PPMS Story 8 - Letting Go of the Old You

[@patrickallan4981]

Love is my engine keeping me going on and working on myself. And with love I mean loving your people around you but also loving yourself. I hope ur doing well and your still loving brother.

[@socallynn6735]

Hi John. Just let me reassure you of the good you are doing. I look forward to watching every video you post. You really do address the same issues I'm faced with too. I watch and rewatch some of them because it reminds me that I'm not alone out here. I know it's a struggle to keep up the positive attitude some days but you're doing a great job of analyzing what's happening. I can appreciate it because you always seem to answer some question that I've been pondering. For instance, I've read and read all I could find about our fatigue. Your explanation is the first time anything has made logical sense! Keep up the fight John! We need each other in this struggle. You have made an excellent forum for PPMS sufferers here. Just don't take so long with your next update! You have no idea how much this old lady was worrying about ya! LOL 😂God Bless You

[@johng.8626]

Awesome I was hoping to hear from you! Yeah the big question for me has always been: "Why am I so stinking tired all the time?" and this was the best answer I found out there. Makes sense in a way, but I still don't fully understand how those chemicals interact with our body and mind, but I don't think anyone understands but our creator. It's so complex my brain hurts trying to understand it. Our bodies are truly works of art, just full of imperfections right now. Thanks as always for sharing your thoughts and confirming that I am not alone in this.

[@jes587690]

I have been to a Doctor in Mexico a few times and within the first 5 minutes he had my blood projected onto the wall and it was very bad so I believe our blood is what makes us have severe fatigue because it can not work properly as designed. I also have been treated for long term Chronic Lyme infection and believe this also causes blood problems. Great video John.

[@Traceyi1000]

You are a very inspiring speaker. What is really hard is losing my career and being alone. Mortgage company is waiting for payment and I have done everything I can to help myself. I waited so long for someone to come and help me but nobody did. Finally realized I have to do this alone and I'm ok with that. For those who have a spouse or family helping I say Amen to that! Imagine doing it alone. Just yesterday I was in the hospital and I was so happy to be back home even if it's just me. I do what I can and let the rest go

[@johng.8626]

i'm sorry i missed this comment but you are an inspiration to me for braving this struggle alone. i hope you are able to stay strong and fight the urge to give into despair. sending virtual hugs!

[@Wildflowerincali]

Amen John. What an awesome encouraging video. Thank you. When (whatever this illness is) hit me the fatigue was unbearable. I could not do anything. I was still raising my 3 children. I remember not being able to go upstairs to the 2nd floor of our townhome. 2 steps and I was done. If I ended up getting up the stairs I literally could not move the rest of the day. It was at that point I turned to my bible and decided I would make the most of my bed ridden life and it was such a blessing. I had always believed in God but believing in him and knowing who he is are definitely two different things. I wouldn’t trade that time I had getting to know him for anything. I did have spurts of better health between then and now and at one point thought I had been healed only to get another invasive flair after another. One day we will be healed and what a glorious day that will be!!! That is what gives me hope! Reading Gods word and prayer has definitely taken priority in my life and I know that I know that I know that Father has a purpose for me regardless of my physical and cognitive weaknesses. Tomorrow I am meeting with a new neurologist and I’m hoping and praying this new doctor will be one whom is willing to take the time to listen and do the proper testing so we can figure this all out. If not then I am on to the next...today I had an appointment at social security because I am unable to work at this time. I’ve had the most debilitating migraines that just lay me out for days at a time on top of all the other issues I am having. I was also treated in the ER on my birthday last month...they did a ct scan because they thought I’d had a stroke. Ct was clear. I am having some pretty severe cognitive difficulties now but the bigger picture hasn’t changed. God is still in charge and his love for us is incomprehensible. God bless you John. I am keeping you and your family in my prayers. I am so grateful for your faith. Proverbs 27:17 Iron sharpeneth iron; so a man sharpeneth the countenance of his friend ✝️

[@johng.8626]

That was a beautiful comment and one I needed to read right now. Proverbs 27:17 indeed! Yeah I went through my whole faith search while in my late 20's and early 30's and found that the Bible is most definitely inspired of our creator and it is his written word to us. There is no other book that touches the heart, gives you understanding, builds up faith, and provides hope like the Bible. It is a gift and always has what we need to here. I believe the accounts where Jesus healed every sort of infirmity... imagine having him as our reigning king instead of the corrupt and inept rulers we have guiding this world. Revelation 21:1-4 is what God has in store for us as long as we keep our faith... The struggle is real in this world though because of so many forces working against us. (1 John 5:19) Keep building your faith and don't let this disease, the discouraging medical field, or anything else take it away. (1 Peter 5:6-11) In the end, it really is our only real hope. I hope you can find some relief in the meantime or at least the strength to deal with this battle every day. Much agape and prayers being sent your way!

[@Wildflowerincali]

John Gensamer Thank you!!!

[@10tricee]

Thank you John. Your message was just what I needed to hear.

[@johng.8626]

You are most welcome, hearing responses like yours is exactly what I need to hear too!

[@ronorwendybenson3751]

Hi John, nice to see you again! I found your video to be very encouraging. I have what I call "Job days", then I pray about it and get over it. Looking forward to our Regional Convention in a couple of weeks, I have a power chair that I will be taking on public transit from our hotel, so still need to do some practice driving! Gotta feed hubby - just got home from work - so will talk later! Take care!

[@johng.8626]

hey my sister! good to hear from you guys. we went to the Saturday this last weekend and will go to Friday and Sunday later in the month. better to go in order though because the video drama is a 3 part. i had to get the jist of what the 1st part was about from the brother next to me. lots of aches, pain, amd fatigue but totally worth ot!

[@4mymoney2]

Hi John I have had RRMS for 14 years and believe that I am now SPMS. I am now on disablilty due to Concentration and memory issues. I also deal with vision problems, speech issues, Fatiuge, bladder and bowl issues, numbness, burning, weakness in my legs, pain, and I have a limp. I also have spasms. I use to be active but could not run to save my life. I just started taking Tysabri since nothing else is working for me.

[@johng.8626]

I hope you find something that gives you some relief, if not physical, at least maybe emotional and spiritually. This disease is kind of soul crushing if we let it be, but it sure has taught me a lot and opened my eyes. Wish I had longer concentration times and more energy so I could do more, but we can only do what we can do. Keep up the fight Jessica!

[@Sam-Oznog]

Hi John! I messaged you before, I don't have PPMS, I have RRMS, but i have a rather large lesion on my cervical spine which caused symptoms to start almost 3 years ago, so I could've had MS since my mid 20's, but what can you do with the thing you cannot know or even consider a possibility? I've been quite upset having to quit my job at a daycare, so this video really spoke to me. Who do we become after being forced to change? Some people spiral down and some people rise up. At this point, we can only rely on the emotional strength we grow within ourselves and give to others. We're still alive. Please take care. "'Be bold and mighty forces will come to your aid."

[@johng.8626]

Ty Samantha, that was a beautiful reply. It's really weird, but you are right about the emotional strength we grow within ourselves. There are now people that actually rely on me, in a sense, to stay strong emotionally and spiritually to help them... I never thought I would be that kind of person. I really feel this disease (and God) has helped me grow stronger that way, and strong enough to be there for others. I still have moments of downtime, but they don't hang around long so I'm avoiding the endless cycle of despair that I see so many folks fall into. For now anyway, seems like it's only going to get harder to control that as time goes by and the body fails me even more. But I've turned back the clock a bit on my progression by going to a plant based diet and avoiding processed foods... that will be the focus of my next video.

[@Sam-Oznog]

Awesome! I look forward to that! I became vegan almost 2 years ago when i started having symptoms. I believe it has helped greatly with my MS as I haven't had a relapse that needed steroids nor have I had any new lesions thus far. Fingers crossed, though, I'm having a new MRI in January. Stay strong, this disease can't break us!

[@lauracameron2753]

Hi John, it's good to see you back. :) Have been wondering how you've been. It's great to see you maintaining your positive attitude - it definitely helps, doesn't it? There's a lot to be said for the old 'accept and adapt' outlook. Take care of yourself. :)

[@johng.8626]

Yeah i agree about acceptance and moving on. there are just some things we cannot control and it's going to take divine intervention for it to go better. might as well just adapt and keep going forward and do what you can. don't always feel positive that's for sure, but i am constantly fighting those negative thoughts. good to hear from you too!

[@lyndonbender]

You described my life almost exactly except I was diagnosed 8 years younger than you were I’m about to turn 28 but I’m positive I’m now at peace knowing what’s happening to me and not stressing not knowing so I’m just keen to make the most of it 😜

[@johng.8626]

Knowing what it is has helped me too. For many years I just thought I was just more tired than other people for some reason and not as motivated. Finding out there was a reason for the fatigue helped my mental state and self respect level for sure. I feel really bad for those who go through a much more difficult diagnosis process and still have no idea what is causing their problems.

[@daphnededrick8493]

I was diagnosed in 2013. Five days after my Grandma's funeral. I am now in a wheelchair. My husband works full time and takes care of me. Unfortunately I have optical Neuritis and have lost most of my vision. It's hard to type but I hold my phone close. Not seeing well is really hard. Listening to your blogs helps a lot. Please make one soon.

[@johng.8626]

Sorry for all your struggles Daphne, it was good to hear from you and thank you for watching. I'll try to make one soon, so much has changed within the last year, and I'm treating myself naturally... figured I'd give that a go and try it, and it really has helped in my case. No miracle, but I have actually seen some real improvement. I'll talk about what exactly I'm doing in my next video. Stay strong my sister, I know it isn't easy.

[@daphnededrick8493]

John Gensamer Thank you! Yes, I will stay strong. I am looking forward to hearing your next blog and what you have been doing to feel better. Thank you for your kind words also. Friends, Daphne.

[@SamahLama]

John Gensamer aww. You make me hopeful. You're such a genuine guy. I'm only 20, but you inspire me.

[@Traceyi1000]

Letting go of the old self is hard but knowing what and why it's happening is a relief. Please God 🙏 give us the strength and courage to do what we can .

[@cynthialewis2096]

Argh, this is my biggest problem! I have not been able to let go of what I was and what I used to be able to do. I hide my diagnosis, tell people my disability is due to a car wreck.. I hate being a liar, and never was before. I think I am getting to the point where i am ready to let go of the old me. I do not like the person that I have become, even more than I hate the ms.

[@2304rocky]

Hi John, I have had PPMS. You mentioned about your constipation and I found that Phillips Milk of Magnesia. This medicine has helped me go every day. The trick to taking this gooey is to mix it half and half with water. You can also take a sip of orange juice before you take the milk of magnesia. I have had PPMS since 2003. I have lots of tips that have helped me especially fatigue. Your friend Joyce

[@johng.8626]

Hi Joyce, so far I've been able to manage (mostly) the constipation with an improved diet, but if it gets unmanageable I will remember this comment. Any tips you have on fighting fatigue would be welcome. Thanks for watching and commenting, keep up the fight!

[@2304rocky]

HI JOHN, MY TIP ABOUT FATIGUE IS PART A DON'T WEAR YOURSELF DOWN TO A KNUB. IT TOOK ME A LONG TIME TO UNDERSTAND THIS. PART B TAKE A NAP IN THE AFTERNOON. NOT TOO LATE OR YOU WON'T BE ABLE TO FALL ASLEEP AT BEDTIME. i HAVE MY NAP AROUND 12:00 FOR 1 HOUR OR SO. i LOVE YOUR VIDEOS...JOYCE

[@johng.8626]

I'm having to learn self restraint when it comes to my energy, which is really stinking hard for me to do, but I am getting better at it... I think anyway haha. I agree on the naps, it's so important to rest the right way. I go into my bedroom and nap for usually an hour or more with as little noise as possible so I can get true rest.

[@barbaradepadua5470]

Staying positive is almost impossible for me. I have had PPMS for 8 years and am now bedridden. I have a seven year old daughter who barely recognises me anymore as I am now skeletal. I want to get euthanasia. Can barely move at all can't breathe properly, can't eat I am just a head and a pair of eyes. My entire body has shut down. I am glad you still have optimism but I am in the deepest darkest despair. I'm not the girl I used to be.........................................................................

[@johng.8626]

What you are going through already is my nightmare. It would test me more than anything else in this world, and I'm not sure I could keep my relative positivity up under such a test. Seriously, I truly believe someone could point a gun to my head and I would not lose my integrity, faith, or hope... but what you are forced to deal with... I worry about my resolve under those circumstances. I do believe though, the relationship I've come to with God, can actually get me through the worst nightmares, but only if I let it and keep it as strong as possible, which is what I'm trying to do in case my situation ends up like yours. I promise you there is light at the end of the tunnel. There is a hope for a life like the one that was originally intended for humans when we were created. Free of what you are going through and everlasting. This world, that is full of all this horrible suffering, is not what God purposed for humanity. Unfortunately humanity as a whole have collectively chosen a world where we decide our own rules and we follow our own messed up hearts even if that means causing suffering to others. In essence, we have used the gift of free will to rebel against the authority and guidance of our creator. Once this rebellion plays out though, and it is convincing enough to all creation to see what happens when we do not follow the creator's guidance, God promises to end the rebellion. Those wanting to live in God's world and willing to show that they are meek enough to follow his directions will inherit the Earth. The climax of the Bible is at Revelation 21:3,4 and that describes what will happen at this time. I encourage you to check it out, please, you have nothing to lose at this point by doing so. Feel free to message me hear or add me as a friend on Facebook if you want to talk more. My thoughts and heartfelt prayers are with you Barbara.

[@barbaradepadua5470]

Oh John I am so sorry for being so negative. It's hard to find any positives with this disease. I used to be an English language teacher and I used to love my job. I have a little seven year old girl . That's the hardest thing. Not to be the mother that I want to be to her. My life before this was full of light, love energy, music and happiness. Now all that is gone. I like you believe in God and I do talk with God and it does bring the only measure of comfort. I also follow the Terry Whalls diet strictly and that is a huge help. I don't take any meds cos lets face it there is nothing for us. I hope we will be friends. keep walking and excersising as much as you can . There is light at the end of this very black tunnel . I think the key is in no processed or dairy or gluten and keeping active. I know of some PPMS people who have reversed their MS through food so there is a way out of this quagmire . Keep in touch. Keep the faith xx

[@johng.8626]

No apology necessary. Yeah, I don't take any meds either. Kind of feel like they are false hope and drug companies are one of the biggest evils in this world. Thank you for the words of encouragement, especially when it comes to walking. You know how hard it is, because you were at this point, and sometimes it's so much easier for me to just sit and do nothing instead of constantly pushing myself to the limit. You are right though, if I keep pushing myself and eating correctly I might be able to delay the decline and strengthen other parts of my body enough to fight back some. That is worth it in the end. That seven year old little girl is lucky to have a mom that loves her as much as you do. Please do not feel guilty over what you cannot do, instead do what you can and leave the rest in God's very capable hands. He cares deeply about you and your little girl. When you teach her about him, there is nothing better or more valuable you can do for her and hopefully that will provide you with some meaningful purpose and accomplishment in your life. Lets both keep our eyes in that little bitty light at the end of this dark tunnel that seems so far off but it might not be as far as we think.

[@Witchlinblue]

If we can from our beds, email on our laptops or tablets to whoever you can think of to insist more of the charity money raised in your country for MS goes also to PPMS. Write to the phaarm Comp too, anythinng that can fund, raise money, do research, politicians of all levels etc. Especially you guys just startting on this journey, remember we can make a difference from home. Pressure friends and family to write too, they will feel better for it since they can't help us much.

[@Traceyi1000]

Just found out that I have first cousins on both sides of my family with MS. One is a male on my mom's side and a female on my dad's side. That's not a coincidence.

[@johng.8626]

There definitely seems to be some sort of genetic link with most people that have MS.

[@militantmalc6328]

Have you ever tried Bladderwrack and organic sea moss together .. The seaweeds detox and strengthen the nervous system. Also builds the body up.. plus eating a clean fruit raw akaline diet will help the nervous system.

[@garybroaddus1847]

How are you doing? my name is Gary I also have ppms I use a walker to get around.Iam 62

[@SamahLama]

Episode 9!

[@johng.8626]

Soon I promise!

[@scores718]

Ppms >35 yrs. John. While you're researching, look up "denial" "vanity"

[@daddytomandfriends]

Thank you again and I agree i don't see how anyone cant see the truth .

[@mimiwinter6615]

Hey, what is your attitude towards HSCT? Would you try it or rather wait for better treatment in the future?

[@johng.8626]

As long as it's from my own bone marrow I would be ok with it. However the price tag for that kind of treatment is really high and not available for me yet.

[@shawnmcanthony5724]

😮😢

[@shawnmcanthony5724]

At least you know the truth and you know Jehovah. Many persons believe they will go to heaven. Its a fact jehovahs new world here on earth like in the garden of eden will come soon. FACTS. I have ms too we all go through things remember isiah 30:15 your strength will be in remaining calm

[@CDMINDELO]

can you send your email?

[@Traceyi1000]

I believe he's on Facebook

[@EH_888]

Do some research on the Cowden Protocol. In a medical study, Lyme bacteroa was found in 100% of MS patients. Dr. Lee Cowden has KZbin videos. I hope this helps. Your MS is a symptom of Lyme and is not a disease within itself

[@anonymousgirl799]

Elizabeth Henry I was tested for Lyme, several test methods, and I dont have it. I have MS.

[@malleydelurey2543]

Elizabeth Henry, Please list study. There are conflicting studies.