New to community

I'm new to this community; but not new to MS. I was diagnosed with MS in February 2004 & have PPMS; I was diagnosed while living in NY & MD was great; tried Rebif initially, (no help-he didn't think it would work, but tried it anyway). Then, he tried Tysaburi, but developed optic neuritis after 1st dose, tried pre-medicating with Benadryl, but developed severe shaking chills after 2nd dose & tried 1more time, then stopped it (received IV steroids monthly entire time). Then tried IV Novantrone for 3 doses, took 2 months off & then went back on it, but stopped after 2 more doses. Gait got worse & I went from cane for short distances & scooter for long distances, then walker for short distances& now I am in a motorized wheelchair in house & scooter outside of home. I can no longer stand. Husband works full time as school bus driver & comes home for break from 9:45 am to 12:45 & then home @ 4::30-5:15 depending on schedule. Insurance won't cover home care aide for few hours for 2-3 days/week to help with simple thins around house. I can't cook anymore & so meal prep is up to him when he gets home & he's exhausted (he also gets up @4am

21 Replies

  • Welcome letselia. I was diagnosed in 2007. I started out with RRMS but now have SPMS. Just started on Rituximan.

  • How do you like Rituximab? It is very similar to Ocrelizumab coming out next yr hopefully. Wondering if youve found it to be effective at halting disease activity for you

  • I just had my second infusion of Rituximan on Tuesday.

  • Letsela, hi it's Fancy1959 welcoming you to the family that makes up this chat room. My, but you have had a time of it between your body's allergic type of responses to MS Therapy drugs and the fire breathing monster I call MS. Be careful letting MS run amuck over your nervous system. There are constantly new therapies being developed. Talk to your neurologist about them. Your symptoms have obviously professed in a rather rapid pace. You said you were diagnosed in 2004 which puts you somewhere in your 12-15 year of your disease. I am in my 15-20 year of having MS and I use a cane regularly and a walker on bad days. I can cook, clean, and do laundry as long as I pace myself and spread the work out over a couple of days. I guess my primary wish or advice to pass along to you is to FIGHT back. Even if it cleaning a bit to start with and work your way up to cooking. Try using your crockpot. If you doñ’t have one borrow one from a family member or go by Good-Will and get one for 4 or 5 dollars. Then ask around for recipes or find one of my favorite cookbooks, Crockpots for Dummies! Be creative, ask questions here on this chat room, fight, fight, fight! Together we are stronger! I would like to invite you to become our newest MS Warrior and fight alongside us to beat the monster we call MS!

  • I wish I could fight, but I'm so tired & can't stand at all & my husband works full time & then has to do so much around the house. I feel like I can't do anything right & my back pain is debilitating & my leg spasms get so bad, as well as my bladder spasms & incontinence &(I'm on 3 different medications) & have had Botox twice & prior to that I had interstim wires placed that worked briefly & then caused irritation

  • Hi Letselia, I hear what your saying. When we are taking meds that are supposed to help us, exercising as best we can, eating a healthy diet and doing all the stuff they tell us to do to keep ourselves healthy and and we are still not doing good, it's not because we aren't trying our best. The truth is that so much of what this disease does to us is out of our control. Please try not to blame yourself(sometimes easier said than done) and treat yourself with as much kindness as you can. I hope this community can give you some strength and support.

  • letselia, it's Fancy1959. I hate to do this but perhaps it is time for some hard love from another person with MS who has also gone through the hard love stage herself, more than once in fact. Sometimes the hardest step to take is the first one. If you are not happy with your current situation it is up to you to take charge of #1. Your mind set, #2. Your medical treatment. No one knows how your body is responding to your treatment as well as you do. If your mind starts to roll over and play dead your body will follow. Life is worth living. You stated you were on three different types of medicines, you couldn't stand at all, you were tired all the time, you have incontinence of your bladder, have debilitating back pain and leg spams.

    To put a different light on your MS symptoms, I am currently on nine different medicines. I also have incontinence of the bladder. I actually have to carry a change of clothes or two with me and extra depends at all times but I don't let that stop me. One of the medicines I'm on that has helped my leg spasms dramatically is Baclofen. You might speak to your doctor about adding that to your medication list. I haven't felt well the last two days because I took my second bad fall in the last 2 weeks. This time I hit my head hard again. I'm certain I've got a minor concussion even though the doctor didn't look very hard at it yesterday when I went in. But guess what, I keep getting back up. It's tempting for me to not try sometimes but I refuse to let this beast win. For your weakness and your inability to walk have you ever done any Physical Therapy? If you haven't, get your neurologist to write a script for you to go to an MS certified physical therapist. Given time and the right attitude you with their help and guidance can achieve a lot of improvements in every part of your Mobility. I know I have. Why not give it a try? hat have you got to lose?

    We are always here if you need to vent or to talk about your concerns. I have spoke you from my heart because I have gone through much of what you are currently going through. That's why I always tell everyone that together we are stronger. When one person falters it's up to everyone else to rally around him/her and get them back in stride. If after you have tried everything you and everyone else can think of and you are still in a wheelchair then you make the most ofyour life and set your heart to have a full life from the perspective you are now in. Please keep us informed of what's going on with you. You are in my heart. I truly hope this hard love helped.

  • Welcome letselia so sry that your going thru all this. I so agree with Fancy1959 pacing yourself is the only way things get done here. My guy is off working the pipeline and won't be back till Nov sometime. He used to do all the cooking also. Now l have to, l am not a good cook. Lol

    There are alot of resources that might be able to help you or point you in the right direction MSAA, MSA, church and your local support group. Hang in there :) We are all on this roller coaster ride together :)

  • Welcome to the group, letselia.

    I can understand your frustration. I am in a similar situation - using a powerchair, hubby gone all day. There are some things I am unable to manage around the house (vacuuming, for instance. I don't know which runs down faster, me or the battery for my chair when I try to vacuum). I manage to do a lot of things anyway. I generally do most of the cooking and easy cleaning, as well as the household business. If you are interested in some tips etc for managing from a wheelchair, I'd be happy to share.

    Again, welcome. We're here for you.


  • I would love some tips

  • Good afternoon, letselia

    I’d like to share a couple of my tips for doing housework and kitchen work from my wheelchair.

    Some of my best tools are STUFF ON STICKS. I have a stick with a magnet on it, one with a hook, one with a mirror, and one with a loop. I also have a lobster claw type grabber. I keep these tools handy on the hutch in the kitchen so I can get a hold of them easily. And my favorite tool is a pair of long tongs with rubber on the ends. I bought mine at IKEA but I think you could probably take barbecue tongs and wrap rubber bands around the end of them to achieve the same effect. These are amazing for reaching knobs on the back of my stole or grabbing something that’s just barely out of my reach.

    I do most of my meal preparation on the kitchen table. I have a kitchen cart where I store my small appliances as well is some bowls and other kitchen tools. I can move this cart over to the pantry and load things on it to take over to my table. I lay newspaper across the table before I actually start working. That way, when I am done, I can fold everything up and put it in the trash.

    Most food preparation takes me twice as long as I think it should. It’s frustrating but I try to plan for that.

    I have a toaster oven on the counter as well as a microwave. I utilize the toaster oven a lot more often than I do the big oven. It’s energy-saving as well as easier to manage. I also have a small crockpot and a large one. I usually set them up on one end of the kitchen table when I use them. It puts them at a more friendly height for me.

    I keep most of the seasonings and small tools that I use for cooking on the counter or on my cart. I use wooden spoons with longer handles to stir my pots with. I try to use as many light weight and containers as possible.

    I use my mirror on a stick to see what'a going on inside the pan on the stove. ;)

    I lay a large cutting board across an open drawer beside my stole to provide me with a lower surface that I can set a pan on if needed.

    Most pasta, except spaghetti, can be cooked in the same manner as Rice. The proportions are about three fourths of a cup of water to a cup of pasta. Bring the water to a boil, add the pasta, turn down the heat and cover the pot. It takes about five minutes to cook the pasta. I usually use a little bit more water just to be on the safe side. Cooked this way, I don’t have to worry about moving a pan full of boiling water.

    I make baked potatoes by wrapping individual potatoes in plastic wrap and putting them in the microwave for about seven minutes.

    I actually cook a full meal three times a week. I plan for leftovers and my husband likes to grill so he often plans and prepares one meal each week. I also keep the ingredients for a couple of super easy meals for those days when I am not feeling well and all I have to do is open a couple of cans and pour them in the pan. I have also given up on preparing complicated dishes. If it requires a lot of steps, or ingredients, I don’t fool with it. Getting frustrated or tired is not beneficial.

    I don’t ascribe to House Beautiful. My house is clean enough to be healthy and messy enough to be happy. I dust anything I can reach and I have a duster on a stick to get a little higher. Anything else I have to rely on my husband to handle. I use a Swiffer sweeper to clean the tile in the kitchen and the bathroom. I also have a whisk broom on a longer handle and a small dustpan on a handle to get what the sweeper doesn’t pick up. You could probably find a nice child size broom and dust pan also.

    I use an all-purpose spray cleaner to clean counters. I just move things from one side to the other and clean under them and then put the back.

    I have a front loading washer and dryer, thank goodness; otherwise, I’m not sure I’d do the laundry. It sure wouldn’t be safe. I collect a load of laundry in a pop-up hamper drag it into the laundry room where I loaded into the washing machine. When it’s done I loaded back into the hamper and then move over to the dryer. When the laundry is dry, I carry it back to the bedroom and fold it while I watch my TV shows. Because of the arrangement of my laundry room, doing the laundry is more time-consuming than I would like but I can manage it.

    While I cannot vacuum the carpet, I can’t vacuum the furniture with one of the long attachments. My husband handles most of the vacuuming though. He also changes the bed linens.

    I hope some of these ideas are useful for you. If you have a specific problem or task that you need help figuring out, please don’t hesitate to ask. These are the kind of “puzzles” I enjoy and I like to help people out if I can.


  • Wow, You've shared some great info. Thank you!

  • I really appreciate your tips,they are very helpful. Laundry isfn't a problem for me, I also have a front loading washer & dryer & they are in the hallway behind doors, right next to our bedroom. I put dirty laundry in basket & push it w/my wc around the corner to washer & dryer. I also have a gripper stick, but I like the idea of the tongs & stick w/mirror. Where did you get that? Running to the br every 2 hrs is & a pain; I get all settled on the computer to do bills or whatever, plug heating pad in, put it behind my back (I live w/heating pad)& then I have to pee, take heating pad out & wheel to br. Like you daid, it takes twice as long to do everything.

  • I made my sticks. I got a paint stirring stick and a small mirror in the cosmetics section at Wal-Mart. Superglued the mirror to the stick.

    I spend most of the winter wrapped up in my electric "spa blanket". It's like a large (48 x 18 apx)soft heating pad, but sometimes I find I get too warm, and then I have trouble transferring to and from my w/c.

    I wish could push the laundry. My laundry room is long and narrow. I have to back in to get at the washer, and go in forward to get to the dryer. I have to carry each pop up hamper on my lap.

    It's probably not necessary to mention that I try not to do more than one big task a day. And I try to do it in the morning. ;)

  • My best time of day is afternoon & evening

  • Hi, Letselia and welcome. I also have PPMS (my take on some of the responses was this tidbit was overlooked ;}) and I hear what you're saying. I was dx'd 2/17/89 at 11:30 a.m. ~ yes, I remember the time because it was startling to hear. My symptom: couldn't raise my rt. knee as high as my left, and the five or so Dr.s I'd mentioned this fact to attributed it to arthritis of the hip, lower back impingement, possibly lyme disease, etc. It wasn't till my chiropractor saw me walk, swinging my rt. foot around because I had foot drop and didn't like catching the toe of my shoe on carpet and pitching forward, and he tried to "adjust" the problem away. He recommended a neurosurgeon who sent me for an MRI, which is how I was dx'd. My first neurologist told me it was PPMS, possible because I was 47 and had had a hysterectomy in 1984, which started my having spasticity in my legs. Around 2000 I tried copaxone (every day, subcue) then when that became an issue, Avonex - Wow Brain Fart! - I know it's intramuscular, not how often. Oh well, that was the end of my DMT (disease modifying therapy, in case you weren't sure). DMTs for PPMS are slowly coming down the pipeline, but I think I'm too old, etc. I'm also in a power chair, can't stand at all, sleep on my back and can't roll over because my feet are raised over a pillow under my calves (calfs?). Hard to believe I'd been an Executive Secretary to two attorneys! I've had MS for 32 years, feel good about it being PPMS, don't feel it's a monster because it's so much better than lupus or fibromyalgia, both of which are excrutiatingly painful, I hear. On the flip side, there are numerous DMT's that will stop or at least slow down exacerbations, and make life with RRMS easier to live with.

    I can tell my hands are getting tired - as well as your eyes, I'm sure! - because I'm inserting extra letters in words, so I'll close. A couple of quick questions: 1) where do you live? 2) approx. how old were you when dx'd? I'm originally from L.I.!


  • I now live in Yorktown, VA, but lived in Dutchess County, NY when I was Dxd w/MS & I was 56 when I was DXd. Lorraine

  • Hi, Lorraine! I asked your age because you were dx'd w/PPMS, which is typical after age 40 or so. I was 47 after symptoms for five years following a hysterectomy. My family moved from Westbury, L.I., to Calif. when I was 2 1/2, but Mom and I went back every summer. Used to be if you lived in certain areas (above a certain --- hate my brain!) MS was somewhat of a conclusion at dx. NY and CA are both in that range, but to my knowledge, no other members of my family have MS. Our weather here in Central CA is HOT in summer, which seems to begin in April with a couple of 90s, same in May, then triple digits of 101 on June 2nd, to 99 on Sept. 27th! Over 40 triples this summer. 75 today, but up to 90 this Sat. Yeah, obsessed with weather, but I think the heat this summer attributed to my core weakness, which really sucks! Can't deal with poor posture, especially sitting in a chair. At 5'2", used to weigh 98 most of my adult life, been in chair ten years and am up to 137 lbs. That sucks, too ! Really not dissatisfied with my life, just parts of it, right?

    Take care, Bea

  • To everyone who responded to Letselia wheel chair bound dilemma about not being able to do anything around the house, THANK-YOU! What a great Community we have become. To all of you who gave useable ideas that directly relatéd tof the post that I sent her are truly MS Warriors! Without your input and practical ideas gained from your actual wheelchair bound experiences about how you work from your chair, very little would have been accomplished. But now I hope Letisha, the post about cleaning and working from your wheelchair has given you some solid ideas and a place to start your journey from. To take your first step from. Remember to start with baby steps and build yourself up as your stamina allows you to do more and more around the house. Won't your husband be pleased if you can do even some minor things around the house to lighten his load. I'm so proud of everybody. Letselia please make a log to chronicle your journey and then share it with us! Please let me know how you fair! This just shows what I've been saying for weeks and weeks that together we are stronger! Fight on MS Warriors, fight on!

  • I am so happy w/all the helpful ideas & absolutely love this community!!! Thank all of you

  • This community makes my heart smile! 💖+😊=😆😄😀

You may also like...