just needed to talk to those who understand

[daigs]

Hi everyone! I had a man by the name Ron Hoffman come out to my home and help me plan for my future. He is a wonderful man who helps those of us with ALS make safer homes and get free equipment. I live at my parent's house, an in-law apt that is over the garage. Well, we have a lot of work to. My parents say there is no way that they will put me in a home. They said that they will send my grandmother who lives with them in the house out and I will go into the main house...lol. Well we have to put in an electronic lift, 2 large ramps, 2 new doors, and nock down a wall and move it 4 feet. My dad just said no problem, whatever my baby needs. I am not in a wheelchair yet but my dad said he wants everything done now so when I do or if I have a bad day it is there. He always asks me how I am feeling and doing and so does Mom. They both keep asking why. They don't know who I can stay so possitive when this is going on. My brother is in total denial, to the point he said not everyone dies. I just let him think what he wants and slowly fill him in on the truth. My boyfriend and family don't get a lot of the tirednesss. My boyfriend says push yourself through the weekness. It is so hard to say that the weekness is not due to being tired but because the muscles are not working. How do you explain it?
My family and friends are hosting a fundraiser/raffle to help raise money for the house changes. I am actaully doing a lot for it because it is keeping me busy and my mind going in better places. I am scared of the future, but I can't say it to anyone here because they are as well but for different reasons. The winter and the weather does not help with the mood...lol. Not a lot of people know I have ALS. I feel imbarressed or assamed even though I know I shouldn't. Has anyone else felt like that? Like you did something wrong but know you did not do this to yourself. My 20yr class reunion is this year and I have so many emotions about it because of this. I KNOW there is NOTHING to be assamed about. Everyone is going to find out anyway because of the fundraiser so I better get over it and get over it fast. Hope everyone is doing well and thanks for listening.

 

[momap53]

Sorry, Cheryl.

Kudos to your parents for getting everything in place now. Don't feel bad. It will make their life easier too.

We all have our bad moments (or days or weeks or months) sometimes as soon as we've come to terms with one loss
another one is upon us.

Fatigue is a fact of life with ALS. Some do have success with meds like Mestinon non or provigil.
You can't push through it or you might find yourself completely debilitated for a day or several afterwards.

Lots,of folks just don't get it and are unwilling to do the research to learn more.

Ask your brother to watch 3 videos.......the ABCs of ALS.

Hang in there!

 

[vickim]

Cheryl

You hav a great attitude. You are right there is nothing to be ashamed about. There is nothing to be embarrassed about either. Everyone comes to grips with their diag nosis in their own way. I did not tell anyone about my illness until it finally drove me to the doctor. Everyone was upset with me but like you I was embarrassed. I did not want to tell anybody but sooner or later they would notice my walking funny and ask. There are still people I used to work with that I have seen since I started using a cane and when they ask I just tell them I am getting old. I still feel rather personal about it all.

You will suprised how supportive people can be and if they aren't then you don't need them anyway. In time your boyfriend will learn the difference between tired and weak. It is all a learning process and he may just be scared.

Yes I am ready for spring, we are getting snow right now. I won't go out in it because I am afraid of falling. The dreary clouds don't help with the mood. Everything you are feeling right now is totally normal, so don't beat yourself up over it. I wish you peace. Hugs :smile:

 

[cervus]

Cheryl - you sound like such an amazing young lady. Your thoughts and feelings and emotions are so natural. I feel the more people that know you have ALS, the more support and help you will have. Some of your friends/family will get it and help and some won't. Rely on the ones that do. They will truly be there for you.
I am very sorry for your diagnosis. It's a relentless illness. It's great that you have such supportive parents who are there for you. You seem to have "educated" yourself on ALS and so have your parents. Staying two or more steps ahead of progression is so important. Take care. Yasmin.

 

[daigs]

Thank you all so much. Thank you for assuring me I'm not alone in my thoughts and it's normal. I am so happy I found this forum. I do have a wonderful family and friends. I have a close friend who is no longer around but that's ok, they just don't get it. Thank you guys/gals again.

 

[momap53]

I think that many of us have had friends that just couldn't handle it

 

[mbmurray]

I was just diagnosed a month ago, but the people I have told, family, my close friends and work have been very supportive.

In some cases, I think I have been stronger that they have been. I think having an attitude like yours is the best way to attack this disease, I plan on being around a long time fighting this thing!

 

[pearshoot]

there is no shame in being diagnosed with als. don't be afraid of going out in public, and if someone questions tell them the truth. on my walker is a sign that says walk to defeat als fighting lou gehrig's disease every day want to help or want more information please ask questions
you will soon learn so little of the public knows anything about als please join with me to start educating as many as possible. our goal will be to inform everyone so they know as much about the word als as they do the word cancer. there are many more suggestions that i am willing to share with you , please just ask

 

[SMP51]

even a loving and supportive family does not "get" everything you are having to deal with. I did not understand the "to tired to do anything" in the beginning of all this that my husband goes through. He was starting to have difficulty walking and our active life was coming to a fast end. I wanted to grab everything we could while we still could. He would tell me he didn't feel bad but he just couldn't go places or do things. I didn't understand, just because you cant do a lot of walking why cant we go some place to sit around, visit, watch something, or whatever? I didn't get it that he was just exhausted all the time. and he didn't know how to explain it to me. maybe this will help your boyfriend.... you have only so many units of energy aloted to you a day, say 10 units. once you use them up your done. so you must spend those units wisely, if you use them up pushing yourself to do something you really don't need to be doing they are wasted and gone and the thing you needed to do later in day does not get done at all. ten units of energy a day and when they are gone they are gone.
Figuring out how to live with this ALS monster takes a little time for everyone it affects in your life.
Your Dad sounds like a practical guy and deals with things like I do, get r done, be ready. this is going to make things so much easier for you, you wont waste your energy struggling up steps when you should be using it to doing something you need to do or want to do.
And if your Dad is going to be ahead of the game taking care of future worries and needs then you can cope with today. That is how my husband deals with, wakes up every morning and faces today.
Friends have been an interesting turn of events. Some of the least likely have been the ones to pop in regularly and break up his day or do un asked for help. a few very good friends we have heard very little from, I don't fault them as I know we are loved, everyone has what they can and can not handle.....but I am sad for them as I think one day they will wish they had time lost.
We found the hardest part of letting folks know the diagnosis of ALS was the heart break of telling it, most just don't know what to say if they know what ALS is or once you explain it. The best response my husband got was from a customer who innocently asked him about his limp, the guy looked him square in the eye and said "oh my God, that sucks!" ..... it was the most straight forward honest response ever, and appreciatively received.
the blessing this horrid disease has given us is it has made us realize the things that are truly important in life, and the only thing any of us truly have is this moment right now, so how I am treating the person next to me at this moment.

I am glad you found this forum, I am not here very much but the people in this community are the best

 

[Annie's Phil]

Cheryl, I admire your positive attitude - it will serve you well in coping with this disease. I'm dreadfully sorry that you have been afflicted with ALS, but very glad that you found this forum - welcome.

You obviously have a very loving and wise father. I heartily agree with him that it's best to go ahead and make whatever house changes can be done before the need arises. You didn't mention it, but I presume that Ron addressed accommodation for bathing and toileting. These become two of the major activities of daily living that often require house modifications and equipment acquisition.

Grace & peace to you, Cheryl.

 

[momap53]

SMP51, very well stated!

 

[pearshoot]

daigs do i understand you live in the apartment above the garage. if installing a lift it may be a short time for someone to be there to help make the two transfers. for your information i am a crusty 77 year old retired army paratrooper (retired may 73) industrial education instructer willing to provide recommendations on non medical problems

 

[Uptown]

Cheryl (and those that have replied),

I stopped going out to eat because of the choking and then having to spit out thick secretions from the lungs almost continuously and feeling so bad for those having to sit at the table and endure all the snide remarks and horrible stares. I do go to places I frequent often that friends own because they have traveled this journey with me and get it. Family yells at me because they think I have given up and all of them chastise each other for not visiting and even when they say they are coming they don't show up. Likewise with friends. All I read in this thread reminds me the importance of enjoying the moment. I have outlived all expectations of the medical community from much of the information gained from all the heroes I have met here. Be well but be diligent!

 

[notme]

Hey Cheryl

Welcome to the forum. As for the question about explaining the weakness to your boyfriend, say this: "I can't work though the weakness, dear, as my muscles no longer work due to the nerves now being dead. It's not muscle fatigue--it's muscle death. There is a big difference."

Then, send him here to read a little bit.

Please don't feel ashamed. You certainly didn't give yourself ALS. Not one of the PALS did. It's indiscriminate. It strikes when and where it pleases with no warning.

Let your brother remain positive! And you can as well. There are new things coming all the time. The pacer for breathing seems to be helping those with it.

While the doctors paint a grim picture for PALS--it doesn't have to be a death sentence. Some progression is very slow. Some PALS fight for years and years.

It will take your body--don't let it take your soul. IF its too painful for your family to be able to listen when you need to talk--please find the ALS society chapter for your state and area and talk to one of their counselors.

There are also support groups--for you AND for your family--and as always--you can ALWAYS and FOREVER ask any question, post any rant you have or get support from every member of this site. It's a great group that goes above and beyond to help other PALS and CALS.

I'm very happy your parents are there for you. It's hard for them to see their baby not well. Their feelings are perfectly understandable. It's not supposed to happen like this--parents are the ones that get taken care of...not kids. THey've been raised to believe it in that way. We all have.

As for the reunion--GO and have FUN! If you want to, that is. You don't owe those people a thing that aren't considerate and understanding. And those that are--well, they can only help you.

Hugs hon-- keep on keeping on

 

[daigs]

Thank you!