What It’s Like Constantly Living with Primary Progressive MS

I too have PPMS but I tend to call it "MS Lite" as things could so much worse as shown in the above commentary.
The progressive worsening of balance and mobility causes many changes in my lifestyle but often that is due to certain mindset and can be compensated for with many aids at my disposal in my MS "garage".
I do agree with Debi about MS fatigue being so disruptive. It is the one thing that I find hardest to deal with due to its unpredictability. I can be having a nice dinner out with friends, being the life of the party on occasion, when I am suddenly hit by draining of energy and can barely keep my head off the table or keep from slumping in my chair! The only thing to do is to try and wait it out (sometimes 10 minutes can help, but usually longer). Does anyone have a good fatigue fighter to pass along?

Thank you... You did an excellent job of capturing the feeling and put it into words I have been feeling. Especially dealing with PPMS.

Great report!
Thank you so much!
I live in pain everyday & yes you are right about everything. Fog brain & all.
I have remitting/relapsing MS but what you described feels like it's primary progressive MS.
Thank you once again & i pray for a cure for all of us living with this hard disease.

Thank you, don't stop.

How and when were u diagnosed with PPMS?

I have PPMS was finally diagnosed after 10 years. I am writing a blog about my journey, and I actually wrote about my PPMS yesterday perhaps you would like to read it. I talk about PPMS and socialising.

https://livingdailywithmultiplesclerosis.blog/2018/04/02/socialising-is-a-pain-really/

I was diagnosed in 2005 with PPMS, it has been a slow and painful daily progression.
I can relate to everything you are saying other than the bit about hope for finding a cure.
They have no interest in finding a cure when they can get $66,000 from each of us EVERY YEAR for two infusion treatments to "slow the progression", even the doctors will tell you, as mine did, "you probably won't notice the reduction in the pace of the progression" and that "if it wasn't covered by insurance and had to pay out-of-pocket you'd be better off spending the 66K on a extended trip around the world"

Your writing about your PPMS is more like those with RRMS....seems as though your disease is very active not inactive/degeneration like many of us with PPMS encounter with very slow progression/no new active inflamation.

Yes, PPMS is tough to deal with. Diagnosed in 2011 it progressed rapidly to me being wheelchair bound by 2013. Went through the sleeping problems to where I would be watching TV, and before I knew it, the show was over. I would have what I called pass out periods to where I just passed out for 30 - 45 minutes. Only happened at night luckily, sitting in my chair. That was about 3-4 years ago and does not happen as often now. I get up @ 7a every morn and get really tired around 12:30 1p and lay in bed for about 2 1/2 hrs, sometimes sleeping.

I've been diagnosed with ppms since 2000 when I turned 30 and I consider myself lucky since I've been able to continue working full time and my biggest issues are the spastisitry and numbness and tingling I feel throughout my body. I now use a wheelchair to save my physical energy reservers (started about two years ago) and it alows me to be able to do more at work and at home. I understand what you are going through though, every morning I wake up and wonder "Am I going to make it through the day" but I do and I hope the next day will be another small victory, one more day this unwelcomed visitor doesn't take me down. Thanks for sharing with us Debi.

Don't know what pain free day is. Left drop foot really bad,spasms,balance off,just a small foot nudge and I'm gone over.Have no patients,moody, tempermental,short fuse.Plan walking venues home/work to do much as possible.

I was diagnosed in 1999 after years of being a runner, triathlete, etc. Now use walker and scooter. I was excited when Ocrevus was approved. Have had two infusions paid by insurance. Ended up in hospital on antibiotic IV for four days. Have not gotten back to "normal" - whatever that might be. Agree better off taking a vacation.

Hi to everyone living with PPMS.
Like Rick, it has been a slow journey, since I was diagnosed with the condition in 2005. I could never have imagined, in my wildest dreams, how
awlful is was going to be.
I feel like an onion, being slowly peeled away, at times. It makes me wonder were it’s all going to end!

I do try to stay positive. I have a good support network of friends and family where I live in London. I try to count my blessings but I miss my independence. Where I have to plan just about every aspect or my life.

Enough of the moaning about my MS. Just remember what professor Stephen Hawkins said “never give up”

My heart goes out to any and all diagnosed with MS; be it RR, SP, PP, or even a "clinically isolated" instance. We all live with this dark cloud hanging over our heads.

I was diagnosed in 1977, after several years of symptoms. It has cost me so much. I've temporarily lost my vision, had constant fatigue, so many unexplained falls. I have so many memory problems I tell everyone "my memory is so bad I can hide my own Easter Eggs"!

I was rediagnosed in 1999, had my first MRI and started on Avonex. I have steadily progressed over the years, my lesions on my last MRI even astonished my Psychiatrist! I have been in a power chair for the last seven years.

The point is that everyone has issues, whether it's MS or Cancer; it's not that we have them, it's whether we let them rule our lives, make our decisions for us.

I am now on Ocrevus, it actually seems to help. It won't make me nineteen again, but I'll take anything I can. I've cleaned up my diet, got what exercise I can, do everything I can to sharpen my brain; and get the most out of life I can.

These are wonderful articles, it's so good to hear from others how they deal with the same issues as I, how they adapt to the same challenges. But too often we dwell too much on our issues.

As I recently discussed with a person with terminal cancer, I told him my view on life is "laughing or crying the end result is exactly the same". Too much of "Poor, Poor, Pitiful Me" may be a salve for your conscious but it just saps the vigor out of what life you have.

"Get busy living or get busy dying" Stephen King

Thank you for this column! I was diagnosed in 2014. My first recognizable MS symptom was foot drop in May of 2013. My MS is aggressive and I can no longer walk so I have to use a mobility scooter. I rarely find articles I can relate to but your words spoke to me. I try to remain as positive as I can and I am grateful I wasn’t diagnosed with Parkinson’s, ALS, cancer etc. but sometimes it’s good for my soul to hear I’m not alone with these awful symptoms. I don’t know what a remittance feels like as my symptoms never go away they just get progressively worse. So many articles are written in the RRMS perspective and I can’t relate to them. I was uplifted reading your column because it wasn’t negative but simply honest. Thanks for sharing.

That’s great that your neurologist has put you on the drug, octrevus.
Unfortunately, here in the UK it hasn’t been passed by NICE for people with PPMS. I hope it helps you.

I try to live my life to the full. Painting and travel are my passions . Both challenging. I’m going on a cruise next month to Spain and France. Cruising for me is the best way to travel, now I’m disabled (hate that word) I also sold two paintings at Christmas!

Thank you Debi for your article, I identified with it.
I’m sure many of us do.

“Love and live your life to the full and make everyday count”
Carol Allen

Thanks Debi and Jeff. Your article "What it's like constantly living with PPMS" is so important. I have had symptoms since 2000, with finally a diagnosis in 2007. Having it for so many years, I still have trouble describing to people (in terms that they will understand) what it truly is like. People just don't seem to grasp what we tell them, unless they have been through it. That is why people like you two need to continue to tell us about your daily walk with MS. So that those with the disease can have a glimpse into just where they stand in the total realm of things and that those who don't have the disease will come to an understanding and empathy for those who do. It means so much to us who suffer (no matter how) that our symptoms are validated by friends, family, doctors, physical therapists, and other specialists that impact our lives.
Thanks Jeff for the quote at the end of your comment. I have been busy dealing with fatigue the last few days. I think it's now time for me to "get busy living" again.

When I started reading your article, my first thought was "wow, when did I write this?" After a couple of years dealing with local docs and getting nowhere, I went to Mayo in May of 2016, ending with a dx of PPMS. Still able to work, have a phenomenal support system - family, friends, co-workers, medical - and try to find that silver lining, but it gets more difficult as I can track the downward slide. Sorta surprised that I haven't had any of the big three (cry, scream or put a fist through a wall) in the last 2 years, and, just to keep things interesting, add in a little skin cancer, but have to admit, I get really good parking places. Thanks for your article!

Hi All and thanks for your comments. I was diagnosed with PPMS in 2007 and have had a steady decline. While I used to love to dance, I now need a cane or if I am going to be somewhere that I know I will need to be walking distances, I rent a scooter. I have a wonderful doctor who is willing to try whatever drugs she think MIGHT help. I had the initial 2 infusions of ocrevus as well as the six month follow-up infusion but I haven't seen any difference. I have been doing pilates twice a week for years to try to maintain as much movement as possible, I also have the brain drain at times that many of you wrote about. Where I used to speak in front of large audiences in the past, I now find myself trying to remember the simplest words. Sometimes I give the definition to the person I am talking to and they guess the word - I guess that's my newest game! I've learned to live with the almost constant fatigue as everyone else has spoken about. The most important thing we all have to do is remain positive and hope that in the near future either a cure or a medication will actually be found that will make a positive difference for all of us.

Thank you Debi....very real explanation of what MS is like....I had RRMS but now have SPMS....and everything you wrote about is also what I am going through.I think that one of the most frustrating things , is that a lot of the time we look so normal to others....they don't understand that our whole day....and often our every step ...takes all of our concentration and energy...I had a close friend ask me if I was '' trying my best'',or was I just ''being lazy ''because I have MS , and it is a good excuse for not doing things.I know that you all understand when I say that I ''push myself''to keep going.Also...about fatigue...I have found that an Anacin tablet [only on a really bad day] does help with fatigue.....I seem to ''rally around'' instead of feeling like I will fall asleep standing up.
Debi....keep writing...I really enjoy your thoughts....thanks

I'm exactly like you. I went from drop foot to cane to walker t wheelchair. I tried copaxone, tecfidera and ocrevus IV therapy drug. None worked out for me. I've had so many mri's. I told my neurologist I'm not getting any for awhile. I've had 15 in the last eight years. I had a spinal tap. I just keep saying to myself that someday in God's timing I will be healed. I try and eat right and exercise when I can. I try and be positive. I don't have any active leasions, that's why the ocrevus didn't work. I pray that it works for you ?. Blessings

Deb thanks for sharing your daily walk. As I read it I said to my wife, it’s like I wrote this. I too find myself plowing through the day, planning my every step, looking for walls to bounce off on and conserving what little energy I have in the tank.
I thank God daily for allowing me the time to have fun with my kids, get them marrried off and yes, walk my daughter done the aisle all before I progressed to PPMS. My journey started in 2001 and today I am a much different person.

Not that everyone’s like me, but I encourage each of you to be persistent. Persistent to get out of bed each morning, pain or not. Persistent to not let the disease tell you how it’s going to be but to carry on instead. Listen, my wife has to drag my butt in after 10 minutes of doing the simplest, petite, stupidest little chore but I tell her, please don’t remind me about what I shouldn’t be doing! MS reminds me about that for free.

Hello Debi

Thank you for bringing a little light on life with PPMS. It is, as you mentioned, relentless and never gives us a break.It is so hard for others to understand how PPMS impacts us every minute of everyday.

Your article should help those who know a MSer understand a bit of what we are faced with. I read a great compassion once on what we are faced with.

It stated a normal person has ten spoons of energy to last them all day. A MSer on the other hand has five spoons of energy to keep us energized all day.

Thank you again for shedding some light on what we deal with!

Debi,
You described PPMS well. You said what many have no clue about. A great medical history lesson. Thank you for being transparent. I stay positive, trust the Lord, pray for the researchers and doctors, and live each day without MS owning me. I am thankful for people like you. Thank you.
Judy

Another well-done article Debi!! Thought I was unique in planning even simple outings! I have a rollator but don’t use it everywhere - I can imagine it becoming necessary.
Keep on writing!

I was diagnosed in 2011 with SPMS. My experience of MS is much the same as those mentioned above. My wife has left me ostensibly because she has a right to be happy. We have a 23-year-old son who has autism. He and my 15-year-old daughter live with me. I have little family support Fortunately,I receive outside support through the National Disability Insurance Scheme for cleaning and home and garden maintenance as well as access to the community. It is perhaps a little ironic but I am grateful to have the responsibility of caring for my children as it gives me a purpose every day and a need to push through the fatigue, impaired balance, muscle spasm and leg weakness I invariably encounter.I am fortunate to have a power chair which enables me to get around the yard watering plants and so on.
I take it Biotin tablets (100g 3 x per day) and Baclofen for muscle spasm. The Baclofen greatly compounds my fatigue and so am discontinuing it's use. My Neurologist has recommended I commence Ocrevus. Like Debi I have some reservations about the risks and am not sure whether to follow his recommendation. I do not expect that the medication will necessarily improve my disabilities more that it may slow any future progression.
Interestingly, some weeks ago, I was tipped out of my power chair whilst watering the lawn. Whilst struggling to right myself,I was bitten by what I believe was an ant. The next day, my elbow had swollen considerably and amazingly, I was full of energy and able to walk quite freely and give assistance to my gardener for about three hours. My mood was also much improved.
On a previous occasion I was all so eaten by a bee on my middle toe of my left leg. The sting was dull due to the numbness I always have in my toes. Amazingly, I was able to raise my left leg with the after the bite.
It is hard to know whether you ant/bee sting caused a beneficial neurological effect. My Neurologist was little interested in my story.

I consider myself very lucky to "only" have relapsing/remitting MS, though symptom wise this is very familiar, just with the amplitude turned down. Is anyone having any luck with the new treatment that targets progressive MS? When I was diagnosed (in 1984) I knew it was trouble when my doctor went on and on about we have seen this, and we have seen that, but not one word about this what we can DO about it. It was 10 years before the first treatment for relapsing/remitting MS became available around 1990, and now in 2017, we have the first drug that TREATS progressive has become available. Yet never heard a neurologist use to word CURE. I wonder when Watson, the supercomputer that beat the world's best Jeopardy players will be asked to suggest what is the most promising avenue to search for a cure.

I have been taking Amantadine for fatigue. It has helped tremendously.

Hi Debi, you are a Godsend. I love reading your blog and the comments. You radiate encouragement and positivity, which able or disabled people should project in order to live a full and happy life. My husband has PPMS diagnosed in 2000 but we know he had it longer than that. The progression, luckily for us, was slow in the beginning. The last year and a half is really started to speed up and is breaking both of our hearts (we have been married 39 years). If there are any vets out there make sure they contact the VA since without them I would not be able to care for my husband at home. They have provided us with many tools so that we can still travel this journey called life together at home. God Bless you and your followers.

Hi Debi,

I’m curious what you know about Gadolinium Toxicity? Gadolinium-Based-Contrast Agents or GBCA’s are a heavy metal contrast used in millions upon millions of MRI scans every year. The MRI scans w/Gadolinium are used in MS patients sometimes 10+ times throughout the years and are now known to settle in the brains, bones and other organs of unsuspecting MS patients. I am trying to find out why the MS community is not making this information a prominent warning to all MS patients and their caregivers?
This heavy toxic metal is making MS patients even sicker yet the FDA so far has issued only a “black box” warning. That’s pretty ominous itself! I found the gadoliniumtoxicity.com website to be extremely informative and helpful and I hope you will write a story on MS News Today to inform your readers of what the GBCA’s are really doing to their bodies. Thanks in advance.

Hi Debi,

I was wondering about the name of your Naturopath and what lab she used?

I have PPMS since 2009 and am turning 61 now. Have been to 2 different nuro. Dr who specialize in MS before I found one I liked and was concerned about my pain and would listen to what was going on with me each time I went in. Plus I could call in if I needed. Yes I travel 150 miles 1 way but it is worth it. I have tried every med there is and they either did not work or I reacted to them. I cant even take steroids anymore now ! I was going to try Ocrevus but cant as you have to do an iv of asteroid or another drug I can not remember I tried , but my throat swelled up again , so the ocrevus is out also now. So my Dr is trying his best to keep my spasms down along with pain. AS my right side I have lost feeling ,left leg is about gone, have MS hug which feels I have a girdle on from my chest to my stomach. At times I think my ribs are going to be crushed. And I do sleep a lot also. There is days I cant get out of bed ifi have done too much the day before. And I use to love to sew and scrapbook everyday with my granddaughters . But now I am lucky if I do it once a week. As I have to look up how to do everything that I use to do that was easy with the embroidery machine, and in frustrates me now. Makes me feel like a total dummy. I have only my oldest daughter who can help me, but I wont ask as she has 2 little (1 and 3 year old )ones out of 4 . Plus she is fighting her own illness fibromyalgia and cronic pain. My so called husband he does nothing for me just says it is my own fault like how is it my fault ? And gripes when a bill comes in. So I have to try and clean when I am able. I just stick around because I need the ins. and a place to live. This how I am treated after being with him 40 years and raised 4 children. He wont even buy anything I need to get around now. My daughter who really could not afford it bought me a cane and takes me to the Dr appointments. And she can barely get around and is in the proses of getting disability. So those of you who have care givers treat them well. As my daughter does her best, gets mad when I wont call her when I need her to even do my laundry down stairs. Yes I will try and go down 1 out of 2 I always fall. You can say I am stubborn she has her family.

Debi, I'd saved this article for reading at some later point in time, and I've just now (closing in on two months since you posted it) read it, or perhaps I had done so earlier but forgotten about it, although I've not found any comments by me up above. Thank you for sharing all of these things you've done and for the energy you've spent to do it.

As for me, I've had primary progressive MS for nearly 9 years already, so I'm wondering at what point primary becomes secondary. A couple of good things that have come my way in the face of this MonSter are that I live in Denmark (where, in spite of its national language sounding like vomitous gobbeldegook, is a good place to have been diagnosed because of its national health system paying for the meds keeping me and others like me going) and that my fantastic Danish husband is the most helpful and wonderful man I could have ever hoped to meet (we'd been together for one year when I was diagnosed, and he's put up with an imperial amount of bullsh!t to keep me keeping on).

So, to wind this up, thank you again! And, if I have cog-fog, where is the frickin' lighthouse already? (Humor keeps me going.)

Diagnosed with PPMS 2 days ago. There is only one way to explain my emotions. TERRIFIED. NO IDEA WHAT TO EXPECT.

https://www.dailymail.co.uk/health/article-6429733/Teaching-body-fight-glandular-fever-reduce-MS-symptoms.html

Hope this link works, its about the epstein barr virus and glandular fever linking to MS.
I have PPMS since 2012, and yes I have to plan to pee lol. Sometimes I run over my toes with my walker, ouch. There is no getting up fast or running ever again, that has to be the most weird part of MS. I have started drawing again as I am time rich now. I most draw feelings in an abstract way to keep me occupied.

Your writing is excellent and certainly an encouragement to many. My husband of 47 years has PPMS. Your words were so familiar to me as I sit in pre-surgery waiting for my husband to have cervical fusions this morning. The prayers of family and friends are supporting me in Gods love and care. Thanks for your good words too. God is here. God is good.

I have severe PPMS.
The only relief i get is from CBD tincture.
Its expensuve but worth ot in my opinion.
Make sure you order from a company in Colorado where irs sanctioned and tested.

I have PPMS and do not have a place to live. Can anybody help me? I am toooo cold in Connecticut there has to be a place for an orphane (both parents gone, significant other gone) (spent 25 years as an auditor so no real friends) afraid of local shelters because feel like target with physical ailments. Women homes are for abused women, that too important for me to try n cross

My daughter was diagnosed in 1997. After the birth of her son in 2008, it progressed quite quickly. Within 2 years, her ability to walk began deteriorate quite rapidly, and currently she is pretty much wheel chair bound. With great difficulty she can walk short distances with a walker if necessary, but I fear that will soon go away as well. She has consistent incontinence, and movement of her arms and hands is difficult and limited. Everything is an effort for her. She has a walk-in shower, but it is still extremely difficult for her and takes over an hour for her to finish. She doesn't usually want to go anywhere because of the incontinence and the difficulty of getting in and out of a vehicle and in and out of the wheelchair. Plus fatigue is almost constant, and sleep is usually sporadic. As her mother, it is excruciatingly painful to see her suffer when I can't heal her for fix it. All I can do is try to help her feel better by massaging and lotioning her legs, helping with physical therapy, washing her hair, manicuring her nails and toenails, ....whatever I can do for her that she can't do for herself.

Hey everyone, sorry I'm a little late to the party but I'd like to add my experience to the thread.

I've been suffering a very slow decline on the right side of my body for 12 years now, and suddenly a few months ago I had a first ever relapse which effected my other side and I mostly recovered. However, during the relapse, it greatly accelerated my right side with no recovery at all. It was thought I had PPMS, but now my diagnosis is all up in the air. It's like SPMS but back to front.

I truly believe this disease can break the rules at any time, and there are probably more categories of the illness as I seem to have PPMS on one side and RRMS on the other! My PPMS doubled in severity in just a few days during my one relapse, after many years of only slow progression with no relapses. My walking and right arm is a little messed up but I'm still managing to function almost normally, with a physical job and 2 kids to care for. Limb fatigue and pain sets in but it's bearable for now.

I have my down days but it's definitely important to focus on living.

Dear PPMS community.
My husband was diagnosed with PPMS in 2009. He experienced all of the above symptoms, except the blurry vision. Bit-by-bit he went through all the stages of losing his mobility.
Each stage is difficult because it also means that you are losing yet another piece of your freedom. You all know what I am referring to as "freedom". This is almost everything that other people take for granted. Now in 2020, it will be 7 years since he has been in a wheelchair. The decision to give up walking is a huge step. You will only decide on a wheelchair for safety reasons. Once you are in that wheelchair... at first it feels like you have been given a new freedom. You are now safe from falling-all-the-time.
In the beginning, he was able to raise himself in-and-out of the motor vehicle, shower, toilet, bed, etc. It worked well for us. But, his deterioration never gave up. The past 3 years (2017 until now, 2020) was especially hard on our mental well-being. By "our" I mean, his, mine, and my 3 daughters. I will never realise the full extent of this mental damage.
I thought it would be wrong to be concerned about anything else than the well-being of my sick husband. My eldest daughter would never ever admit it, but I know that she is damaged because of this evil medical condition.
At this moment while I am writing this message I am very emotional. This year has been especially hard on my husband and me because I feel as if our marriage of 27 years is coming to an end.
The constant breaking and spilling of things are getting to me. I have to physically help him with everything. He is losing feeling in his hands. I don't even look forward to visiting our friends. I struggle to be his loving wife and at the same time help him with his personal grooming. I struggle to be my husband's lover and caregiver at the same time.
It grieves me when I force myself to be intimate with him because he cannot partake in something that used to be beautiful for us. This makes him mad at me. He accuses me of random reasons why I don't want to be intimate with him. I struggle to remember to beauty in our marriage. We never used to fight so much but lately, every day and hour is a fight. Stupid thighs will develop into a huge fight. I feel so guilty because I realise that I cannot give him the care deserves. I get so mad at him when he wants to discuss the future and the possibility of going to a place where he can be cared for. We are not supposed to give up like this.

I was diagnosed with PPMS on April 1st,2021 and I was fortunate that it was caught early do to an unrelated injury. That said, I am having the most difficuty with mood swings that skirt the edge of suicidal depression. I expect as physical symptoms worsen that will only become more difficult as lack of physical ability will add frustration and pain to the equation. I did receive a prescription for medication to manage my moods but my question, I guess, is as the condition moves around will my emotional state level off or am I looking at years of erratic, mood shifts and staggering depression? I don't mean to upset anyopne with my tone and I'm just trying to get a handle on the whole thing.

Debi,
RRMS’ers normally have an “attack” and gradually regain function. For us with PPMS, a new symptom can pop up suddenly or gradually. The point is once here, they refuse to go away. They are with you for life. I have almost the same set of symptoms except I’ve been blessed to not have any vision changes. A weird new thing happened last year. The entire left side of my head, including my ear is now in on fire from nerve pain. It started January 2021 and is still with me a year later. I think emotionally the hardest thing. Is not knowing when or what will happen next. I lean heavily on my Faith in Jesus so I was immediately drawn to the name of your blog!

This time last year, I was battling breast cancer, covid and sepsis. After a spinal tab to find out if the cancer had spread to my spine, I was diagnosed with PPMS. All chemotherapy and radiation were stopped because I was showing 'cognitive fall-out'. I had a bi-lateral mastectomy and since then my PPMS symptoms have progressed rapidly. I am sure the shock to my system in dealing with cancer, chemo, covid and sepsis all at once, sped up the progress of my PPMS. My neurologist says I have had it for about 18 years - so a lot of my falls, accidents, numbness, etc., are now making sense to me. I am having a lot of the symptoms that you wrote about Debi, but the one that causes the most pain is my grief, grief for the person I used to be and grief for a myriad of disabilities looming on my horizon. This is all still so new to me so forgive me for not being able to feel positive - I just cannot get my head around this. I am afraid and in shock. I am a mother, for heaven's sake. There is no cure, and I cannot take Ocrevus because my cancer is not showing remission.
Thank you all for listening. It is the first time I am showing my true feelings and it feels good. I am tired of hearing that: “you should be so grateful to be alive” or “you will get through this too.” - Rrrrrr
Thank you for the article Debi, each member of my family will be getting a copy.

Diagnosed in 2019 at Cleveland Clinic with PpMS after several years of tests etc. I have progressed downwards since to my current status. Now in a wheelchair with dementia and constant pain . Now in anger management with foot drop, bladder issues etc.

I am a 70 year old Texan with PPMS. I have scoliosis, spinal stenosis, arthritis in my hips, sleep apnea, and COPD, I keep my sense of humor going, that keeps me going. For years I thought I had become a klutz! I started becoming afraid of stairs. I tripped over an ottoman and broke my humerus which started the year of testing ending with the spinal tap. Ocrevus was not something I wanted to try. I broke my nose, had numerous black eyes from falling asleep in my chair. My absolutely wonderful neurologist prescribed Modafinil which helps with the fatigue. I am still lazy like I have been all my life!

I named my MS Uncle Sal, you don't like him but he is always around. My rollator is Ruby. I take Gabapentin for pain(Gaby). I have PT once a week. I spent a month in PT rehab, which became the greatest thing I have done for myself. I cook, clean and do laundry. I am slow and sometimes cuss worse than a sailor. I laugh a lot, because I can be a real doofus. I got a fortune cookie years ago that said "he who laughs at himself always has a something to laugh about" I often find myself singing the Monty Python song,"Always look at the bright side of life". I refuse to leave this world sad. I don't have time for pity, I have had a wonderful full life and I am not going to stop now.