Wrong PET Scan

Thank you. I'm glad I took the time to go get the results.

A little more back story: A couple of nights ago I heard from an (out of state) friend I hadn't spoken to in a number of months. When exchanging stories she talked about working in a Leqembi infusion center. Part of her role is submitting the correct documentation for Medicare reimbursement.

This blew my mind. (A) That her knowledge was so relevant and (B) that Medicare could possibly cover (most of) the cost. One big downside for considering this treatment was cost.

This led to a chain of discussions with my siblings before approaching DB. DB is still working, though not at full capacity. If he were to take disability retirement, go on SSDI, he would then be Medicare eligible. After getting their feedback I approached DB and his wife. She initially had been eager for DB to look into this. I was more hesitant re side affects, but after talking to friend I became comfortable that they were doing a good job prescreening those more likely to have side affects.

DB was ready to pursue disability if the tests showed he was a candidate to benefit from the infusion.

So I was immersed in all this the last few days trying to make sure family was up to speed on the info needed and the decisions to be made.

So...with all that I was hyper aware of the type of test we were waiting on.

HB thanks for the information. Based on the URL it seems that info was as of 2022.

Though the time frame may have changed, the point of becoming familiar with all those dates and coordinating is important.

I will have to go back and check my sources. My understanding is that if ALZ is the reason for disability, there is an expedited schedule. I'm thinking I read between 90 and 180 days. The CELA had provided us names of a few disability lawyers. My understanding is there was a recent change the Medicare is 60 days after that. On the last point I remember that being discussed with the CELA. It had been 24 months which would have been moot as he will turn 65 in the next 24 months. The lawyer corrected me on that point.

I was talking to my uncle, and he pointed out this is the type of things you have built up your savings for. DB has assets he can tap for this. It would seem a good investment if it leads to treatment that allows him to stay in early stages longer.

The way I perceive this the medication is most promising if started early. My hope is the PET scan can confirm this is still relatively early in the progress of the disease. Catching it early was also emphasized by the friend I spoke to.

Thanks for posting that. I remember reading posts here about the groups not benefiting, Our heritage (I'm the DNA nerd in the family) is mostly European UK countries. This does put DB in the cohort showing most promise. I was reading an article from Yale Medicine (though I didn't save the link) that didn't quote that 6 month upper limit. I'll have to do more reading on that point.

Victoria,

Thanks for your input and those links. I'll come back this afternoon and read through the information. I'll have to check the names we were given to see if a free or low cost consult is available. I agree with your points that with the various dependencies we don't want to have any avoidable hiccups in the timeline.

I've done a little research on hiring a disability lawyer here in California. From what I've read, the fee is capped at $7,200 or 25% of recovery of back pay, which ever is less.

I'm a planner. So I'm looking in to the what if's of pursuing disability. In my latest conversation with YB, who works with DB, there is no pressure to push DB out. Though he isn't performing at full capacity, he's still contributing. So we may not need to jump on this right away.

For anyone who has California experience, in the event that his performance deteriorates, do you know whether there is any value in applying for California SDI as a stepping stone to federal SDI, or just going to the Federal program is wiser? (When the time comes we'll ask a lawyer, but thought I'd see if anyone in this group already knew.)

Victoria,

Thanks for your insights. We did see the CELA, got names of disability lawyers, and he has an estate plan. I shirked a little bit when the plan was presented by the CELA in that I did not read the section on future plans. (My signficant other has his own health crisis, and I was more tuned in to that at the time.) I plan to go through and read it (documentation from the CELA) more thoroughly this week. It seems to me obvious that we'll need to engage a disability lawyer, but we have a little breathing room on that task. But I hear your caution not to delay this. I'm think weeks not months as far as getting emersed in this.

Victoria, your empolyment cautions are all good advice for anyone reading along. For example if this were me or older brother in his working days that would come with many exclamation points. But DB's employment is a very unique situation.

I wholeheartedly agree with the need to plan ahead.

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This is sort of a side note but not really. Often in this forum the advice is offered to measure your LO (re stages) in terms of their worst day not their best day. Last Oct. DB just could not communicate in email. This was evidenced by incomplete thoughts, repeating himself, and incorrect word choices. In my face to face experience with him this had gotten much better with Donezipil. He gets a well done in my book for the following. Last night he took photos and texted me all his rx bottles. He then typed up each one with name of RX dosing amount, and dosing instructions. He followed up with a phone call to me to highlight the above had been sent, and to make clear there is 14 days left on the one in lowest supply.

I handled the phone call to request the refills. (He still gets tongue tied at moments, but these come less often.) Anyways, the planning ahead and completing a multistep task, I took as good signs of his current abilities.

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I had mentioned this in a posting elsewhere on site. Oldest brother called Friday to let me know he scored a 25 on a MoCA test. He has a follow-up blood test scheduled for later this month.

As a precaution, I had an MMSE done last week at a doctor's appointment. I passed. I wanted to make sure if there was any urgency for a back up to me. As always this is a necessity, but there is no fire burning.

YB has asked that I start sending updates on the tasks I'm performing and the references I'm finding. He says I've kind of become the reference library in the family, and he wants to make sure he and OB have access to the information in the event I'm unavailable.

Iris,

In the work enviroment I was in sick pay was provided by the employer. CA SDI was something I applied for, it was a state program. Though funding differs for unemployment, perhaps we can think of the process of applying for this benefit through the state in the same way. (On a W-2, to my memory, it was always the box on the far right bottom line for a state level tax.) AS I UNDERSTAND IT, THERE IS A QUALIFYING PERIOD, benefits don't kick in day 1. For me, it seems natural to want to collect from this benfit you've been paying into all those years. But I'm under the impression this may not pan out logically to file for this during the waiting period for SSDI to kick in after leaving employment. It's starting to look like we'll have the documentation we'll need for SSDI and won't need a buffer period while getting the documentation together. But this is something I need to look at to really understand the pros and cons.

As far as the employment situation, a family business is a pretty close description. Because the situation is unique I avoid being too specific in a public forum. DB's early decline seemed pretty steep and earlier YB questioned how much longer he'd be contributing. Things have stabalized, and from a communication stand point they have improved since donezipil. YB is comfortable with wait and see. YB is the onsite link to the owner. The business offers nothing in the way of retirement benefits under ordinary circumstances. DB has been wise and invested so there are assets there.

Personal side note, my company had a profit sharing plan with an option of rolling part of it out each year that could be invested in an IRA without any tax consequences. DB had pointed out that for a few years in row my plan had underperformed the market. He was instrumental in getting me to roll out the money, and teaching me how to invest in mutual funds. That was key to me coming up with a down payment on my home and eventually paying off the mortgage early in my retirement. My line of work took big hits during the push to out source and send jobs overseas in the early 2000's (I had about 28 years with the company at that time). Long story short, he coached me in to taking out a line of credit that got me though a period of unemployment and allowed me the room to wait for a postion with the company that had outsourced me. I got back in with that employer and was grandfathered back into their retirement program. About 7 years later I was able to retire young at age 56.

Anyways we can look at me helping him now as karma. He's often expressed his thanks, but I've told him he's been pre-paying me for decades.

Re your medicare question, he has about a year before he is medicare qualified. As I understand it, SSDI would pay what you would get as Soc Sec at full retirement age. By my math, he'd be down about 300 a month vs his current monthly income.

Iris, I'm sorry it took me so long to respond. I had something in draft, but I guess I got interrupted. I was paying CA SDI on my paychecks starting in the late 70's. I think it was my HR department that pointed out how to file for it when I went out on maternity leave.

What a day. Earlier I was called by the Neurologist office to come in and sign paperwork supplied by the company that make Leqembi, for the purpose of determining what exactly his share of the cost would be based on his insurance copays, out of pocket max etc. I discussed I was willing to come in and sign on DB's behalf, but he wouldn't want to begin infusions until he got the 2nd opinion from the VA. She asked if the VA was going to pay. When this came up before, my first reaction had been that if the wouldn't run the PET Scan necessary to pursue this course of treatment, it was unlikely they'd cover it - but I hadn't checked it out. I did some googling and found some news articles in the last year or two indicating the VA had approved use of Lequembi for the VA patients. I called the social worker at the local VA office to ask how I'd pursue this. He confirmed we hadn't had our first VA neurologist appointment. He wanted me to obtain notes from the private neurologist on DB's current status, the pharma company paperwork, and copy of the recent report from the PET scan. I did all that and dropped it off. My understanding is that it will be reviewed by his PCP in the local office, and then faxed to the neurologist at the Long Beach, VA. There's hope it will be covered.

Thanks. I'm still afraid the hiccup will be VA won't consider him 100 pct disabled and pick up full costs while still employed. He was willing to "retire" if that got him to Medicare early. We may need to revisit that conversation if it affects VA disability rating.