New to the group

[Jeanau]

I'm a happily retired educator who was sadly diagnosed with ALS last month.

The time it took to arrive at my diagnosis was short. I started looking into my leg weakness in September, was tentatively diagnosed on December 4th, and officially dignosed by the ALS specialist at Pitt (David Lacomis) on New Year's Eve.

My husband and I are still in a state of shock.

I have lower limb onset and my legs seem a little weaker every day. I get around with a cane and have begun to use my rollater. We had stair lifts installed last week, and I pick up my AFOs tomorrow. My hands are becoming weaker, and it saddens me to think about giving up sewing. My voice is weaker and I have a dry cough...as of now I'm able to eat and drink without difficulty. My lung function is strong.

My faith is very strong and I'm not afraid to die...but, I'm anxious about the process of dying from ALS. I appreciate all that you share on this site. I believe that knowledge is power and support is a blessin

 

[azgirl]

Welcome Jean and sorry you had to join us.

Im a happily retired educator who was sadly diagnosed with ALS last year. The first months are really tough, a real roller coaster. Give yourself some time to adjust and then figure out how to make the most of your moments.

The great people here have answers to all your questions. We understand.

 

[Nuts]

So sorry to have to welcome you here. There are many wonderful people here who will support you and answer questions--please ask away or just vent--we're good for both. It WILL help to chat with people who understand what you are going through.

 

[Vincent]

Sorry to meet you here. You are among friends.
Vincent

 

[MaxEidswick]

Hi, Jean (?) - My name is Max. I can't type so well but keep a file of text and I will post some below.

>as of now I'm able to eat and drink without difficulty. My lung function is strong.

Enjoy! and may it stay that way for years! you never know


>I'm anxious about the process of dying from ALS.

Well, IIWII ("It Is What It Is!") ..., no hurries, don't dwell on it (easier said than done!) ...

------

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
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If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect

fear, anger, bitterness, and a new awareness of life. I have found that being active here on

these forums has helped me in way I cannot explain, but you will see.

Kind regards

Max & Sandy



Max - Thursday, January 22, 2015 8:43:27 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[affected]

I so hate welcoming new members

But if that's the case then be assured you are welcomed heartily to the family here where you will be understood and supported and you will be surprised at how much support you will give back.

This early time after diagnosis is just horrible and so hard, it will get a little easier in some ways and the amazing PALS here will show you how much there is still to enjoy after diagnosis. I was just watching video of our Max with 2 grandkids and a dog on his lap, 2 dogs on a lead, driving his pwc up and down the road. Ok not a pontiac, but I both laughed myself silly and cried.

Take each hour at a time and lean on us.

 

[cheerleader]

Jeanau, I'm a retired teacher, too. My advice to you is to include this objective in your "daily lesson plans":
Have fun, laugh, love and remember you still have lots of living to do and time to do it!" Good objectives
For all of us.
I am sorry you have to be here- but we all understand the ups and downs of your journey, and will surround you with caring and information. This forum got me through many difficult days, and you will find the courage, spirit, humor and caring shown here will brighten your days. Welcome. Donna

 

[Gembead]

Welcome Jeanau, you will meet many wonderful and caring people here.
Love Gem

 

[djbailey]

Welcome to the forum. there are good people here that help each other all the time.

 

[andycap]

Welcome,you will find many kind people here with tons of useful information.

Andrea

 

[Janie H]

Welcome, this a good place to vent or ask questions.

Janie

 

[anderkling]

I know what you are going through. I was officially diagnosed just last week, but the symptoms started in my left leg in November. I am a teacher, not yet retired, but on permanent medical leave. Facing this disease is harder than anyone can ever imagine. It is terrifying and overwhelming. Your strong faith will help you, as it helps me hour by hour, day by day. My husband keeps telling me to not think about the progression of the disease and what's going to happen in the future. He's right. I also find it helps to try to live one day at a time and appreciate the blessings that come my way in the moment. I too was getting worse by the day, but now that I'm on riluzole/rilutek, I think I'm doing a bit better. It's the only drug for ALS, and it's worth a try. You are not alone . . . we are all here walking this journey together. I'm so sorry, but thank you for joining the forum.

 

[gooseberry]

Welcome to our family. We support each other, offer insights, rant, rave....we do it all , even laugh. We are here to help you. Ask any questions you have-none are too personal or out of line. Someone has probably experienced the same problem and can offer advice. Glad you found us. Steph

 

[Jeanau]

Thank you very much for your kind messages of empathy and support.

I went to pick up my AFOs yesterday, but they were different than the ones I had tried on the week before. They did not fit against my leg as well. I knew that if I took them home, I would regret not speaking up. So, I gathered my nerve and said that these were not the same type that I had tried on the week before and I could I see that sample pair again. The technician couldn't have been kinder. He went and got the samples and saw the differences I was concerned about. He said that he would reorder and I could come back next week and pick them up. I am glad that I was my own advocate and spoke up when I did.

I have tried Riluzole two different times and it makes me extrememly sick. The doctor and I agree that it is senseless to ruin the quality of my time to gain a somewhat short quantity of time. I am glad that so many of you can take it without any issues!

I'm going to a 15th birthday party for my granddaughter today. I admit that last night I cried thinking about all of birthday parties I will miss in my future. But, I gathered myself together and realized that I CAN go the party today...and that's what matters for now.

Thank you again for your caring support...like it or not, we're in this battle together!

 

[affected]

That's the spirit, you are already moving in the right direction Jeanau!

Standing up for yourself, not by getting in a huff and going off at someone, but by stating your case and requesting help. To me the technician should have known the difference, but hey now that you have advocated for yourself that technician may become more aware and check further orders more closely, so there are two wins here!

Yes, you can go to this party, and you can enjoy it and contribute to a wonderful celebration!

Keep posting here, it's very helpful in working through the myriad of things that you are trying to make sense of early after a diagnosis. Helps every one of us too when we watch a new PALS get through this time.