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- เผยแพร่เมื่อ 1 ต.ค. 2024
- I have Primary Progressive Multiple Sclerorsis (PPMS) and this is part 2 of my story. Answering the question I get pretty often: "How are you doing?"
*Edit* My wife corrected me, it was 4 months ago when I was able to get through a 2 mile walk.
I was just diagnosed and your videos inspire me.
+Nancy Sorry to hear that Nancy! it's not an easy fight, nor is it one I would wish on anyone. weird thing is though, that fighting this disease seems to create better people. you will find some of the best natured folks out there have MS. maybe because it teaches us empathy for others and patience when dealing with ourselves. I have no idea, but it is noticeable to me having been in a few MS circles now.
I just want to thank you for the "leg ache" explanation, as this is exactly what I experience and it is hard to explain this to others.
+Ron or Wendy Benson It's really hard to explain isn't it? Mine never goes away anymore... can sap the joy out of life if I let it... I don't let it of course... although I do have the Mr. Grumpypants time haha. But trying to keep those rare.
Hey john,I understand this is an older video but I haven't heard from you in a long time and hope you're doing ok.
Hey man, I've declined more physically but still hanging in there, hope you are doing ok too.
My 20 yo daughter has ppms...we have her on a very good supplimentle diet and she has actually gotten incredably better over the last nine months. the doc said if she didnt go along with the injections that she could be in a wheel chair within a year...well nine months later she is doing awesome. plz look into holistic healing...there is healing completely. her numbess has gone, her itchiness has gone, her headaches and cramps have gone, she has gained 10 lbs, i can't even tell you how great shes doing. God bless you! oh and she had 20 legions on her brain. 9 months ago in her mri's
sara ancell Keep doing what works! I have changed my diet and stay away from chemicals in my food and in the products we put on our skin, like deodorant and after shave. I haven't regained any of my lost functions, but my decline has slowed down considerably in the last few months. I might have switched too late for my body to repair itself as I have spinal cord atrophy in a large section of my cord. Hopefully your daughter has caught it young enough for her body to rebound. I hope the best for you both!
What kind of injections?
Thank you john
I'm your spiritual family soon this will be over and we will run dance jump again!!!!
Good news. This video was very helpful
Thanks bother
Stef
Thank you my sister! I always tell our older brothers and sisters at the hall as we at leaving the meeting using our canes that we will race in the new system... they all think they are going to beat me!
John I have ppms diagnosed about 34 yrs ago. Mutual support?
I was diagnosed with RRMS February 2011. This is a loaded question and my general answer is fine how are you. it is rare for me to share because most folks ( except those close to me) generally just say it out of habit. I have been in a medication trial for a couple years and feel I am holding pretty steady.
+Janey Gomez Yeah Janey, when people ask me how I'm holding up now I usually say "I'm fighting... it is what it is and we are all fighting something" and then turn the conversation around to talk about what they have been up to or dealing with.
I just realized this was dated late 2014. I hope you are still this positive and upbeat now on 2019 John.
Positive and upbeat might be strong words... but I still have hope and joy and that gets me through the down times.
@@johng.8626 I get it, you explain it well
Are you still fighting the good fight? Xoxo's
Dr. Terry Wahls was dependent on a tilt-recline wheelchair for four
years until she reclaimed her health using a diet and lifestyle program
she designed specifically to -she now pedals her bike to work each day
1
John get a scooter or wheelchair right now. The off chance of falling down and getting hurt is of greater than what people think. When you get it there is just not many that can keep up with you in a chair 20 miles at 6mph I have yet see anyone. Your legs will thank you. As a long time +15 year PPMS endure/survive John hang in there!
+jon scheffing My mom actually gave me her scooter because she doesn't use it anymore, and I'll use that if I need to take the dogs on walks. Going to need to build my arms up to make it 20 miles at mph in a chair!
very good videos
I lost my Nana and my Aunt to it. My mother in law had progressive Ms.
My mother has done research of why Ms is so abundant in Ohio.
I'm sure you get frustrated; it's part of it.
I wish you well and thank you for your videos
Thank you for watching. Sorry about your losses :( I wish you well also.
I live in Michigan, just 40 minutes from the Ohio State line, we don't get a lot of sunshine in our long winters and .ost of us have or had a very low Vitamin D level, when I finally got diagnosed in 2013, my D level was 12, very low, and there's a genetic link in my family, 1 cousin, who lost her battle with PPMS, back in the early 90's, she lived south of Columbus, Ohio, one nephew newly diagnosed, he lives 40 minutes east of Columbus, Ohio and one cousin in Kentucky, kind of newly diagnosed, it came at the worst time, they were expecting their first child, now he never talks about it, but I see it.
My dad was diagnosed when he was 24 with PPMS, he is now 58. His biggest prob now is swallowing probs, he had a feeding tube put in, but with monitoring he can still eat bc that's one of favorite things, food. He also has spasticity problems with tight muscles. My advice is trust your gut, we have been through drs that did more harm than good. Even though he is in pain and tired and frustrated he gets out a lot in his wheelchair with his hoyer lift.
He also uses an ice vest in the summer.
Brandy Garrett Hi Brandy, thanks for sharing. I'm sorry your father has this and you have to watch him go through it. Sometimes I think it's harder for our loved ones to watch than it is for us going through it. Food is also one of my favorite things! Got to enjoy life even when it's hard right! I've had to change my diet a lot and cut back how much I eat because I'm not very active anymore, but I still love me a good meal here and there. Best wishes for you and your father moving forward.
I always say relatively okay. I strive for the fight. I can just roll over and give up either.
Brother. Sorry guess I gotta get in the habit of looking before I post !! Brother
Hey man, check out dr Terry walls story and her diet for reversing S.P.M.S and also check out Noel Battens views on M.S if you havnt all ready, I have done a lot of research the last 2 years after I got diagnosed with RRMS , I have reversed my M.S through paleo diet and learning to relax with breathing exorcises etc, some symptoms are still there that come and go, but I have slowed the progression right down and feel great most of the time. Its 50% diet and 50% relaxing and eliminating stress. I know PPMS is different ,but I am certain that these things will help at least a bit
Ad Potta Oh yea ,and exorcise is important too, but obviously not over doing it, just what you can manage, maybey push to your limits sometimes if you can
Ad Potta I've done some of these things but I haven't bitten the bullet of the paleo diet. I have greatly reduced the amount of chemicals I come into contact with, either on my skin or by what I eat. I think improving your overall health is extremely important. I do need to go see a chiropractor more often, I have a really good one that also is huge on nerve interaction with muscles that I used to go to once or twice a year. I need to make them probably more often. Might call him up tomorrow. thanks for watching and for the input!
so nice to hear someone's perspective who knows exactly what I am going through. That leg fatigue I get it and it is tough to explain to someone if they have never had it.
I explain it by comparing it to lifting weights, you can only do a certain number of reps and that those last ones are so stinking hard until you can do it anymore. That's the way my legs feel when walking, every step is a rep and I only have a few of them in me before I can't do it anymore, and even those few are hard.
Although I haven't lifted weights that sounds about right. It is just amazing to me how tired the leg fatigue makes you that is the part that is hard to explain. It just takes your whole body out of the game.
Fairly new to your channel I'm learning a lot and I see me.... I share your outlooks as well... you have to always find the positive!!!
I found it intresting when you described the 2 kinds of fatigue, I've had both but the second im glued to my bed usually with paralyzing numbness. I have 2 Kinds of pain and would have described my Leg pain exactly like your 2nd fatigue. 12 hours after last dose pain sterts starts gnawing away at me by 36 hours without I want to cut of my legs sometimes arms... I have small fiber and B12 issues which may contribute to the pain levels.
I find pain management guided meditation can do amazing things and you learn how to make then numb threw relaxation. an hour with the youtube video and comfortable quiet and I feel more refreshed and it lasts longer, maybe if itworksfor, you could get an hour@ work for "lunch" to possibly allow you to extend your day? Try it... it's kinda cool LOL
Thanks Katie, A lot has changed since this video, but I had to stop working because it became impossible to even do a short shift. Been fighting this disease a lot by trying to live a healthy lifestyle but it still has taken a heavy toll on my body. Won't stop us from fighting it though and doing what we can to stall the progression that may be around the corner. Seems like it's a constant phase of learning to adjust but we can get through a lot with real hope. Wish you the best!
@@johng.8626 I too am at the fight of I cant work. I still dont have my Medical diagnosis officially. So social security and lawyers really dont want to look at me.... I have some official dx but was denied on them 4 years ago at judge level. Things are worse now of course, but I finally have a good primary, my daughter is assuming financial responcibility for life for the short term, and I'm working on establishing constant care..... I had the attitude of they dont believe me they dont help why go..... but my last push at work that SSI said I could do ended in the hospital after 20 pounds in 3 weeks was lost due to loosing my ability to swallow.... that was the newest progression to my MS. I'm still fighting the crippling fatigue, and my digestion is sucking every last drop of water out of my stools..... (yes TMI of an issue I hear no one really talk about- digestion and ms and its unpredictabilty) I'm also struggling with progressed issues with my cognition..... it was a lot worse 2 months ago. My daughter was thinking early onset demensia with what she was seeing..... but accepting these changes is hard.
I am sorry that life has progressed to this point for you.... everyone said I was done working, so I'm creating a company from the confines of my bed!!!! My long term goal. Higher a personal assistant that does 'me' for me. Time for a drink run and grab it, then help me channel my thoughts..... type for me create the documents I need for me but with me!!!!! Then remind me to take my meds lololol...... where life gives lemons make lemonade!!!!! I will look forward to an update post even if I'm months behind seeing it
@@katiedangelo404 Keep up the great attitude!
Thank you for sharing your story.