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Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
Hello Everyone,
I read where Caroline was concerned about everyone and just checking to make sure everyone was okay, Caroline you are such a sweetheart, thank you for your concern. We are still hanging in here. We have been trying some new things at our house ( as everyone knows the doctors have no answers) so I am reading, researching and changing the ways we are doing things (food, cooking, detoxing, prayer, meditation, holistic medicine, ect.) l will update you all on everything as soon as I see any results at all, sometimes you have to go outside the box and I wouldn't want too give anyone false hope. I am desperate and I don't plan on loosing this battle or my husband without a fight. So as you all can see I have been busy. Take care my friends! Gracie
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
gracie,i wish you and your husband all the best with any changes you are trying to make things better.
its good to know you and your husband have still got the fighting spirit.
take good care of yourselves and hope to hear updates soon.
godbless.
caroline:)
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
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Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
I think everyone has to go through this process... and I pray to God that it works for them.

With my mom, just before and after diagnosis it was a mad rush to see if alternative medicine would work. She saw naturopaths, homeopaths (several), changed diets, experimented with supplements etc. And each time she got more and more depressed when she witnessed that nothing worked. However, if we did not go through this process, we never would have had peace in that everything was tried. Apparently, for some people alternative medicine works.

Good Luck Gracie to you and your husband!
 

Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
sral you are so right on. My husband and I have never felt so totally (on a raft set a drift out to sea) as we do with the medical profession. How can a group of medical practioners act so stupid and make you feel so on your own with ALS/PLS. We have never been quiters and once all your test come back okay and you are still having the problems they just throw their hands up in the air and say wait and see (not exceptable). Just how helpless does that make you feel? I told my husband..... we can't go wrong with anything we do because the doctors are doing NOTHING! I could just pinch the doctors heads off for being so inefficient. Believe me we have gone to many doctors and they all give you that stupid look. Sorry for this terrible attitude but I am just very angry. Thanks for listening (physicians don't even do that very well). Gracie
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Gracie. We listen here. Feel free to let go when you need to.

AL.
 

Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
Thanks Al,
Have you given up? I know you have been dealing with this horrible illness for sometime now. Did you also try everything you could think of before you just decided to live everyday too the best of your ability? I am too afraid to not keep trying, I am scared to death to give up, if I give up I will lose one of the most important thing in my life (my other half), how can this happen? We can send a man to the moon but we can't cure this dreaded disease. There has to be an answer.....what is it.....where is it.....why is it...who has the answer? Nobody understands the despair, sadness and grief one feels unless you have this horrible disease or you are a loving caregiver. God help us because no one else can. Maybe thats the answer. Take care my friends, from the sounds of it I guess I am not doing as well as I thought I was. I am very guarded with whom I discuss this with because it really depresses my husband and he needs to be positive. Wallowing in self pity today. Gracie
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Gracie,

I can honestly say I have been there. I too thought I was okay, but the reality is that I truly did not accept this until just recently - 1 year after diagnosis and numerous alternative medicine failed attempts. My mom on the other hand, after all this time, still has not accepted it. She has not accepted things for what they are and try to work with it and move on. She rarely goes out and when she does if she encounters someone who has not seen her since her ailment, she gets all anxious and blocked up stiff. I told her that she had nothing to be embarrassed of and that she needed to accept what she had and to face people with it. I felt really bad afterwards because I felt I was too hard on her. I was just trying to build her up and give her that 'umph' to go on. She replied that I don't understand and the truth of the matter is that although I may think I do - I really do not. I'm not carrying this - she is. This is so truly difficult and so I totally understand your anger.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Gracie,
Yes, it is easy to fall in to self pity with this disease. I think it lasted for me for about 2 weeks!
Then I realized God had given me this disease FOR A REASON. I don't know the exact reason, but I think it is for me to educate as many people as I can about this disease. I can't tell you how many people I have educated over the last 7 weeks.
Yes, it is scary, horrible, devastating...but all of that aside, I had to come to the reality that ALS is what I have, and I will live every day like my last.
I have found that I am not so much OCD as before, I can let the house stay dusty, I can even leave dishes in the sink when I'm too tired! But the best thing I've found is the interaction with my 3 sons and my hubby. We do more things together, and we actually thrive on sitting at the hot baseball field when the heat index is 114!

I don't mean to ramble on, I just hope to help you feel better in some way. If you aren't taking an antidepressant, maybe you should talk to your pcp? I don't know, sometimes people say that can help a lot. You need to keep your strength up for your other half, so don't knock yourself out over all of this! Come here to talk to us, you will find a TON of support here.
Take good care of yourself,
Keep the faith,
brenda
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Gracie. I hope you are feeling a little stronger today. Everybody gets down from time to time. THis is the best place to come when you need support. :-D
 

mactravel

New member
Joined
Jul 22, 2008
Messages
3
Reason
Loved one DX
Diagnosis
11/2007
Country
UK
State
Cleveland
City
Middlesbrough
my Mam has MND

Gracie, good luck in your fight. I feel lucky to have the support I have. When my Mam was first diagnosed I was already aware what MND was. A football hero from my childhood days died of the disease about 5 years ago and had written a book about his life leading up to diagnosis. Because of his high profile in the area there was lots of coverage and work done in dealing with MND. We were told about the variants of MND and which one Mam had. We were introduced to an MND team located at the local hospital. They pointed out the reasearch that is going on and they have helped tremendously in gettting required aids and instruments. Although the wheels don't always turn smoothly, the effort and communication eases our path.

However, the greatest strength I get is from Mam herself. She has accepted that it is a matter of time and looks forward to God. I am not practising myself but I can understand that her belief has given her something to look forward too. so my time is spent finishing off the jobs she can no longer do herself: mainly her garden (and I hate gardening). Although she can't talk now I have learnt more about her youth and parents (both died before I was born) and grandparents than I have over 40 years.

Ramble ramble... I guess what I am trying to say is don't get too wrapped up in the fight at the expense of making more lasting memories...

Love from all in Boro
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Gracie. Sorry it took a while to get back to you. My internet has been falling apart for the last few days. Slower than dial up if it even works. In answer to your question, no I haven't given up. I guess you could describe me as a lapsed Catholic so I am not sure if I have faith. That may be not entirely true because I have faith in the fact that there is nothing presently available that will help me deal with this disease except my belief that I had better live each day to the fullest because I don't know what tomorrow will bring. I do have days that even after 4 years bring me down in the dumps and I just want to scream. I don't think you ever really get over that feeling. If it doesn't happen too often you're doing OK. If it doesn't go away then it's probably a good idea to find someone to talk to or get some meds. No shame in either. After all we are talking about our life and death here. It's not easy and I wish I had all the answers to help everyone here. What works for me is looking for something positive to happen every day. We live with our daughter and son in law and their 19 month old daughter. She makes me smile just seeing her. No matter how miserable I might feel she brightens my day. you just have to find something to look forward too. Not sure if I've even answered your question satisfactorily but that's my stuff for today. Take care.
AL.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Al,

You're very lucky to have your granddaughter with you every day. Kids are wonderful distractions. Although I do not live with my mom, she sees my kids almost daily and it's only when the kids are around that you really see her laugh and smile. It's GREAT!
 
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