Royal Caribbean Cruisers -- How Are Things Where You Are? (was "Routine" ​ 😁 ​day in lockdown... how was yours?)

[h20skibum]

5 minutes ago, molly361 said:

So sorry to hear that John.  Sending you hugs and prayers

+1 @Ozark_Kid John.  Prayers from us too.  You do have a loving supporting family, and an extended one here. 

[Keksie]

12 minutes ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

I am so sorry that is the diagnosis.  I am glad that right now things are good.  You will be in my thoughts and prayers that things stay good for as long as possible.

[helen haywood]

17 minutes ago, BonTexasNY said:

Caring and sharing bad news as well as good news in here is what we're all about.  

That absolutely sums up Dani’s entire thread!

[Ocean Boy]

36 minutes ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

Another post that I would have missed if not for someone else's quote.

 

Sorry to hear of the diagnosis. Keep in mind that ALS can progress very differently in different people. My point being that you should not read other people's stories and extrapolate them to being your story. Keeping a positive mental focus is one of the best things you can do to keep this at bay. That part is your job. Your doctors will help you with all the rest.

 

I am glad that you shared your news. This thread is not all about happy smiley stuff. Now we can all help you stay positive when you might be feeling a bit down.

[CrzLvr2]

1 hour ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

 

While that is not the news that we have been hoping and praying for, John, thank you for sharing it with us. I think you must know that all of your “Dani friends” will continue to keep you in our thoughts and/or prayers. Please don’t worry about having to give us bad news. We’re your online family and that’s what we are here for - to celebrate with each other when there is good news and to give comfort when there is bad news.

 

Take care,

Sue             

❤️{{{hugs}}} 

[Sea Dog]

1 hour ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

 

John know that myself and the others are here for you. You will not be alone in this. We will be together for you to lean on us and we will be positive and help you any way we can. We love and care for you.

[#55worktoplay]

@Ozark_Kid I’m very sorry to hear the news.
Continued prayers for you and your family being sent.  One day at a time, your positive upbeat nature will get you through tough times. 

[lenquixote66]

17 hours ago, Sunshine3601 said:

+1.  Best wishes for your appt. Tomorrow 🥰

Thanks,Debbie but it did not go well.The Neurologist now believes that my inability to walk is not due to the Parkinsons but to the Spinal Stenosis.I have had 3 surgeries,8 epidurals,9 acupuncture treatments and have been to 10 physical therapists for spinal stenosis.He said unfortunately there is nothing more that can be done.

My condo complex has a Health Club on the premises.I have not been there in 4 years.I am going to try that again .

[bobmacliberty]

2 hours ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

 

John - I'm sorry that you didn't receive better news. Add me to the long list of people here willing to support you however we can.  I was reading recently about the huge increase in ALS research funding as a result of the ice bucket challenge from a few years ago.  It sounds like there has been a lot of progress, including a new treatment that was approved last fall.  

[lenquixote66]

My daughter who lives near me and her family are leaving tomorrow for a 5 day vacation.Their dog Beuk will be living in my house .I am going to find out if he likes to listen to Classic Rock music.

[Arzeena]

2 hours ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

Sending you hugs and prayers John.

[akcruz]

2 hours ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

 

Many have already said it much better than I could.  Sometimes just having a diagnosis can be a good thing, at least you kn9w what you are dealing with.  Thinking and prayers for you and the family.

[Ozark_Kid]

2 hours ago, Ocean Boy said:

My point being that you should not read other people's stories and extrapolate them to being your story. Keeping a positive mental focus is one of the best things you can do to keep this at bay. That part is your job. Your doctors will help you with all the rest.

Thanks for the advice.   I have been for the most part staying away from Google on this ride.  I read bits and pieces when I didn't know terms like motor neuron, etc but quickly end the reading.  It has been harder for my youngest DD because she is an OT at a local nursing home.  My oldest DD is also an OT and has been aggressive in researching and helping out.  She has joined us in our Neurologist visits and takes pages off notes.  Something funny yesterday.   After our appointment we went to our grandson’s soccer game.  As we were leaving my SIL carried our chairs to the car.  He said to Sharon after I got in the car,  I told Sarah not to cry...... then he started crying 😢.   So much for holding back.  Sharon told him it's OK so don't tell Sarah she can't cry.

If Jesus didn't hold back when he wept, who are we to ask someone to hold back.  I understand where my SIL was coming from.   My SIL is special. 

 

[NHProud]

@Ozark_KidSending prayers your way.   Keep a positive mindset .  We are your sounding board , here. 
 

I’m in the hospital waiting room and will be joining my husband in the recovery room after his knee replacement surgery .  Everything went well ! Thank you for your kind words. 

[Ozark_Kid]

55 minutes ago, bobmacliberty said:

 

John - I'm sorry that you didn't receive better news. Add me to the long list of people here willing to support you however we can.  I was reading recently about the huge increase in ALS research funding as a result of the ice bucket challenge from a few years ago.  It sounds like there has been a lot of progress, including a new treatment that was approved last fall.  

I had heard of the ice bucket challenge but at the time didn't understand what it was about.

The Neurologist mentioned 3 different treatments of which one is the newest one you mentioned.   I am going to start one of the treatments this week.   I will do it for two weeks then add the one you mentioned.   We are doing that way for two reasons.  With the possibility of side effects she wanted me to take one for two weeks then start the other.  Second,  the one you mentioned is a challenge to get insurance approval.   Should work out.

[3 Kitty Mommy]

3 hours ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

 

Thinking of you and will keep you and your loved ones in my prayers.

[bobmacliberty]

22 minutes ago, Ozark_Kid said:

Second,  the one you mentioned is a challenge to get insurance approval.   Should work out.

 

I'm sure OB will agree with me...Doctors should be in charge of medical treatment, not insurance companies. 😠 I hope everything works out for you!

[Momof3gurlz]

@Ozark_Kid I too am sorry about your diagnosis.  As others have said, take it all one day at a time. Your positive attitude will most definitely be a help to both yourself and your family. I’ll also say you’re fortunate to have two daughters who are OT’s as it’s important to have people who can advocate for you through Dr visits, treatments, etc.  

You and your beautiful family are in my thoughts. 

[jagsfan]

10 hours ago, bobmacliberty said:

 

Some people believe that the best thing to do with a new phone is to start from scratch and reload any apps that you need as you need them, rather than restore everything.  It's a way to clean out all of the old apps that you previously installed but no longer really need.  Personally, I take the reload everything approach.  That's why I'm paying for all of that phone memory.

There were some I didn’t bother with. I just reinstalled the apps I actually use. 
And then moved them all around to get them in approximately the same place they were. 

[jagsfan]

1 hour ago, Ozark_Kid said:

Thanks for the advice.   I have been for the most part staying away from Google on this ride.  I read bits and pieces when I didn't know terms like motor neuron, etc but quickly end the reading.  It has been harder for my youngest DD because she is an OT at a local nursing home.  My oldest DD is also an OT and has been aggressive in researching and helping out.  She has joined us in our Neurologist visits and takes pages off notes.  Something funny yesterday.   After our appointment we went to our grandson’s soccer game.  As we were leaving my SIL carried our chairs to the car.  He said to Sharon after I got in the car,  I told Sarah not to cry...... then he started crying 😢.   So much for holding back.  Sharon told him it's OK so don't tell Sarah she can't cry.

If Jesus didn't hold back when he wept, who are we to ask someone to hold back.  I understand where my SIL was coming from.   My SIL is special. 

 

I know that you will face this challenge and keep strong as you fight hard. 
The medical world  makes strides every day in treating what was untreatable. 
Our  prayers and well wishes will be ongoing. 

[Ozark_Kid]

@bobmacliberty

Do you remember I replaced a bad drive on my NAS last month?  I replaced a 3TB with a 4TB.  As expected due to the raid setup the 4tb was restricted to the 3tb.  This week I replaced the good 3tb with a new 4tb.  I was happy to see it adjusted and now gives me 4tb of storage.

I have a ton of mp3 music on it.  I learned that it's possible to like Alexa to the audio player on the NAS.  I might try that.  I wish I could link it to the Highlander. 

[Ocean Boy]

27 minutes ago, jagsfan said:

There were some I didn’t bother with. I just reinstalled the apps I actually use. 
And then moved them all around to get them in approximately the same place they were. 

I hate moving apps because it seems everytime I move one another one goes where I don't want it to.😡

[Ocean Boy]

I just found what must be a blast email from CC. It says it gas been awhile since I've been here and they miss me.😄😄😄

[Ozark_Kid]

1 minute ago, Ocean Boy said:

I hate moving apps because it seems everytime I move one another one goes where I don't want it to.😡

I hate moving them because sometimes the password doesn't work and it's hard to get it back.

[grapau27]

4 hours ago, Ozark_Kid said:

I had my follow-up visit yesterday with my neurologist to review the MRIs taken last week.  I have been diagnosed with having ALS.  It's hard for me to share the news because I like to post things that brings a smile to my friends here on CC.  I know that things will be challenging but for now things are good.  Thanks for all the prayers. 

I'm saddened to hear your diagnosis John.

Pauline and I send you our prayers 🙏 and best wishes.

Graham.