Calling all Seniors - aging and MS

[mtnwillow]

Happy Birthday FoggyRose!

[SANDRAB]

I've missed you guys

I took a break from the web for a little while. This forum makes me think a lot. I'm only 53 been diagnosed since 2001. Now I have PPRMS. The reason I took a break was because I was so depressed. Today is the day I'm coming back. Thank God I'm still here. I had forgotten how to be nice. I hope I'm going to do better.

[lydialou]

Hey SandraB :-)

Glad you are back. Don't worry about forgetting how to be nice. I guess that no one told you that when you turn 50 and have MS that you get a number of tickets that give permission for you to be cranky. Some crankiness takes two of your tickets.

When you turn 60, you should get another batch of them!



lydialou

[seasoned]

Joining in and sharing

Hi, I'm posting for the first time and have just read this thread, which I find real, honest, and loving. I have spms and was dx in 1980 and have had MS since mid 70s. Now I'm in the aging group at 71. For most of the time I've been able to get by without acknowledging to the outside world that I have MS and when I did I still kept active and involved. In the past couple of years, though, I've declined and cannot get out for more than a few feet without a wheelchair and when I walk it's with a crunched and bent posture. However, like most of you and throughout most of my life, I've learned to adapt and to see the very good parts of my life. And like some of you, I've struggled with depression and times of hopelessness. I agree with you--the best way to deal with this disease is to accept, adapt, and look at the wonderful gifts life is giving us. I sometimes need help and sometimes can offer help. Glad to join you.

[502E79]

seasoned...

Glad to have you. And thanks for sharing! Welcome to MSW.

Jer

[foggyrose]

Hmmm....I didn't realize two months have gone by since I was here last. Better late than never -- thanks for the birthday well wishes. My "kids" responded as expected....one called, one HB on facebook and the other nothing. Oh well. Anyway....

It was good reading this thread over again. I'm very thankful for all of your positive thoughts and comments while not denying we have some really bad/down days thrown in too. The bad have taken over the good, but those rare good days are more precious than ever. Thank you all so much for your friendship and understanding.

[palmtree]

This question has such a gentle feeling to it. It was a comfort to me to read it. I wasn't diagnosed until age 57, quickly determined to be secondary progressive, and I'm soon to be 59.

Before my diagnosis, I always enjoyed the role of comforting my younger friends. I liked being the old wise person in the room. After my diagnosis, I felt like I had grown beyond many of the things that trouble young people. Maybe having MS would be easier for me.

What I've found in this 18 or so months of being a sick person, has rocked me to the core. I feel like I am in a crucible. I have been full of fear and my fears keep coming true.

The thing that is the most disheartening, is that well meaning people like to tell me about their 101 year old friend who still lives a full life. I've always thought 59 was plenty old--especially when I have a bad disease on top of arthritis in the knee, carpel tunnel, high blood pressure...

Being viewed as an older person worthy of respect is so important. This thread has opened my eyes. I'm going to started commanding it, even if I have start banging a cane.

[Seasha]

Hi palmtree!!
I know what you mean about growing beyond the things that trouble younger people, altho we have our own set of troubles -- if we allow them to trouble us!

Being viewed as an older person worthy of respect is so important. This thread has opened my eyes. I'm going to started commanding it, even if I have start banging a cane.

Your comment here made me laugh and reminds me of a favorite quote, called "When I am an Old Woman (or Man!) by Jenny Joseph. You all may have heard this before, but it bears repeating:



"When I am an old woman, I shall wear purple

with a red hat that doesn't go, and doesn't suit me.

And I shall spend my pension on brandy and summer gloves

and satin candles, and say we've no money for butter.

I shall sit down on the pavement when I am tired

and gobble up samples in shops and press alarm bells

and run my stick along the public railings

and make up for the sobriety of my youth.

I shall go out in my slippers in the rain

and pick the flowers in other people's gardens

and learn to spit.



You can wear terrible shirts and grow more fat

and eat three pounds of sausages at a go

or only bread and pickles for a week

and hoard pens and pencils and beer nuts and things in boxes.



But now we must have clothes that keep us dry

and pay our rent and not swear in the street

and set a good example for the children.

We must have friends to dinner and read the papers.

But maybe I ought to practice a little now?

So people who know me are not too shocked and surprised

When suddenly I am old, and start to wear purple."


So, palmtree and all of us cane bearers - Bang that cane and run your cane along public railings!!

[skoshee]

PROFOUND STATEMENT TO ME RECENTLY

I am 62, diagnosed two years ago. Lost everything as not able to work due to fatigue and cognative issues, so on SSDI and Medicare. Made life simple living in my RV, which I love in a beautiful resort lifestyle, although can't golf like I would liek to in the heat. I met someone recently who I told I have MS and he replied back "you don't have MS, your body does". I thought that was very thought provoking and profound. I did tell him yesterday, how it was a great statement!! Just wanted to share! GOOD LUCK TO ALL AND GOD BLESS

[Thomas Jackson]

Skoshee , I really liked that remark. Thanks

[Rachaels Rainbows]

Aging and MS...hmm that is an interesting question since I was diagnosed at age 60! I am now almost seventy and some days I feel older than dirt and other days, not so much.

I started out my particular MS journey with the doctors thinking I was having a heart attack with numbness in my right side and the trip had been a steady progression until I am permanently in a wheelchair.

My doctors and I always have the interesting challenge of determining whether my various symptoms: incontinence, lymphatic problems, and countless other what-have-yous are old age or MS.

I have had cataracts removed. I have had malignant melanoma with the amputation of a toe. Both of which have nothing to do with MS.
However, as I mentioned, I am also incontinent. MS? maybe. Old age, possibly.

So, aging with MS can be an interesting passage.

I plan on dying in my own bed at a very old age

[anneth121]

AGE AND PPMS STINKS

AM 65 AND HAVE PPMS FOR 14 YEARS. HAD TO RETIRE EARLY FROM GREAT JOB AND GO ON SS DISABILITY. EVEN CRIED ONCE WITH A SS REP WHEN SHE TOLD ME I STILL HAD 6 MONTHS TO PAY FOR PRIVATE INSURANCE!

AFTER 26 YEARS OF MARRIAGE MY LOVELY HUSBAND FOUND A NEW GIRLFRIEND AND LEFT ME. LEFT THE STATE AND TRIED TO SNEAK BY ME THE FACT THAT AFTER 1 YEAR ABSENCE IN STATE I WOULD LOSE ALL RIGHTS. MY SON TOLD ME TO GET A LAWYER FAST. GET $2000.00 A MONTH ALIMONY TILL I DIE, THANKS TO MY LAWYER. MY EX HAS LOTS OF MONEY.

HAVE TWO GROWN KIDS AND THREE G-KIDS BUT SON HAS LIVED IN TAIWAN FOR 15 YEARS. NO HELP THERE. DAUGHTER THINKS I WILL BE CURED IF I EAT ORGANIC VEGGIES AND LEAVES. SINCE I HAVE LESSIONS IN MY BRAIN AND SPINE SHE HAS FINALLY STOPPED E-MAILING ME DIETS. LAST TIME I SAW HER SHE ASKED WHY I WAS SITTING IN MY POWER WHEELCHAIR CROOKED. TOLD HER MY SPINE WAS MESSED UP. SHE FINALLY QUIT NAGGING ME.

LIVE ALONE IN A CONDO THAT HAS BEEN DEVALUED AND HAVE CAREGIVERS 3 MORNINGS A WEEK FOR SHOWERS AND CLEANING AND LAUNDRY. HAVE TO HAVE HELP EVERY NITE FOR AN HOUR TO GET READY AND INTO BED. SPENT $13,000. LAST YEAR ON CAREGIVERS. FOUND OUT WHEN I JUST DID MY TAXES.

KNOW I WILL HAVE TO LIVE IN ASSISTED LIVING SOON BUT WANT TO PUT IT OFF CAUSE DON'T KNOW IF I HAVE ENOUGH MONEY. CARE FACILITIES AROUND HERE COST MORE THAN $3000.00 A MONTH. I DO GET MEALS ON WHEELS THAT I CAN PAY FOR CAUSE CANT COOK.

MY RIGHT SIDE IS PRETTY MUCH DEAD. NUMB AND SWOLEN AND WRITING HAND DOESN'T WORK. USE MY COMPUTER MOUSE AND TYPE AND FORK AND SPOON LEFT HANDED BUT CAN'T WRITE, HOLD PHONE OR EVEN USE POWER CHAIR CONTROLS WITH RIGHT HAND. LET MY HAIR GO GREY AND CUT SHORT CAUSE CAN'T USE A HAIR BRUSH OR CURLING IRON. MY PEE PROBLEM IS NOT BEING ABLE TO EMPTY MY BLADDER SO HAVE BEEN USING A CATHETER FOR ABOUT 5 YEARS.

AM STARTING TO GAIN WEIGHT - 10 LBS IN A YEAR - BUT DON'T WANT AND CAN'T AFFORD NEW CLOTHES. DON'T REALLY GO ANYWHERE EXCEPT DOCS CAUSE HAVE TO HIRE DRIVERS. TRIED THE RED CROSS WHEEL CHAIR VAN BUT FOR ONE WHOLE YEAR THEY CANCELLED MY RIDE CAUSE THEY DIDNT HAVE DRIVERS. I STILL HAVE MY LIFT VAN EVEN THO I CANT DRIVE CAUSE MY HIRED DRIVERS USE MY CAR.

BLAH BLAH BLAH. CAN STILL TALK ON THE PHONE. MY DAUGHTER CALLS SOME TIMES, ASK ME HOW I AM, BUT DOESN'T WANT TO HEAR ABOUT MY MS. GO FIGURE.

HAND TIRED. GOT TO QUIT.

[anneth121]

Sorry

Nipped this post right at the bud. Was a good rant day and I ranted. I just get tired of "keep smiling" and "one day at a time" and "I will wear purple". MS sucks and it sucks more as you age. My problem is money.
Nuff said. Sorry

[Seasha]

Nipped this post right at the bud. Was a good rant day and I ranted. I just get tired of "keep smiling" and "one day at a time" and "I will wear purple". MS sucks and it sucks more as you age. My problem is money.
Nuff said. Sorry

Please never, never apologize here at MS World, OK? You have a lot going on and have every right to rant!! Everyone with MS is entitled to rant when they want!! It's feels good getting stuff out!

I missed reading your previous post and I'm sorry you have a difficult situation going on and lots of stress. If my husband did what's yours did, I'd be going off the deep end! I hope you worked things out with your lawyer and took that insensitive ex of yours to the cleaners!!

About your finances - are you getting any other financial assistance besides Social Security? If you go to http://www.nationalmssociety.org/cha...ces/index.aspx it is the home page for Oregon's chapter of the National MS Society. Snoop around and you'll see some links for getting assistance... If it were me, I'd try and take full advantage of what they have to offer. If it's easier, give them a call. That's what they're there for. Maybe you've explored this already, but if not, check it out! I have an acquaintance with PPMS in WA. who has benefited from services.

In the meantime, come here as much as you can and let us know how you are - rant and wail and scream....we don't care. We'll even join you!

And please be well

[chalknpens]

Anneth

Yes, I agree that ranting is important. So is quiet whispering, which is more my style. I just got "spoken to" by two others in the Q&A Board who have real symptoms of MS and are content with their present treatments.

My post was meant to speak with those of us who disagree with the diagnosis, for whatever reason. My reason is that I don't have the symptoms and relapses that others have, and so i stopped the treatment that was depressing me and making me feel and look like I had symptoms.

I no longer look and feel like that, and believe my decision to stop treating and pretending to agree with the diagnosis could be shared here. I could not continue to live what feels to me to be a lie.

I think, now that I've stepped up, stopped agreeing, and admitted that in denial I have found my own way, I will go quietly away from the boards.

Although we seem to be at opposite ends of the spectrum, I do understand what you are saying, Anneth. And I am glad, Shashi, that you are here to support all that you do.

Wishing you both well.

Terry