end of the road

[Windwalker]

Reading about the cases where MS kills by complications due to inactivity like bedsores, pneumonia, etc., as well as some stories shared on this MB from caregivers put in the position of caring for someone in this condition. Are these people still "there"? Can they think, reason, feel, read? If you've missed the long term disability train and you have average retirement savings do you wind up in a state run nursing home?

I'm nearing what your referring to as "the end of the road". I've thought a lot about it. To address the first issue; It depends...if your me, you will remain very sharp cognitively but be physically totally bedridden. If like many with severe Progressive MS, there is significant brain atrophy, then most likely you would be "out of it".

The second issue is one I am dealing with now. Unless you have retirement savings that can handle $70 - $90 thousand a year, you will be dependent on Medicaid. You can go to a nursing home that will accept the Medicaid. Cheaper options are having a live in caregiver but you need a residence for that. Live in caregivers get approx. $700 week. Factor housing and living expenses on top of that. If I had no loved one to take care of me, the live in caregiver option would be what I want.

There are conditions...at what point can a live in caregiver or loved one not be able to do it anymore? When I would get here, another decision comes into play.

[Sissy]

Well call me stupid or blind! I just started a new post, just before I found this one...I am sitting here having heart palpitations and wondering if it is normal with MS!! I was told I was lucky because MS won't kill you??? Boy do I feel stupid!
Why am I taking this expensive medications? They aren't going to help are they? I'm 64 and my DH is almost 75. We can't afford to buy groceries or get our truck inspected, but I am paying out a ton of money on medicine to no avail!

I'm having to turn off my internet this week because because when the foundation that was helping me pay for my MS med heard that I had Pt D medicare they cut me off! As has 4 other places. Why am I bothering??

[Thinkimjob]

Well, Sissy, you're bothering because you are still alive, and you still have hope. And you've still got your sense of humour. And your husband loves you.

Me myself, I wish I could see the benefit of dmds. When I was first diagnosed, ooh 15 years ago, everyone I knew kept talking about let's call her Jane, who wouldn't take any dmds. "Oh she's not giving herself a chance, if you take them you'll be much better."

Mmmm. She died of "MS complications" a few years back. She was 49. She'd had MS for more than 20 years. I'm 43, and honestly I can't see things turning out too much different. I've taken the drugs from week one, and I am basically stuffed.

So why bother? In my case, the drugs are $1 a shot. I really wish I knew whether it is doing anything to help. Without hope, there's nothing, so I keep hoping.

Well, that was cheery. Sorry.

[Sissy]

Thinkimjob: How often do you take the shots? They want me to pay $250+ a mo for my Gilenya co/pay alone my other meds are abt $250.a mo. My SS check $850.00 won't cover my meds, gro, insurance,gas, elec bill, water etc.

My DH retirement check barely cover the mortgage, car insurance and his meds.

He is more upset than I am that I have to cancel my internet service. Just like this! No more MSWorld Forums! Or emails or on line work.

MS IS KILLING US THIS WAY TOO!

[Thinkimjob]

Australia has a pharmaceutical benefit fund, so Copaxone costs about $32 a month.
I used to be very compliant, but it's hard to keep taking a drug that to the naked eye is not helping. Yes, I know, go and try another one, but to me, it's like a broken pencil - no point.

[misslux]

Sissy, have you contact Gilenya for copay assistance?

http://www.gilenya.com/c/paying-for-gilenya

[Sissy]

misslux, Thank you, yes they were helping me until last friday when they foundout that I am now getting PT D medicare and told me they could no longer help, as they consider " The PT D" the only help you need. Same way with NORD and every single lead I was given and followed up on.

I had cards from 5 different companies for meds that my Drs gave me. They helped me save $250 a month. But when I was put on Pt D on Jan 1st I got the same message from every one of them. I take 2 different insulin meds a day and Pt D will not pay for the syringes or needles either!! Those can run up to $175 a mo. How can you take insulin without them???

My co/pay went from $130 to $500+ overnight. And don't forget about the donut-hole!!

[misslux]

Ugh, I'm sorry. What a nightmare.

[Thinkimjob]

That's just a nightmare, Sissy.

Now I am not suggesting anything at all, but in Australia, they give heroin addicts free needles. I remember being ropable when I had to pay for syringes, swabs and disposal containers. I was on Beta at the time.

Copaxone, it's like all this and a free set of steak knives. Good luck.