good day... its rather miserable up here in Muskoka today.

T.

 

[me]

T - that's too bad about your unaswered prayers! Just remember, it's all in his timing....so you never know!

Marianne - welcome. It's great to have a newcomer. You are welcome here.

Bear2 - excellent prayer. I will print that and keep it with me.

I am feeling a bit better just reading the posts. It's just good to not feel so alone. You see, since there is no diagnosis, and hubby doesn't like to talk about it, no one except one close friend and his mother, even know what's going on. I like to talk about my experiences and feelings. Some days I think I'm going to explode. Not that I want to talk about it all the time, but if I could talk some, then maybe I'd get it off my chest and be able to move on! Well, that's what this forum is for so I'm sorry if I seem obsessed. This is really the only place I can get my thoughts out, read how others are doing, and get some answers to my questions. Look, now I'm tearing up because you all are so great! 8) (that's me hiding behind the shades). -me-

 

[June]

Introductions

Hi everyone - My name is June is this is my first chat - I've been reading alot for months. My mother was diagnosed with ALS officially 3 weeks ago. She had been experiencing problems, foot drop, numbness in arm, dropping things, slurred speech, difficulty swallowing starting over 3 years ago but her doctor would ignore our pleas for extensive testing until earlier this year. We met with a neurologist here in Windsor in July and in August, my mother fell and broke her femur in 5 places and in half ! Talk about scary. The trauma from the fall amplified her symptoms where she was not even understanable and the drugs for pain made her very helpless. We had a few episodes where she almost choked because she wasn't propped up enough. Even without a clear diagnosis, we were educating the nursing staff.

After 7 weeks in the hospital and rehab and her overcoming a slight bout with depression, my mother determined to walk again, left the hospital due to the huge improvement with her physio. A week later, in October we had the privilege of meeting Dr. Strong in London who was so compassionate and caring. He brought her back to the hospital 2 weeks later and kept her there for 1 week for an MRI, Angiogram, CTs, bloodwork, etc. and finally came to the awful diagnosis of ALS. The only good thing is at least we know what she has now.

The 3 months of waiting were filled with anger, confusion, great sadness. I have a 5 year old that has had diabetes since he was 1 and it seemed like everything is an uphill battle - and now we have this to deal with.

She began her Rilutek meds today and was just sized for her power-tilt electric wheelchair today and there is so much we'll have to learn. She has good days and bad days. There are times when she is very strong and you can understand every word and other times when it's the complete opposite.

For her, we are trying not to let it get us down. I still have my private crying sessions when it gets to be too much. But the main thing now is to get everything she will need in the best way we can now. At first she didn't want to tell other family members but has since changed her mind. I think she felt like she did something wrong to cause this - her motto is "I'm not dead yet!" She wants as much laughter and happiness around as possible. I try to see her everyday with the kids.

I found it very therapeutic to write a long letter to her explaining my feelings for her and my father. How much I need them and how lucky I am to have wonderful parents like them and that it was my turn to give back a fraction of the support she gave me. I just didn't want her to go without knowing that - even though as a parent myself, we all know how much our children love us! I can also say that it has brought us all that much closer together.

Thanks for listening and thanks for all the great thoughts.

 

[Al]

Hey TBear. You mentioned the other day that you and I and fisher were for the most part the only guys around here. I have always wanted to be surrounded by beautiful women. I have one but more is better as I am sure you will agree. Guys being guys and not wanting to show our feelings (not that we have real ones) anyway I think we have to convince some of the guys to join us. There must be some out there. Come on guys. Help us out TBear and I can not handle all these women by ourselves LOL. We need more guys to get down here with us and talk. Don't be shy. I was shy for the first few months but look at me now. Mr. Social Butterfly and I don't want anyone to take that description the wrong way.! What I'm saying is we are getting a great group together and I notice a lot of guests reading. Don't just read. WRITE.

 

[me]

June - wow! I'd just like to know what is wrong the the doctors and the resistance to check something out. I guess that is how it has always been, we are the dumb lay people and they....they are the MASTERS! I'm glad to hear there is a good doctor there in London.

Al - You're right, where are the men? They don't have to share all their touchy feely feelings if they don't want. This board is starting to sounds like it needs the grounded men!

This group really is growing good. -me-

 

[Carol Deboer]

Hi guys and gals, Cannot show any favourtism here....

SO MANY WOMEN, SO LITTLE TIME...... quit your whining lol.... And yes, we are all beautiful, smart, talented and creative. How wonderful is that!

June, welcome to our home. I hope that you will find what you need here in terms of comfort, answers,(to the best of our ability) and friendship. It is hard to carry on a normal life after diagnosed with als, however, you will manage . You will find out. Prayers are with you and your family.


TBear, Al, Fisher, You better watch out, you have it all right now, better be good boys.! Love yas... Gotta go to work now. Have a good day all.

LOve, Carol

 

[DebbieD]

i just copied this from my original post. i wanted it be in this list too

i was posting last year before my mom passed away in january this year. she had als as well as her brother and her cousin.

i was diagnosed last month with very early onset of als. i had an mri test and i have no nerve damage. however my doctor at sunnybrook feels that i do have als and has prescribed me riluzole.

i started noticing slurring problems after i'd had a couple of alcohol drinks in the summer. then i noticed i was having trouble with speech even without a drink. i was lucky that i didn't have to go through months of testing and ruling things out. my mother's doctor saw me 4 days after i e-mailed him and set me up with the mri right away.


i'm going to be involved in a stemcell research program at sunnybrook. my doctor has got full funding and needs 5 volunteers and someone to head the study. i'm volunteer number 4. this is not embryonic stem cells. the stemcells come from our own bodies.

i'm a very "up" kind of person and i'm not at all depressed about this diagnosis. i have to keep reasuring my father and my family that i'm okay.

i'm 47 married for the second time to the most wonderful man, dave. we have 5 kids altogether all grown, but 2 still living at home. we also have 3 granddaughters a dog and his cat.

i've always thought that this site was wonderful and all the people who post too!

 

[Al]

Hi Debbie. Sounds like you may be in about the same boat as Elaine who posts on here as well. I met with Dr. Cashman myself about the stemcell project and am still interested but there a few things going on outside my ALS that we felt that I would not be able to give the time commitment required for the study. I'll be all set for the next round. Good luck and I hope this works for us all.

 

[TBear]

... Al, Me and now Mike (I think Fisher has all he can handle for now)... yes we are truly blessed Carol. We picked up Mike ... and June and Gisele, and Debbie... There's so much estrogen floating around here that I think I'm starting to get in touch with the right side of my brain!
T.

 

[Carol Deboer]

Hey Ted.

I am soooo glad that you agree with me and the women of this gang. I know that you are used to being around women after having 3 beautiful daughters, and a wonderful wife. However, it is us now. We own you now. I have a few jobs around the house that I need done. Should I send you my list? Henry says its okay! I live in a household full of testosterone soooo.... I always look before I sit to pee.lol Everyone has their problems. I am sure that you love us all and love kabitzing with all of us. I think you are great! love ya... Anyway, Deb, my heart bleeds for you. I wish I could take all your pain away. You know what to expect, and that must be scary for you and your family. My prayers are with you always. If you need to talk anytime, I am here. Please, keep yourself strong. We are "all" here for you at anytime. Anyway, gotta go. Hey Al, can I stow away in your suitcase? I need to get away so badly. The sun would be so nice, and margarita's mmmmmm I can daydream for now. Talk soon. Bless all.

Carol

 

[Theresa2004]

Must be my catch-up night. Now guys and dolls, Fisher is still in the honeymoon stage, so he may be otherwise occupied.
Carol, can I borrow Tbear when he is finished with your jobs? I have a list I am still waiting for "someone" to do and still hasn't made it over to help. Seems he has gone AWOL, underground, just can't figure out where the exact location is. I can't tell if he is home, or has taken off somewhere. Very very frustrating.
TBear, you can fly to Carol's, then whip across to Brampton, land at our local flying club, and visit with the Brampton forum. Al will pick you up at the airport, you woudn't mind would you Al? Just up the street.
Debbie I won't begin to understand to effects on you, but I will tell the entire group, if our church had more candles available, I would light one for each and every one of you.
Carol, you deserve a holiday and some warm sun. You have an incredible sense of humour, understanding and strength. I will say honestly, when I heard about my friends diagnosis, I was terrifed, and heart sunk as all of you were when you were told. Is this what my future may hold? Am I crazy if given the opportunity, which apparently may not be in the cards ultimately for us due to timing for us, to take on this enormous situation? Do I voluntarily walk into it? Do I walk away as he has so many times pushed me away telling me to find someone I can spend my life with? It is a daily struggle, and when he shuts me out, it becomes even more enormous. Then I read the postings, I read how Fisher recently married, Linda?, his wife now, knowing what is before her. (Fisher, if you read this, I bet the group would love to hear from her). I read how the PALS have discussed their family and spouses support, and the CALS have jumped in, whether it be sister, brother, father, mother, or friend, look at Kim, Timshelper. These postings are what motivates me to go to some extreme measures to find out what is going on, but also to know on the days I want to throw in the towel, not to give up yet. I don't want to! I can't.
This question may sound totally off the wall in this forum, but I am trying to locate a member of his family whose phone number is unlisted, therefore the address is too. I know the city where he lives, the name is unique; there is only one person with that name in the region. It is his brother, who I have met, likes me, and if I every feel the need to reach him, I know he would be receptive. Private investigation costs a fortune, I can search land titles, but to do so, I have a bit of a drive to the registry offices of the region to do the search. Anyone have any suggestions? I would only contact him if I really needed to. I don't want to impose on anyone, and privacy issues are a huge deal now. But I am at wits end, and at least will locate an address to use if I really find myself with no other channels.
thanks.