Both parents with MS

[Dogmom8890]

I am trying to see if anyone out there may be going through the same as me. Both of my parents have ms and of course as time has gone on they both have gotten worse I do my best to help and do everything I can but it dose get really hard sometimes and I was just seeing is anyone had some advice or could share some insight on how they get threw it.

[AquaZumbaFan]

My heart goes out to you Dogmom8890. My situation is not the same but there is kind of a similarity My mother got diagnosed with MS when I was 10 (she had had symptoms long before I was born.) My dad was diagnosed with two brain tumors when I was about 4.5 years old. He had to retire from the railroad the army… Move us all across the country to be closer to my mom‘s family.. my dad got treatment when I was turning 6.. ironically he was able to reinvent himself after the radiation treatment for his brain and was able to keep supporting all of us. I remember as a little girl I would help my mom clip her toenails and polish them… I would help style her hair when she was about 60 she decided she was going to get her ears pierced, cause she had always wanted to… I helped her care for her ears and change her earrings etc. I helped my dad do things with his business even at a pretty young age.. my mom quit driving when I turned 16 and I took her where she needed to go for years and years.. ironically I got diagnosed with MS when I was 38.. I look forward to hearing about your story… You are in a safe place

[Dogmom8890 in reply to AquaZumbaFan]

thank you AquaZumbaFan I have definitely felt alone I know what my parents are going threw is much harder then what I have to go threw.

My dad was diagnosed when I was around 8 after my parents divorced, so I really did not understand much about it and he also was not that bad so you did not really know anything was wrong. As time went on his symptoms worsened and we learned how to mix his medication and give it to him their was brief times that he worked but then he would get bad so he had to stop working he would go blind and use the use of his legs he eventually developed seizures and a tick and the last 5 or so years he has episode to where he goes in the past he dose not know who I am and anything in the present but remember everything and talked like he is in the past for before I was born or when I was a small child’s. I also feel like the ms has changed mentally who he is I don’t know how to explain it. He has not driven in a long time so I take him everywhere he needs to go and anything he needs help with.

My mom was diagnosed when I was a teenager and for a wile she just had a problem walking requiring a cane to help her walk she is on her second relapse but this one is so different then I have ever had to deal with and is the one hurting the most. She can’t stop moving can’t make eye contact can’t speak a coherent sentence I have to bath and feed and take her to the bathroom walk her around the house or in a wheelchair when we must go out. It is hard seeing her like this. I’m fighting between DR and inc for them to hurry up and approve/send her treatment.

In the back of my head I am always worried that I am looking into my future I have had my own scare where my immune system attacked my body and told them to check me for MS but they wouldn’t

[AquaZumbaFan in reply to Dogmom8890]

Oh my goodness… what an amazing job you are doing with your parents! It’s kind of crazy.. we just literally do /did what we have/had to do when you have to do it.. my parents separated when I was 23.. dad was doing well back then physically but after mom left him I’m sure he was clinically depressed with paranoid effects ( I recognize this now- unfortunately much too late to be able to have helped my dad) Dad even lived with my husband and then toddler son for about 9 months.. soon after I got pregnant with our daughter, Dad decided our house was going be way too noisy… Lol he was right, but he moved back into town to his own apartment. My daughter was about 15 months old when Dad had a major stroke on the left pons in his brain… luckily for him all of his paranoid thoughts were erased with the stroke .. eventually he was able to be moved to assisted living and I was his financial and medical power of attorney… So I was working, had two young kids, I was still driving my mother around quite a bit although at that point, she was living 55 and over complex that could give her a ride to the grocery store or Walmart so I didn’t have to do that every week. I would visit my dad at least every week and usually more than that… I took him to his many doctors appointments as he live for nine years after his stroke. When you look back on things, even when you are the most frustrated at the time either with circumstance or whatever.. you really never regret the fact that you did everything that you could for your parents. I Always kind of wondered if my kids were gonna turn out weird because I was diagnosed when they were little… Until just a few years ago, I could keep my symptoms hidden pretty well until I had to start using the cane… But I feel like my children are grown now but are two really kind compassionate human beings.. They always had to kinda do a little bit more for their mom to help.. kind of like I was always determined to be a mom that would get on the floor and play with the kids with what they were doing… But sometimes I’d stick my hand out when I was trying to get up and they would help pull me up off the floor.. really just balancing me a little bit.. let us know how things are going… never hesitate to use this for ideas, information, or you just need to vent… If I could’ve had something like this, when I was in the heat of taking care of my parents or even when I was newly diagnosed… I cannot tell you how much it would’ve helped me. make sure you try to keep taking care of yourself as well… it’s easy to ignore the fact that you might need to go to the dentist or really anything because you’re busy with your life as a caregiver

[Greentime in reply to Dogmom8890]

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[Greentime in reply to Dogmom8890]

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[CatsandCars in reply to Dogmom8890]

I just want to tell you, from the heart, that many factors go into who gets MS in addition to genes. Secondly, the treatments are so much better today. I was so grateful to have any treatment at all when I was diagnosed 23 years ago. But I am honestly envious of the choices the newly diagnosed have in terms of treatment today. Many of us have had MS a long time and never had access to these treatments, so our stories, and your parents', would most likely be very different from yours.

In terms of what you can do now to keep yourself healthy and perhaps help care for and advocate for your parents, I highly recommend Aaron Boster's videos on YouTube. He is an MS specialist who runs an MS clinic in Columbus, OH, and has a real gift for explaining things you can do to help manage MS, and may even help you avoid it, who knows? But self care and a healthy lifestyle never hurt anyone. Things like managing stress, not smoking, drinking a lot of water, eating a healthy diet and avoiding processed foods, and exercising are all important. I dare you to watch his videos and not feel more empowered!

I'm deeply impressed by what you're doing for your parents. I hope that you will post often so that we can help lighten your burden with support and sometimes just a good laugh. God bless you. ❤️

[whwiechm]

We have always wondered if my father had MS because of some of the symptoms he exhibited, but he was a drinker which could have been the cause for his gait instability, and he died in 1994 so now we will never know.

I feel sort of guilty when I need help for things that used to be simple, but my wife is always there for me. I don't like to think of what I would do without her, and your parents probably feel the same about you. Many cheers to you for being there for them

[Dogmom8890]

thank you everyone for sharing it’s nice to be able to talk to other people on what’s going on right now I’m still going back and forth with the dr and pharmacy about her medication to do it at home they are taking forever to get it to us idk how long is to long to weight for her to get treatment dose anyone have advice?

[CatsandCars in reply to Dogmom8890]

Unfortunately, it can take a while (way too long!) for insurance to approve a medication. It stinks, but it's common. Especially with expensive MS drugs. All you can do is call to check the progress to make sure things are in motion. Sorry you're dealing with that. I know it's super stressful and frustrating!

[stepsforNeeC]

Dear friend, I cared for both of my parents before they transitioned; extremely hard and emotional! Don’t be afraid to seek help from resources in your State that may be available to you. Even if it’s a few hours of skilled care coming in to give you a moment. I’m an only child, so siblings wasn’t an option! This is also a good time to check your “true friends “ base. I’ll be praying 🙏 for you and your family. Reach out to the National MS Society for resources. Blessings and Peace NeeC

[Tazmanian]

I was diagnosed with MS in 2008 neither of my parents or anyone else in my family was ever diagnosed with it sorry for your diagnosis