Joe R

Joe R

My name is Joe I'm 49 and I've had MS since 1997. I've been on Rebif for the better part of 9 years I kinda think its all pioson don't see any help. The Dr diagnosed me with secondary progressive MS about 3 1/2 years ago but the Rebif is for RR MS. I ask the Dr he says to stay with it. I've been to Jefferson Hospital in Philadelphia, PA several times no help. I've been to Centrastate MS Center in Freehold, NJ that was a big waste of time this quack had me undress to my underwear take off my AFO for Drop Foot and walk are you kidding me never been back. Im retired from the NJSP due to this disease. I live by the Jersey Shore since 1993. I'm in a wheelchair when out of the house. I have a lot of pain but keep on going. I'm looking for someone to widen doors in the house so I can get around easier with the chair as I'm destroying the walls. It gets boring sitting home all day watching TV as I was non stop up till about 4 years ago when MS Has other ideas. Maybe I can meet people in my situation here.

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  • Hi Joe, sorry we have had to meet under such circumstances. I understand your frustrations as most of us on this forum do. We all have different types of ms, varying degrees of it, we have found that no two people are the same but we all share similar symptoms. Here I have found that I can vent, gain information, share activities and have a good laugh, on here everyone understands. No one judges you and no one will ever say those famous words ' you look well ' . I live in the uk, I was dx with PPMS 6.5 years ago, still trying to get my head around it, but life goes on. Anyway we have a Birthday club, if you want to let me know when it is, just message me, in the meantime, keep smiling, blessings Jimeka πŸ¦‹ 🌈

  • Thank you Jimeka,

    My Birthday is 9-7 I have been dealing with this for a long time and slowly this god forsaken disease is taking away everything I worked for over the past 30+ years. Im sorry if I sound depressing just venting. Thanks for the welcome...

  • Hi Joe, is that 9th July, I am from the uk and we do things alittle different, and feel free to vent anytime, πŸ¦‹ πŸ‘

  • 7 September

  • Thank you πŸ¦‹

  • Your welcome have a good day its 2:26 am here TTYS...

  • It's 6.28am, birds are singing, time to get up. Our clocks don't go forward until this weekend, so more daylight. πŸ¦‹

  • Russso hi and Welcome to the MSAA Community! Venting is always allowed here! We don't judge, we are all on the same roller coaster ride they call MS after all.

    Your retired State Trooper? Or did l get that all wrong.

    As far as you Ms Neurologists go. If your not happy with them, then maybe you need to change? I know it's hard to do, but it can make all the difference ☺

    The MSAA can help you find a good neuro for you,they can also help point you in the right direction for help with adjustment's to your home.

    mymsaa.org

    800 532-7667 ext 154

    Jes🌠

    ~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

  • Thank you Jes, No I was in Communications I wasn't a trooper but my job was just as important. I had to keep up with anywhere between 4 and 30ish troopers at a time. I could be very stressful but with the MS I was having a lot of cognitive issues not as quick remembering things as I would have liked I Let my Sgt. know and he thanked me and helped me retire. As far as the adjustments to my house it would be widening doors and entrances, Im destroying every opening and doorway in the house. I also have to make a roll in shower I dread getting in and out every day I, my shower has a 5-6" lip my left foot has the foot drop and I drag it in and out. I don't want to fall but its just a matter of time. The number and extension above is that yours?

    Thanks for the welcome,

    Joe R

  • Hi Russso ok l can talk to you then πŸ˜…πŸ˜… my dad an uncle are retired Troopers. And l have a step brother who is a cop.πŸ˜‘ I can't get away with anything πŸ˜…πŸ˜… or can l??😁

    The numbers and website are to MSAA, the wonderful people that run this site! They have the resources to help you, or can help you find them☺

    I volunteer here, with all with all of you wonderful people!πŸ’• How was your snow storm? Did you get hammered real bad?

    Jes🌠

  • Jes, I'm sure you know the answer that's up to the officer or toppers Discression and if there is any negative info I pass to them like if you have a lot of points accidents suspensions but drive safe and I'm sure you'll have no problems. Whee I'm at forecasted 12-18" we got a whopping 0" I love when the news is wrong. They always ask for Financial info while I'm comfortable paying for a $70,000.00 van they always say I make too much you pretty much have to be on the brink of being homeless to get assistance. I don't understand that but what can you do.

  • Lol Russso are you kidding me??? Get a tkt or points?? In my family?? You would find me buried somewhere πŸ˜… πŸ˜… Actually, you wouldn't. They know how to hide the bodies πŸ˜„πŸ˜„ But they taught me well😁

    One things do know about cops is they are family. So get them together and help you out. Sometimes asking is all you have to to do. But give MSAA a shout,if they can't help, they can point you in the right direction to someone that might.☺ There are alot of resources out there.

    Besides the MSAA there is

    NMSA nationalmssociety.org. 800-344-4867

    msfocus.org 888 673-6287

    Give them a shot. The only answer you have with out asking is no. So what do you have to loose?

    Jes🌠

  • I will call it would be great to be able to do this without another bill but thank you for the heads up. Your family that are troopers are they from. The NJSP?

  • NYST retired now. My brother isn't tho. But my dad keeps his foot in the door, so to speak, which can make my life very stressful πŸ˜„πŸ˜„

  • Keep it all legal and your golden people that get pulled over and get arrested or impounded are stupid if you know you have a problem i.e. Lapse inurence a warrant don't drive like a but hole and call attention to yourself

  • Lolol l can't drive anymore anyway so it's all good!

  • Why not?

  • Can't feel my feet ☺and the Dr didn't find it to amusing when l told him that the car would stop eventually anyway.😁 Did you make those calls?

    And don't forget we have the birthday club! So let jimeka know your birthday ☺

    Jes🌠

  • Well I had the same problem in 2015 I Took a class and had hand controls put in my van I used to have to pick up my leg with my hands and put it on the break when I was fatigued or tired I said this wasn't good so took about 2 months but it's a godsend...

  • I called it went to VM I'm waiting for a reply.

  • Hey Joe, welcome to the group!

    Check with your city government about any handicapped support (as in monetary support) or grants to help widen the doors. Ask if they know of any other organization that may help. We found that there was money to help modify a house for our handicapped daughter (she too is in a wheelchair).

    Hope you find what you need.

  • Hi Joe, I have had MS for 9 yrs now and it is a life changer I agree. I have been on 5 different MS meds but now I am on Tysabrai and it has given me energy helped with balance, I bet it would help with your foot drop . Ask your MD about it it looks like u need to change meds anyway or get another MD

  • Hey Jude,

    Is the Tysabrai any good what are the side effects other than the PML I tried Techfadera for 2 weeks that was horrible. I tried copaxone that didn't Hurd going in just felt like the needle was still in me after it was done I tried Aubagio it was great as far as side effects but it didn't really work so I keep falling back on Rebif Mind you the 1st 10 years I didn't take any meds from 97-2008 started Rebif in 2008. I think there all poison...

  • Hi, Joe! Welcome aboard! It's 2:40 Thursday morning and I don't think anything I would try to write would make any sense. So I will just say "welcome" and come back and talk with you another time. Take special care!!

  • Thank you I'm always up late...

  • Thank you for your story

  • Russso , hi, Joe. Welcome.

    I hear you on the need for wider doorways. Every last doorjamb in the house has dings and gouges from my wheelchair. So does the furniture, the walls, the appliances, and even some of the cabinets. But, at least I can get around.

    I also sympathize with you on being alone all day with just the tv for companionship. Hubby works in another town, about 20 minutes away and our neighborhood is pretty much a bedroom community. I read a lot, try to do some workouts to maintain what functionality i have, write some, and go to Toastmasters when I feel up to it.

    I've officially had MS for 10+ years but definitely had it much longer. And my neuro reclassified me as SPMS two years ago. I've been on gilenya for six years with no flare-ups, so she's keeping me there. Too bad it doesn't halt progression.

    Again, welcome, and hop in any time.

  • Thanks Eleyne yes the walls the SS oven and Refrigerator all have scratches as hard as I try to miss them. It is the shower that I do dread everyday can't lift my left leg iver the 5-6" lip to get in so I kinda drag my foot. Some days if I'm tired it gets hairy last thing I want to do is fall but the top of my left foot and toes scrape on the metal track for the doors it's very painful as if I don't have enough pain to deal with. Being home alone also drives me crazy considering since 1986 I was a volunteer Firefighter EMT and worked several jobs at once till 2015 when I retired. Thanks for the post I'll be around have a good day.

    Joe

  • Russso , regarding the shower. Before remodeled my shower, I had a bench to sit on and move my feet into the shower. Perhaps something like that would work for you. And get good grab bars.

    Are you able to get out of the house to go anywhere? I can go outside but I need driver to go places. πŸ˜•

  • Eleyne,

    Yes I can get out I have a handicapped van with a ramp and I drive from my chair. Its better than nothing I don't go anywhere if I'm not feeling good. As for the shower it is too small for a bench and I have 2 hand rails in there I just can't lift my left leg over the 5 1/2 - 6" height I drag it and out and if I'm tired I feel like my right leg will give out. I don't want to fall that would be bad.

  • Welcome, Russso. I hope you find this forum and the wonderful people here to be just what you need. I have had questions answered, been able to share my joys and struggles, and have made some lifelong friends here. I wish the same for you, Joe.

  • Thanks for the welcome Tutu hope to see you online.

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