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Beebe

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for gecc4

Hi there, My son-in-law was diagnosed on April 17th at Jefferson hospital n Philadelphia. That day is still a nightmare to us. We are working to fight this disease. Jack has a lot of support from family and friends. This is very important! My daughter started an organic food diet and mega vitamins for Jack. His metal levels were high and are just about normal now. He gained six pounds which he needed he is healthy if not for the ALS. Jack started with weakness in fingers and arms twitching in arms and legs. He is on rilutec and takes quinine. He has weakness in legs after walking a lot but pushes himself at times. At what point is your friend ? How old is he? Jack will be 42 on the 26th of June. Hang in there we are all in this together.. My Best, Beebe
 

TRACY22

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No im not PC

maybe i should stay away from this site but i will contib just a bit. Save your bucks on the vitamin stuff. a balaced diet of good fresh food we enjoy is better than the snake oil companies and ML sales push. there is no cure. we survive and make the most of each day or moan and blame others. our leg and arms are not going to get better! get the nice wheelchair and go for nice drives and get out. the more u exersize,yup, the faster ALS progresses...if u want a fight, fight 4 modifing your environment to meet your changes. fire the drs that dont prescib chairs,meds that allow u to eat, sleep, go to the bathroom....tired.. gonna watch nascar have a beer and take the chair outside later... luv ya but stop moaning....oh..have had it 2 1/2 yrs
 

Beebe

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To Tracy22

I was taken back by your response. I found it to be very cold. I understand you are angry no one wants this disease but we are here to encourage and support one another. What ever it be vitamins , organic foods etc if it helps or not we do not know. But hopefully one of the new drug studies will prove successful. We can HOPE! My Best to you, Beebe
 

ladave

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TRACY22 said:
maybe i should stay away from this site but i will contib just a bit. Save your bucks on the vitamin stuff. a balaced diet of good fresh food we enjoy is better than the snake oil companies and ML sales push. there is no cure. we survive and make the most of each day or moan and blame others. our leg and arms are not going to get better! get the nice wheelchair and go for nice drives and get out. the more u exersize,yup, the faster ALS progresses...if u want a fight, fight 4 modifing your environment to meet your changes. fire the drs that dont prescib chairs,meds that allow u to eat, sleep, go to the bathroom....tired.. gonna watch nascar have a beer and take the chair outside later... luv ya but stop moaning....oh..have had it 2 1/2 yrs

The question of exercise is not as clear-cut as you claim. The traditional belief was that PALS should "conserve" energy. However, more recent studies are to the contrary:

http://www.sciencedaily.com/releases/2005/11/051114110717.htm

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&dopt=Abstract&list_uids=11677004

A detailed clinical trial is currently underway to investigate the issue:

http://www.clinicaltrials.gov/ct/sh...onid=C6C35BE00C7AE99E07084ABBEB977742?order=6

My own neurologist and physical therapist are strong believers in regular exercise. I am on an exercise program and I definitely feel it is of benefit to me. In fact, of all the things I've tried so far (supplements, dietary changes, Rilutek) exercise and a positive attitude are the only things I truly believe have been of benefit.

Oh, and btw sharing information and supporting each other is not "moaning" or "blaming others".
 

Al

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A little brutal Tracy22. Each to their own opinion though. Isn't it nice we live in places where we can still be a little politically incorrect? I may have seen a bit of moaning here but we all deal with this in our own way but haven't seen any blame getting thrown around. You do offer some good advice albeit a bit harshly. Hope you have a better day tomorrow.
 

hope

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TRACY22,

A diagnosis of Als is very frightening. It is horrible, it is a nightmare, you want to wake up from this nightmare but it does not go away. It is absolutely devastating. We are all devastated, we are all trying desperately to cope the best way we can. I believe in any illness it is important to hold onto hope, hope that one day there will be a cure. Life is precious and when one is faced with something like this it is hard to know what way to truly feel. There is so much to cope with and yes there are days where I will moan and groan, I will cry like I have never cried before, I will feel angry, I will feel so sad that my heart feels like it is crushed but as long as there is a breath in me I will fight for my loved one who has this disease, I will put hope into his heart, I will hold him, love him, and take wonderful care of him. When he is scared I will do my best to help take away some of the fear. Life is about loving one another and holding on. Holding on to the beauty that there is in life. No there is nothing beautiful about ALS but there is beauty in the eyes of my love one. A human being who gave of himself all his life. Always helping others, always holding me up when I feel like I just cannot get up. I know you are hurting tracy and my heart goes out to you, my husband and I know that this illness can make you feel angry but is important to know that all of the wonderful caring people here are fighting for their lives and reaching for the stars in hope that the cure is close. You mention moaning, I believe anyone living this nightmare has every right to moan and understand that you are angry at the disease, you are not angry at us here, you are also trying to cope in your own way and that is okay. Sometimes just saying how one feels helps, it helps others understand how you are feeling today. We are a great group of people here who truly care about each other and are fighting the fight to live. Join us in the this battle, like yourself we are all scared but we are all trying our best to fight the fight.

Sandy.
 

TRACY22

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No not angry..really

I see on a recent count 450 views to this conversation but what i dont hear is the good times we are actually enjoying right now.(are u posting or just viewing?) I have a share the care group that helps around the house, went to a great ballgame the other week, take on assignment for our board, love speed....some good things........i'd like to talk to other ALS persons, but not always about the downers..... if this is not the site..point me in the direction...........yea im not good with words and many of my als freinds are gone now. yea i'm better off then many people(military disabled vets, alzheimer, ms,etc)..MY HEROS....CAREGIVERS.....angry no...understand where i stand,yup....talk to God every day, my comfort.......

if i upset you its not intended..heck come on over and sit on my porch and play with my dogs and we'll pretend we're at the lake
 

hope

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Tracy you are not upsetting me. We all deal with things differently. We all know that this illness is horrible and even though it is horrible my husband and I continue to live the best way we know how. We laugh just as hard as we cry. We are both singers and love to sing and play the music. We enjoy being in our garden, we have animals that we love dearly. We enjoy life every day even though we are in this. We smile, we laugh, we cry, we feel every emotion that a human being feels. I am happy you are not angry. Whatever helps you in what you are in that is okay. We all find our comfort zone. It is so nice to be able to express one's feelings and share with others, yes we may not all cope the same way or feel the same way but that is what makes us all unique. Take care.

Sandy.
 

Barbie4

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know what I am thinking

Hi Sandy:

Great post. Boy, you have all the right words. I have been known to moan and groan a bit myself. I feel I am justified, on some days, to feel that way. Today was one of those days. yesterday, had a great day. So Tracy 22, Good for you for enjoying yourself too. Everyone should have the right to come here and vent or cry if they need to or talk about good days too. I have needed to and the support here helps me. I also believe like Beebe, that we need to have some Hope that there are some things that help ALS and you never know when they might have a break through. We have to have some hope.

Thanks for your heartfelt post Sandy. It helps me sort out my own feelings a little better. I truly feel the way you do on many issues.

Barb :|
 

hope

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Barb,

Thank you for the kind words. It is okay to moan and groan, it really is. How can one not moan and groan in this. I have groaned lots and moaned lots, I have been down right snotty at times because to tell you the truth I just do not know what to feel sometimes. To those who do not understand I say to them just imagine what we live, just for one moment. I look into the eyes of my loved one and I feel helpless, I want a cure found yesterday. We all do, we are not robots or machines, we are human beings and we hurt, we laugh, we cry. The other day my husband needed me to help him take the lid of a carton of ice cream, I could see the pain in his eyes as I opened it for him. I gave him a big hug and said it is okay what you cannot do I will do, what I cannot do you will be able to help me. I needed his eyes to tell me is okay, we will be okay, and we hold onto that every moment of everyday. Feel what you feel it is okay.

Sandy.
 

Al

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Ok Tracy Where's the porch and can I bring our 2 Border Collies? We do get a lot of readers or lurkers as we call them. Shy? Maybe. Doesn't really matter. If they find something here that helps them through the day then we've made our day better and theirs. Most days you can't ask for more than that. Other than sunshine a good red wine and buckets of money. I was just reading about an Australia ,New Zealand ,Figi trip for 30 days only $12,000 each per person Canadian. Now that's something I could sink my teeth into.
 

Barbie4

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If I Win

Al:

That trips sounds very good. If I win that Hospital lottery ticket I have, I think we should go. Think of all of that Shiraz! We will stop the plane at Tracey's porch and have a few with her and maybe even catch some Nascar. ha ha.

I hope I win! :)

Barbie :)
 

davis06

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Gecc4

No how you feel . I was dig. with bulbar als in april 2006 also. I hadnt ever
heard of it. It is bad but we will have to carry on. I try to keep busy it seems to help.
I think I had it about ayear before I was dig. I have lost most of my speech but still have alittle. Have been told I need to get a peg for eating but am still eating fine right now. I have alot of cramps and am getting the twiges . I dont think I spelled
that right. Also on bipap. This support group is great I dont feel so alone reading
these posts everybody seems so kind .
Davis06
 

Al

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Welcome Davis . Where you from? There are lots of aids to speak for you if you can still use your hands and type. Hang around we'll get you up to speed soon.
 

TRACY22

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Hey Gecc

Good to see you can escape to the internet. The twitches you say, to me just bug me at times but not to big of a thing over all. Pain meds though, caused all of my stomach cramps. dont know if this is the cramps you mean. other cramps like legs, neck arms is caused by myself by not drinking enough or having help stretching..............in our support group many drop out because of bulbar......please dont! the different com devices out there are available and personally i like seeing and using tech stuff so having you come out and enjoy the day with us is cool..:?:
 
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