[e-mail].

[piccolo0921]

hello I'm newley diagnosed with primary progressive I'm 62,iwas a chicken with out a head or squid.never sat down loved helping me and my 4 daughters. just would like to speak or help who ever I can. in this year alone fell at least 15 times thank god I did not break a bone yet. bonedensity said I have bones of a 90 yr old I was never a sitter, loved cleaning,cooking,painting,you name it I loved it. I live in a 3500 sq foot house which was done over since sandy.im very beside myself helping to accept ppms.this is the Halloween disease u never no what costume u will wake up in!!!!!

[WAshingtongirl]

Shall I call you Debra or piccolo? You've found a good place here. I'm sort of shocked that you were just diagnosed at 62 with PPMS. Is that a rarity? Your number of recent falls are concerning. I hope you don't live alone and have some help as needed. Perhaps your daughters live close by. Is your home able to accommodate your needs? I hope so. Extending to you a warm welcome.

[CalfeeChick CommunityAmbassador]

Welcome to the group. We're all pretty good about listening and trying to be here for others.

So sorry to hear about those falls, can you use a cane or walker? I know it's mentally and physically tough to give up independence.. I'm feeling the loss very much. How old are your daughters? Maybe they can help you some.

I'm Lynn, was just diagnosed in August, I guess I should say tentative diagnosis because my second neuro says he wouldn't of used just the first brain mri to make positive diagnosis. I was referred to UCSF for more definitive tests, etc. LOTS of them. see you on here soon, Lynn

[jimeka]

Hi Debra, I too have PPMS, aged 60, 2 sons, 1 daughter, dx at age 54, but I have RLS so I take medication for that instead of the ms. Like you I fall all the time, but thank God also like you not broken anything. Also like you I was a doer, never sitting, couldn't because of the RLS, now it's a different ball game. On here you will find that we are good listeners, we all understand, we are all the same, in that we suffer with ms,but yet we are all different. I won't lie to you it's a cruel disease but you must never give up. You have to keep your mind busy, just an idea, but I have taken up latch hooking and I make cushions for anyone who wants them, I don't charge, I do portraits from photos. This has helped me keep my self worth, I am still trying to bring joy into other people's lives, and it helps me. Keeps me busy and I must add that again thank God, I had to have a hysterectomy 3 years ago and now I can sit, I had a growth the size of my hand that was causing pressure on my spine. Any ways the old saying, " where there is a will, there is a way" don't loose your will, try and find something to smile about, even if it's only you doing something you think is stupid, which we have found on here we do a lot, keep a diary of what's made you smile, then you have something to read on not so good days. Take care, a walker helps, gives you some security, and as CalfeeChick recommends a cane. Cheers Jimeka

[WAshingtongirl in reply to jimeka]

Well, I've sure learned a lot reading here. Jimeka, I didn't realize (or I did and didn't retain it 😐) that you were diagnosed PPMS just a few years ago. (I pray your back is better today.) I'm definitely way behind and need to reeducate myself, like I did 25 years ago when I was first going thru MS testing. I'm shocked at the number of you here diagnosed PPMS at a later age (I can say that because I'm 58😉), and those diagnosed with MS at such a young age. Some as children! My, I have it easy.

[jimeka in reply to WAshingtongirl]

Evening Tutu, no one has it easy with ms, it doesn't matter what type you have, its horrible. They reckon I had probably had my ms 20 years before I was dx. I reckon the RLS masked it, as they say they go hand in hand. Anyhow, we both have it, we're stuck with, for what reason, I do not know, but hopefully it never stops us having a smile and a laugh. If God gave someone a brain to make these computers then He can give someone one to find a cure for ms. Role on the day when he/she is born. Maybe we should research it ourselves and see what we all have in common. Anyway enjoy the rest of your evening, Jimeka x

[WAshingtongirl in reply to jimeka]

Amen to all you said, Jimeka. You have a way with words. I do hope you get a restful sleep and awaken with less pain tomorrow.

[Hidden]

Piccolo0291, I'm MSFIGHTER and I am so glad you have found our chat room. The support you will find here is amazing. It is a safe place to ask questions, you will find a lot of broad shoulders to cry on, and we are good listeners. Believe it or not for the most part we understand where you are at and what you're going through because we have been someplace similar feeling lost and alone and wondering why, why MS had to attack us. I too am prone to falling. Ms has decided that my cerebellum is a good place to mess with. My cerebellum's mass has shrunk 20 to 25% over the last several years. In the past year-and-a-half I met you I have taken fifteen or sixteen major Falls. Luckily, before Ms became the center of my universe, I too was extremely physically active running a horse farm, riding horses for extended trips whenever possible, and playing competitive sports. The bone density I created when I was in the best shape of my life in my early forties has kept me from breaking multiple bones over the last year and I/2. I hope my good luck continues. No strike that I hope our good luck continues.

Keep a cane handy and find yourself a walker when you're having a bad day. They help dramatically. During those super bad periods I even have a wheelchair to fall back on. It probably took me about 6 to 8 months to come to grips with my MS but after that the stubborn, mule headed part of me decided this disease was not going to beat me without me putting up one heck of a fight. So I suggest with your cane in one hand and your walker always handy, you go about living. Do the things you enjoyed before MS hit as long as they are not putting you in peril. Get yourself a pet to have companionship, take it for walk, set out in the sun a bit when it's not extremely hot, read a book, volunteer time, just get busy. You can make your life is full as your heart desires. Sit down with pencil and paper and make a list of everything you enjoyed doing before MS. Now make a list of the activities on that list that you can accommodate so you can still do it with MS. I think you'll find a large overlap if you get creative.

Try not to look at your cup as if it's half empty. It doesn't matter what costume you wake up in as long as you wake up! You can find a way to deal with it. Besides, some costumes can be kind of fun! Don't give up living because MS has knocked at your door. You just have to find ways to slam the door right back in MS'S face before he gets in. We can't give up faith that the next new therapy will be the one that cures our MS. I would like to invite you to become one of our newest Ms Warriors. We never give up and we never give in, as MS warriors we just fight on! Together we are stronger. And I would like you to stay in touch so we know how you're getting along. Remember we're always just a post away if you need us!

[erash]

I really wish there were something other than a like, thumbs up, icon to show support. Here to listen, offer support and (on my up days--days when I'm wearing the Glinda Good Witch mask) help cheer us all on. I miss myself too. But I'm opening doors and looking and sometimes finding the me buried in time. I wish only good Halloween costumes in your closet 😊

[greaterexp]

You've already had some wonderful welcomes from some truly lovely people, but I'll add my own. Erase said it so well. "I miss myself."

I'm newly diagnosed, or at least that is my preliminary diagnosis. I just turned 57, and like you, used to work at a furious pace and loved it. MS forces, or to put it nicely, gives us the opportunity to redo our lives and find a new purpose. It's a daily challenge, but I pray you find your new life with MS still rewarding.

Be careful to protect yourself against falling! You sure don't need more challenges to deal with like a fracture!

Welcome to a very helpful and encouraging group!

[Jesmcd2 CommunityAmbassador]

Nicely said piccolo0921 and welcome to our chat and the wonderful world of MS. More importantly you found us If you ck out some of the past posts you will see we talk about pretty much anything and everything here.

But most importantly we give each other support

[Jbahnan]

Hello, I'm 36 and was dx with PPMS 7 years ago, it's a challenge. Neurologist put me on AMPYRA it really helps me, GOOD LUCK in the future!

[Jesmcd2 CommunityAmbassador in reply to Jbahnan]

Hi Jbahnan it is a challenge at that isn't it. Ugh Seems like everyday you wake up and an wonder "ok, what's today going to be like" Hope today is a Good Day for You!

[Jbahnan in reply to Jesmcd2]

I understand, it's tough gotta think positive, Good luck in the future!

[kat0615]

My name is Kathryn. I was diagnosed at 47 but I know I had MS as a child.

My last fall was 10/10/2016. I ended up with a gash over my eye which took 5 stitches and my nose broke on both sides.I look like a monster. I fall often. I will try not to complain because someone out there has it worse than I do. sometimes it is hard to stay positive even though we are aware of the Power of Atitude.

So hang on because we can fight this bulley (MS) together.

Have an enlightened day.

Kathryn

[agate]

@piccolo0921, I wonder if your user name indicates that you've played the piccolo? I used to play the recorder --enjoy flute and piccolo music but haven't played those instruments.

Sometimes PPMS is diagnosed in people over 60 though it's less common. It's a shame you have this in your life.

Frequent falling is one way I knew something was going wrong with me (back in the late 1970s). Fractured bones are no fun at all--take it from someone who knows.

I hope you can prevent more falls. Has physical therapy been mentioned?

I've found I have to listen to my body pretty carefully and do the things I'm doing slowly. Speeding up is what makes me go all clumsy and even fall. Heat and fatigue and any kind of infection can do this to me as well. I have SPMS.

If you're trying to take care of your house on your own, without any help, you might want to think about ways of getting some help even if it means asking the MS organizations in your area for assistance.

[Hidden in reply to agate]

Agate, it's MSFIGHTER. Your reply touched upon issues that I haven't seen addressed before but that are vitally important to share with newbies. I hope anyone reading your reply understands the importance of going at your own pace. Don't worry about not keeping pace with people. If I hurry, bad things happen to me too.

Any time I get seriously ill, like the flu or anything that makes me run a fever, I literally loose my ability to walk. I collapse into a heap of jello.and finally fatigue makes my arms so heavy I can't pick them up and my feet drag so bad I fall extremely easily.

Thanks for bringing these points to the forefront in your replys. This is what makes this chat room so very special. When post are made and concerns or questions are asked there are typically so many replies from different perspectives that the information provided covers a lot of material. Hats off to you Agate for bringing this important information into the spot light.

[Fee09]

Lol....i love how you put that. My costume is different everyday. Welcome to the family ☺

[Grandma-Rita]

I was also in my early 60's when I was diagnosed with 2nd progressive. I was 54 when I was diagnosed with MS - thankful for the yeas without symptoms. Falling is always a problem so I now use a walker a lot - shopping I like carts to push. I work out 3 days a week at a gym. We just can't give up and no one can do it for us. Just hang in there.

[RobertCalifornia]

I was 61 when diagnosed with PPMS. Real shocker. I had to quit work and redefine my life. My new life consists of stretching, exercise, eating better and doctor visits. I rely on a cane and leg brace (AFO). For longer distances I use a rollator style walker. I even have an electric scooter that used to be my mother in laws. Find purpose and live life to the fullest given your (our) limitations

[bavery207]

Hello Debra, I was diagnosed with PPMS 17 mos. ago at age 65. I was already seeing a neurologist for another disorder (Essential Tremor) when dx. My neuro. has been wonderful with the tremor treatment, but MS was the "elephant in the room" so I asked to be referred to an MS clinic which he did. From there I was referred for physical therapy, which has helped me a lot, so PT, and an MS clinic are two suggestions I have. I too am struggling with using an assistive device and read the responses here with care. Also, are there any support groups near you? Sometimes talking face-to-face helps. Know you are not alone with your struggles, there are many of us out here to "catch" you when you fall.

[Lindy53061]

Debra you can see from responses this is a warm, empathetic and wise online support group. I do hope you will have more good than bad; this disease is difficult but it seems to leave many with patience and a desire to share information.