PALS chat thread ( PALS only please)

[lisa g]

Kevin,
I so understand where you're coming from. Like you I still have full functionality, but I feel like the life is being sucked out of me. I think with the fresh diagnosis we're still learning more to mourn what is to come. I'm now going through retesting for a second opinion and am dreading the upcoming EMG to hear the words again "you have ALS ". I'm still trying to digest the first diagnosis!

Go and enjoy your trip with your family, make some memories. Isn't that what life's all about?

 

[lisa g]

Received my "Medicare " card in the mail yesterday. That was a dose of reality! In the real world I wouldn't have qualified for it for another 5 years

 

[Signe]

Received my "Medicare " card in the mail yesterday. That was a dose of reality! In the real world I wouldn't have qualified for it for another 5 years

Glad you get some financial assistance. Can I ask your age? I'm 59, but I don't qualify as I don't have enough quarters paid in, only 8 out of last 20, need 10.

 

[lisa g]

I'm 60. Luckily I retired with 30 years of being a government employee so I can't complain about the benefits I carried with me. The Medicare will kick start in October along with disability. I am one of the lucky ones to have a pension and my health insurance.

 

[Nikki J]

Not having enough work credits stinks. It happened to my sister too. She had been a SAHM while her daughter was little and was just about to return to work when ALS started. There isn’t any way round it unfortunately

 

[lisa g]

Funny thing now, not that it was funny then.
When my neuro came in to the room to give me the diagnosis (she sat outside the waiting room for 20 minutes preparing herself.)
My first reaction was disbelief, fear and then the tears that the neuro shared with me.
After it all sank in my first response was, Hell no the government is going to keep all the money I worked my a** off for all these years!
I don't know who was more surprised by the comment my husband or the neuro. Who thinks of that when they're being told they're terminal?
After a moment my husband smiled and said that's my wife, not thinking about dying worrying that the government is going to keep her money
Crazy what goes through your mind at a time like that.

 

[Signe]

Funny thing now, not that it was funny then.
When my neuro came in to the room to give me the diagnosis (she sat outside the waiting room for 20 minutes preparing herself.)
My first reaction was disbelief, fear and then the tears that the neuro shared with me.
After it all sank in my first response was, Hell no the government is going to keep all the money I worked my a** off for all these years!
I don't know who was more surprised by the comment my husband or the neuro. Who thinks of that when they're being told they're terminal?
After a moment my husband smiled and said that's my wife, not thinking about dying worrying that the government is going to keep her money
Crazy what goes through your mind at a time like that.

That's funny, weirdly funny. I've had similar thoughts, after all I had paid in for over 30 years.

 

[Signe]

Funny thing now, not that it was funny then.
When my neuro came in to the room to give me the diagnosis (she sat outside the waiting room for 20 minutes preparing herself.)
My first reaction was disbelief, fear and then the tears that the neuro shared with me.
After it all sank in my first response was, Hell no the government is going to keep all the money I worked my a** off for all these years!
I don't know who was more surprised by the comment my husband or the neuro. Who thinks of that when they're being told they're terminal?
After a moment my husband smiled and said that's my wife, not thinking about dying worrying that the government is going to keep her money
Crazy what goes through your mind at a time like that.

That's funny, weirdly funny. I've had similar thoughts, after all I had paid in for over 30 years.

I'm 60. Luckily I retired with 30 years of being a government employee so I can't complain about the benefits I carried with me. The Medicare will kick start in October along with disability. I am one of the lucky ones to have a pension and my health insurance.

 

[KevinM]

Received my "Medicare " card in the mail yesterday. That was a dose of reality! In the real world I wouldn't have qualified for it for another 5 years

We are definitely on the same track, Lisa. Got mine two days ago. Everything that confirms the “terminal” nature of this—short/long term disability, approval in the blink of an eye for SSDI, now the card—makes this really, really, real. K

 

[lisa g]

Welcome to the crazy train

 

[KimT]

I started collecting SSDI at age 60. I had to make a huge decision and that was whether to take my State pension as a lump sum or get $5,000 a month with COLA every year. The decision was terrible. Given the COLA my break even would have been about 8-9 years so I took the lump sum and converted it to an IRA. I probably should have invested half of the lump sum in an indexed fund but I chose to keep it safe in CDs paying around 2.5%. The interest pays for my HOA dues and my property taxes and the rest is earmarked for caregiving and a quality hospital bed with a ceiling track lift system. This isn't the retirement I planned. My SSDI and long-term disability insurance cover my monthly expenses but the LTD will stop in 2.5 years. Then I'll have to tap into my lump sum even for monthly expenses.

I think what irritates me the most is that my Medicare Supplement (in Florida) costs around $600 a month. They can charge up to three times the regular rate for people under 65 and they did. Only some states are allowed to do this. If I had moved to NY, the same supplement would have cost half because they spread the expense.

If I were rich or had a large family I wouldn't lose sleep at night. As it is, my finances scare me more than the disease.

 

[lisa g]

Kim- I sympathize with you and everyone else that has to navigate this beast alone and on one income. I can't even think how much stress you carry.
I am so grateful that both my husband and I are both retired government employees. We were always very frugal and saved as much as we could while we worked contributing to our 401k plan. Now we're so glad we did and so far have never had the need to touch them. I'm sure in the future that will change.

 

[blitzc]

Received my "Medicare " card in the mail yesterday.

Lisa, mine just arrived last week as well! I am activated November 1. It was a weird moment..."the government agrees I am doomed".

Like many of you, I am not eligible for SS Disability, only Medicare having never paid into SS as a teacher with a state retirement plan. I also contributed into a nice 403 (b) hoping to spend it on travel during my retirement. Now our plans are to use it for home care when I am not able to be alone. Kind of sucks!

 

[lisa g]

Yup that was the plan....sock it away for leisure and travel during retirement. Now....it looks like wheelchairs, lifts and all the other goodies that pop up
Definitely not the golden years we all anticipated.
Cathy, definitely doesn't kinda suck it definitely sucks!

 

[Signe]

Yes, it sucks, not the retirement any of us planned on. I pray I don't exhaust my savings. Thank God I didn't cash out my life insurance that I had thought about doing. God must have interceded on my behalf.