Race against time

[palmtree]

My MS has caused a lot of the symptoms similar to everyone else. I'm tired. I have muscle cramps, tremors, memory problems and walk with a cane.

But the problem is I can no longer work and my last inheritance is almost gone. The debts keep mounting up because my only income is SSDI.

They have given me a lot of assistance with medical co,payments which I am very grateful for but the months keep going by and every month means digging deeper.

It's a race against the clock to die before I'm out on the street or stuck in a nursing home, which I could not bear. I feel sad because the Tysabri has done a good job of controlling my MS. I'm not committing suicide. My body is just giving out from the strain.

Is anyone else in a similar position?

[Dale76]

It sounds like you have it worse but yes I'm heading in that direction, I feel like I will die within 5 yrs or less... I can still walk but my guts are fried and I only sleep 4 hrs a night due to pain.

Do you not have family that will take care of you? I have that at least but I really don't want to burden them either. It is bad enough I'm not able to pull my weight now.

[nes]

palmtree,

i've been on and off these forums for many years, so if you've shared your age or more about your medical history, i don't remember reading it. i saw from your profile that you were officially diagnosed about 4 years ago. what type of ms do you have? are you mobile?

your story breaks my heart. honestly, my partner would be in a similar situation, although she wasn't exactly waiting to die b/c she is in her mid-30s, but her ms has been very aggressive. a couple of years ago, she lost the ability to walk and her legs became so spastic that we couldn't easily transfer her. even her specialist at johns hopkins was running out of ideas as she continued to relapse. tysabri was discussed but she was jcv positive and at high risk due to her heavy use of chemo in the past.

i took to clinicaltrials.gov and found a trial using a combination of chemo and stem cells to build a new immune system. since then, she has been off all dmds, returned to walking and all of her activities of daily living, and generally regained an independent productive life again. i am not being paid to share our story although i can't stop saying enough good. dr. richard burt is a top-rate doctor at northwestern in chicago and he is running a phase 3 trial, although he treats people off-study who he feels could benefit. the results of his years of data are fantastic. the hospital is state-of-the-art. and the procedure is covered by medicare. i'm on a mission to spread the word since mainstream ms media is not publicizing his work (maybe b/c it means no need for dmds?). anyway, my profile has more info and links.

i feel for you. i don't think i'm anyone special, but i honestly don't think my partner could have done all this research while suffering so much. it helps to have advocates fighting. also, patient access network foundation has a patient assistance program for those with ms, maybe they can help. you can find more info on their website.

[palmtree]

I just want to add that I'm not soliciting money so please don't misunderstand.

[palmtree]

Nes,

Your post brought me to tears. Compassion goes a long way. That's a great story about the success with Dr. Burt. I'm a fan of him, too. I wrote him but I didn't seem to qualify. I've never heard back.

Just to answer some of your questions, I'm a 61 year old woman. I was dx four years ago with RRMS. Then, my neuro thought I was SPMS. Now she's not sure. I can still walk with a cane but very awkwardly. I'm getting terrible tremors in my hands that are no longer responding to Primidone, which was helping before. Muscle cramps are very bad and I have to cath.

I have a son who I adore. I just can't bear to burden him. He just finished all of his schooling, got a good job and a mountain of student loan debt. If I ask anything from him, it will set his life back. He will never be able to marry and continue to fulfill his dreams. I like being alive because there are always new and interesting things to experience. But, if it is my time, I am at peace with the life I've lived.

[dyin_myelin]

Could your SSDI help to defray costs for your son? Help to pay a mortgage and bills? Maybe you could get a home health aide to cook and shop-he could dig into meals once she hits the road, nobody would be the wiser. Any woman who would kick him to the curb because he was caretaking someone in his immediate family, well you've probably just filtered someone not worth having around anyway. Probably the same type of person who would walk away if he himself got sick. Why not have a conversation with him, he's young enough where his body language and tone will let you know if he's happy or reluctant to help.

[rdmc]

Nes,

Your post brought me to tears. Compassion goes a long way. That's a great story about the success with Dr. Burt. I'm a fan of him, too. I wrote him but I didn't seem to qualify. I've never heard back.

Just to answer some of your questions, I'm a 61 year old woman. I was dx four years ago with RRMS. Then, my neuro thought I was SPMS. Now she's not sure. I can still walk with a cane but very awkwardly. I'm getting terrible tremors in my hands that are no longer responding to Primidone, which was helping before. Muscle cramps are very bad and I have to cath.

I have a son who I adore. I just can't bear to burden him. He just finished all of his schooling, got a good job and a mountain of student loan debt. If I ask anything from him, it will set his life back. He will never be able to marry and continue to fulfill his dreams. I like being alive because there are always new and interesting things to experience. But, if it is my time, I am at peace with the life I've lived.

Hi Palmtree,

So sorry for the situation you find yourself in. I'm your age and my MS pretty much dictates my days, but I have been able to keep my job, I work from home.

You mentioned you no longer worked, so I'm assuming you worked in the past. Will you be eligible for Social Security Benefits when you reach 62? I haven't looked into it, but I have a couple friends who chose to start receiving Social Security when they were that age. I have no idea if SS would pay more than SSDI, and I don't think Medicare kicks in until you're 65. Do you have a social worker working with you, maybe he/she could navigate some other options as well.

Hang in there!

[nes]

hi again palmtree,

certainly don't want to wear you out, but if you never heard back from dr. burt i would call their office (info below). if you officially did not qualify, i would inquire as to why. sometimes they need to see disease activity on a mri. people who don't qualify one month, may qualify another if their status changes.

my partner technically did not meet the study parameters, so she was treated off-study. actually, she was in a grey area...maybe rrms, maybe spms...and by the time she met with dr. burt, she had been confined to wheelchair for months...we pried her out of the wheelchair during the initial evaluation and with terrible balance and tons of effort, she made her way painfully down the hall with me trailing with her wheelchair. it took her about 15 minutes to "walk" a matter of feet gripping a walker.

dr. burt was clear that she was borderline, but i think b/c of all the mri activity, he felt he could help. actually, during the initial consult, he admitted her to northwestern's hospital for on the spot chemo b/c he was so worried about her condition. we got lucky. not everybody sees the level of improvement my partner did, but many do. if you check out the fb group, so many are indebted to dr. burt. i would follow-up. i pestered them a bit out of desperation and am glad i did.

you're too young to wait to die! are you part of a church community? i know many congregations call on members to make house calls or offer up time. working with agencies and families can be tough, but you would be surprised at how many kind people are out there.

....feel free to connect with me if you want to chat or need a boost. i've been there before when there doesn't seem to be a light at the end of the tunnel. you don't have to go it alone.

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[frosty123]

Palmtree, I am sorry to hear of your concerns and think so many of us share in the fear of burdening our children.

My mom died of ALS in 1986, my sister and I shared in her care at home, it was one of the most rewarding periods in my life. Please don't assume that your son wouldn't have a similar life-changing/enhancing experience by being a caregiver to you.

[MSW1963]

palmtree, I'm headed quickly toward the 'other side', the financial and physical downward side of the mountain of loss, debt, obstacles and difficulties MS has thrown my way. Loss of a lucrative income mid-life, 25% SS penalty,
+25%? pension plan penalty, both for 'early retirement'. Yep, I'm living the life.

I felt very lucky when my car died that I had access to a lump sum pension distribution for a newer, used car. With the newer car I've had the satisfaction of knowing my college age child had safe, reliable transportation to and from school and her PT job.

Orthodontia treatment for dd took another chunk from the IRA roll over from the pension plan distribution. Monday DD celebrated 1st wk post orthodontia treatment, a georgous smile sans braces, yah!. My over due dental care will take care of what little of the IRA that remains.

I continue to count small favors, blessings that come my way. Most importantly, a daughter who will complete her college education in the next year. A young woman who is happy, healthy, and well adjusted with a big life ahead.

I'm feeling panic set in as the the balance shrinks, debts that seem to grow exponentially.

[palmtree]

I just wrote a long reply to everyone and accidentally deleted the whole thing. I will take all of your suggestions as food for thought.

Nes, I'll give Dr. Burt a call in the morning. And msw1963, I hear you. Having wonderful successful children is what every parent wants. I, too, am grateful that my son has made a good life for himself. It sounds like you are in a similar situation. The balance shrinks and debt grows exponentially. When all of the assets go towards servicing the debt that's when we are bankrupt.

dying-myelin, I didn't exactly understand what you meant in your post. I have SSDI and Medicare. It's just barely covers the rent here. Maybe I should move to a place with a lower cost of living and some good churches. Here, churches are confined to a few extremist doctrines.

Thank you everyone. I don't feel so alone in all this right now.

[pennstater]

Palm tree,

I am so sorry to hear of your fears and reality. I agree that if any future girl would not consider your son because he helps to care for his mom is not a girl you want for your son.

I actually dated a guy in college that came from a bad section of a major city. His Mom had MS and he had a brother 7 years younger. His Dad took off when he was 8. He was on scholarship, worked part time and sent money home. After graduation, he took a job in the Midwest and moved his Mom and brother with him. I, as well as all my friends had the utmost respect for him. It didn't work out forces, but that is not the reason. To this day, he is still one of the people I admire most.

While I understand that you don't want to be a burden to your son, I think you should have a discussion with him. He may be able to even help with reviewing options and financial decisions.

My heart goes out to you.

[Cat Mom]

I'm sorry I'm not much help, I live in Canada so unfamiliar with SSDI but just want to tell you you're not alone.

I get half my pay from CPP (a pension) 3rd last business day in the month and the other half from insurance on the last day of the month.

I actually arrived at Oct 1 with zero money, after paying bills! Oct is a loooooooooong month!

I wish you good luck with everything, hang in there!
Jen

[palmtree]

Now I understand what you were saying. My son has a girlfriend now. She is a beaititul girl from Holland. The two of them fly back and forth to see each other. I like his girlfriend. She is very family oriented and it comes naturally for her to take care of elders. However, if he marries her, she would have both me and my mother to take care of. It would be wonderful to have a woman to help out. The problem is she has no career. In Holland everyone has a guaranteed income so there is no incentive to work. Thats ok except in the US
a family cannot survive on one income. She wouldn't reject my son if he takes care of his mother but i don't know what she would be like if he married her. She wants to get married but he has been holding her off. Who knows maybe They will make an engagement soon.

[Evolvn916]

Palmtree,

My goodness. My heart goes out to you. I know that death is a reality for everyone. But, please don't give up just yet. You are alive....keep fighting and keep living! Try and look for small things to lift your spirits and move your thoughts away from death. Take it one day at a time. I know it can be difficult. Just know that there is a village of people that are here to lift you up. You are in my prayers.