New and an ostrich

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So sorry you are now part of the formally diagnosed group. I can only share what I did: got a good psychologist, took a 10 day trip to France, updated my will, told my investment counselor to change my goals form growth to income, got a handicapped tag, got a formal DNR order, and started planning house renovations for a move to the first floor. that is not giving up (and neither are you), it is called planning. One day at a time. Find joy when you can, and try not to let the fear win.
 
Welcome to the forum, although none of us wish you had reason to be here. Like others have said, you really will find your 'new normal'. It may take a while. Just understand that any emotion you feel is okay. There are no rights or wrongs in learning to cope.

I hope your progression is slow, and you discover many blessings on your new journey.
 
Sorry you find yourself here, but here can be a great help. You are not giving up, being proactive and having things in place for when they are needed can give you a real piece of mind. It should also help ease your family's concerns about what lies ahead if they can see that you are prepared. It is a hard time for all but love, laugh and live all you can. Good luck!
 
Thanks to all for your help and obvious compassion. I know you have all been here but its still hard not to feel you are the only one. I took today as a pity party but will pick myself up and get in gear tomorrow and start planning the rest of my life.
How do you get a handicapped sticker, and a cheap will written and apply for disiability wow thats alot to figure out but tomorrows another day!
 
Im sorry you have boarded the bus...The blessing i found in this is the ability to plan. I have five y/o twins that I LOVE more than anything. I knew their memory of me would be vague, which is a hard pill to swallow. I wrote letters, cards, bought gifts, planned my funeral as I would want, and made sure I thanked everyone for keeping my memory alive for my children. Being prepared isnt giving up...Its smart.

I see the news of unexplained or tragic sudden death and wonder if they were prepared...Did they have things left unsaid? Did they have a funeral where the service didnt reflect who they really were? So this disease, as ugly as it is, does come with hidden blessings.

May God guide you with Love & Peace and camp his Angels around you.

Hugs,
Michelle
 
Im sorry you have boarded the bus...The blessing i found in this is the ability to plan. I have five y/o twins that I LOVE more than anything. I knew their memory of me would be vague, which is a hard pill to swallow. I wrote letters, cards, bought gifts, planned my funeral as I would want, and made sure I thanked everyone for keeping my memory alive for my children. Being prepared isnt giving up...Its smart.

I see the news of unexplained or tragic sudden death and wonder if they were prepared...Did they have things left unsaid? Did they have a funeral where the service didnt reflect who they really were? So this disease, as ugly as it is, does come with hidden blessings.

May God guide you with Love & Peace and camp his Angels around you.

Hugs,
Michelle
 
Having ALS isn't all bad.

If you got hit by a bus and died, would you have a chance to tell your loved ones how you feel?
No!

We don't know how long we will be here, or in what state.
Enjoy every little gift as if it were the best thing in the world, I know I do.

It just means we have to cram in all we thought we could do over the next 30, 50 or 80 years into less time.
Doesn't mean we fold up like a cheap tent, it means we live, and live life to the fullest. (whatever each and every one of our fullest is)

Hang in there.
I hate ALS, but it has taught me how to live.

Cheers,
Casey
 
Hi. I'm really sorry for your diagnosis. I was diagnosed in October 2010. I can no longer speak, bot I have an iPad that helps. I have trouble swallowing, luckily I listened to very good advice and got a peg tube placed right from the start. Now I can eat what I can and enjoy it, while supplementing nutrition and hydration through the peg. I just my first fall while walking. Now my husband joins me on my walks. We walk arm in arm, very romantic. I have a great support team and my doctors and nurses are wonderful. They have become part of the family. I guess I'm trying to say you don't have to plan on dying, that may not happen for many years. But definitely plan on how you will live by being proactive in your care and adapt to the changes in your life. It's not easy and sometimes I cry hard, but then I remember I need to plan my meals, do my exercises, take my romantic walk and live. You can live with ALS. It's just a bit more challenging. God bless you.
 
Thank you Lizzie for your practical advice laced with optimism, it really hit home. I also now walk hand in hand with my husband, I was always insuch a hurry before but now ALS has slowed me down and I need his hand for support. God works in mysterious ways it appears.
 
Cynthia,

They say the third time is a charm, so here goes..its so nice to meet you just wishkd it wasnk here. Everyone has givern you great advice and I wont repaeayt anything.

The one question you asked was about handicapped parking. Each state has their own rules,sokyou will hace to check CA's. First stop, a visit or call to DMV (you may be able to dwnload application). Take to dr, have him fikll it out and return it to DMV. In SC we may have two kpermanent tagks and two permitsk. With the tags, we do not pay takxes on those two vehicles. With either we dont feed meters.

You may also qualify for reduced pkroperty taxes on your home. Good kluck, I just love visiting DMV.

Kimberlky
 
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I am sorry for your diagnosis. I know it is not easy and honestly there is no right or wrong way to deal with a diagnosis. You have to deal with the emotions in a way that helps you cope. The key though is to realize that there is life after diagnosis. I am sure by now you have realized that the sun still rises and life goes on. You must adjust to new "normals" but you now have the opportunity to ensure you are living your life the way you want to. I wish ALS upon nobody and hope and pray for a cure for everyone, but most people never get to come to grips with their own mortality and if they did perhaps they would make some different decisions in life. Now you have that opportunity. Would you rather not have ALS, of course, we all would that goes without saying but I can also say it has made me a better Husband, Father, friend and person.

If you go to to the section called People with ALS "PALS" - look for a thread titled ""Newsletter" I wrote an article titled "Diagnosed, Now What" it may interest you.

Welcome to the "Forum Family"

Stay strong and keep the faith!
 
Cynthia~ I am so sorry for your diagnosis >>>>HUGS<<<<

Def making plans now is a SMART thing to do. As you can see by all the wonderful responses for this super awesome forum family there are many here that have your back!

I pray that your progression is a slow one!

Cry when you need to & yell and scream but most of all don't forget to live your life, don't let ALS consume who you are.

Stay strong! <3
 
Thanks to all for your help and obvious compassion. I know you have all been here but its still hard not to feel you are the only one. I took today as a pity party but will pick myself up and get in gear tomorrow and start planning the rest of my life.
How do you get a handicapped sticker, and a cheap will written and apply for disiability wow thats alot to figure out but tomorrows another day!

Those things sound daunting, but ban be done.

Handicapped placard. Download the form from the DMV site for your state. Your doctor, even your GP, can fill it out.

A will can be inexpensive, especially if not complicated. Call a local attorney.

Disability/Ssdi will be approved. With als it's automatic. You get benefits when you have been off work due to your condition got 5 months. There is no two year wait for Medicare with als.

The others here have wonderful advice. Plan for tomorrow but live for today. I'm sorry for your diagnosis.

If you have good insurance now, you should see about perhaps getting a brace for your drop foot. Try to avoid those dreadful falls if you can.
 
Here in Colorado my husband did a search for Disability Placcards and got a form for me to fill out. Then I took it, filled out by me and signed by my Primary Care Physician to the DMV. I had no problem getting the placcards and they last 3 years before you need to renew them.

Also, some great advice and direction came from our ALS Support Group here in Colorado. They recommended building a good team of doctors in a Primary Care Physician, a Neurologist that knows about ALS and a Pulmonologist that knows about ALS. It's important that you feel confident that these doctors have your best interest in mind. They will recommend other specialists like Physical Therapists, Occupational Therapists and the like. Build your ALS team and you can get through this without feeling alone.

Are you able to collect Social Security Disability? If so, if you are done working for income call them and explain that you have ALS. You should be able to start receiving benifits in about 6 months after the last day of your job with a diagnosis of ALS. They will also make up the pay for the 6 months you have waited for the benefits to begin from what I understand. Please someone correct me if I'm making any misstatements here as I've only begun this process last month.
 
I did want to add that sometimes your own private insurance is a better choice if you have it. When you apply for SSDI don't use an attorney, you don't need one and there is no reason to give them any of your benefits.

If you don't need or want to work, apply now. I can't remember if I was paid for the first five months, but I was paid for the year it took me to be approved. (I was not approved for ALS, you won't have this battle).

Take care of you! Get and learn to use any assistive tech before you need it if you can, would be my suggestion. With drop foot, you need a brace and maybe a walker to prevent falls. Also, if you're not with an ALS clinic, find one. Also, the ALS association will have a lot of helpful info for you.

Most recommend getting a second opinion from a specialist.
 
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