My Diagnosis: Cerebral Palsy and Relations to Incontinence

[Brian]

@Incont

Since this is the form that we would discuss our symptoms and our diagnosis, I figured I would place something here so people know what I deal with. Please note that because we do not have very many members yet, I'm not going to hit the mentions for every person, but they will see the posting here when they enter the Forum, so I shouldn't have to worry about that. once we have a lot more members, then we can start using mentions to be able to allow them to see that in their notifications panel ~Brian~

I will say that I have many diagnosis, but that is because I have cerebral palsy, and there's a myriad of other things that can crop up because you are dealing with it. One of the things that I was dealing with in 2018 and 19 was having accidents all the time, or not being able to get to the bathroom fast enough in like summer of 2019, where I would feel it and I wouldn't be even able to get up to be able to respond, or I wouldn't even know that I was doing it until it was it was too late. When this started happening, I knew that I had to have some help, so that's when I started as a member of Daily Diapers, I knew that this is where I needed to be, because I needed to help and the support because I'm thinking to myself how is I going to handle it?

so my primary diagnosis is cerebral palsy, known as CP: it is a neurological condition and not a disease. CP can affect your muscles your bones your tendons and other parts of your body as well as your brain and other functions. there are there are many different types of CP, but each diagnosis of CP is different and unique to the person who has it, and it is caused due to something happening like maybe at birth when the cord gets wrapped around someone's neck, or there might be something that is caused in the womb And then you're born with CP I'm not sure exactly how that works, but there are many different types of CP, many different severities, and it is dependent on the individual who has it.

As such, I have many sub diagnosis that have been showing up showing up over the years. here in this form, we will be dealing with incontinence, and it's tied to CP. My primary diagnosis based on incontinence are:

"Cerebral Palsy"

" Continuous leakage of urine"

"Fecal and continents with fecal urgency"

I have also been diagnosed with diverticulitis and IBS. these conditions combined with CP can cause many problems. That I was continent for as long as I was from about the age of two until the age of 46. once I started having accidents and having problems where I did not have any idea what was going on and I'm able to respond fast enough, I knew that I was in need of help, so my first stop was daily diapers. I chose this site because the people on it are very knowledgeable and know how they deal with certain situation, how to deal with the conditions, how to deal with the semantics of having incontinence, making sure you have the right equipment and supplies, and the most important thing is the support of a loving community that doesn't judge based on the fact that someone is dealing with I made the choice in 2020 to go full time in diapers. This is because of all the Times that I would have accidents, Or when I didn't know what was gonna happen and when. as I started my journey, I went to the doctor and asked him for my help, got the diapers I needed, and I called my case management team to tell them that I needed some help, and to open the floodgates. I was surprised at how quickly I was able to get whatever I needed to make myself able to handle the physical aspects of dealing with incontinence the changing of the diapers making sure your clean making sure that you're not dealing with rashes and other problems, because as you're dealing with incontinence you have to make sure that your extra clean and other things that normally someone that just takes a shower for example would take for granted.

Once I went to the testing phase of every single cloth backed ridiculous diaper that they supposedly make, I was able to finally get the Megamax.  I basically had to tell Medicaid that I was dealing with severe incontinence both ways, and I asked for the diagnosis to be added, because I wasn't gonna deal with having accidents and not have a way to deal with it period Of course they wanted me to be tested, and all this, And I just basically said that I had CP already, and it is widely known CP do deal with incontinence issues depending on the situation, and I am dealing with such an issue, and I am the expert and so is the doctor, so they know what I need, so there's no need for me to go to urologist to be tested. once the doctor gave me the proper diagnosis and the paperwork to back it up, I was able to get the Mega Max's within 10 days, or at least they said 10 days and I think it was like 3. I think somebody kicked it up to the top, after I had done my homework and listed my top five diapers that I wanted, as asked, and the first one was the Mega Max and that was what they approved period Now that I've proven that I need them, I don't have to prove anything else and I can continue to use those diapers because they work for me.

I also think that having cerebral palsy, and using a wheelchair for as long as I have, may have contributed to it, because I was constantly being pulled in and out of rehab centers to help me with extended therapy. As normal, they want you to be mobile and be able to do a lot of different things And that's why the urine therapy, But I feel as when I went in there I was making a huge backstep, they had me using my wheelchair all the time, and by the time a week passed I was probably ready for a diaper, because I couldn't hold anything at night, because no one would take me to the bathroom. Then this starts with a whole bunch of people telling me that would be easier for them if I wore a diaper, And then I was in diapers, and sometimes I would be given heck and sometimes it would be OK. Whatever happened, I was constantly worrying about what was happening to me as some of these people were really nasty and did nasty things. Because of me being in diapers 24/7 for almost actually it's eight weeks the first time and 2nd time it was for six weeks, I was basically in diapers for 14 solid weeks. This made it harder for me to be able to retrain and I knew and I knew my parents were going to be angry, but I just told them that that's what they did, and then they were fine with it, but there were other things that were traumatic. i'll spare that here But to say that incontinence fun, is NOT true for many, but when you were when you were totally incontinent and you have no choice because you don't have any control, you figure out ways to handle it. I don't know if my CP makes my incontinence worse because of the fact that things are changing in my body and my ability to be mobile is changing as well, but when I end up having accidents and I'm not sure what is going on or when it's happening, I'm always happy to have a diaper on, And because of that, I don't have to worry anymore, and I can live my life to the highest standard possible.

So I think the reason why I'm incontinent as well as a diaper lover, is because of the fact that I was in rehab for 14 weeks straight, And the fact that I always like the feeling and the smells that diapers illicit. Many people would say that wearing diapers is a chore, but in my case it can be annoying, because you constantly have to be on the alert to be able to change, and sometimes things happen in places in situations that you wish it didn't, but when you don't have a choice, then you have to be able to make appropriate choices whether with your clothing, your equipment, your supplies, the way you handle your bathroom management, maybe medicine management, and being able to quickly realize when you should change, because you don't want to be hanging around in a dirty diaper for too long, for that causes skin breakdown and wicked diaper rush, i've dealt with that and it's no fun.

I'm just so glad that there are people that accept that there are people that are incontinent! many times people would say that we were "lazy" Or other words that describe the situation where we wear diapers to handle our incontinence. Incontinence is nothing to fear, and incontinence in my mind is the least of my medical conditions that I have to worry about. I can deal with my incontinence, and I choose to deal with it using diapers, it also helps with my feelings and all of the urges that I deal with period Since wearing diapers is not a problem, wearing diapers helps me deal with those things, and makes me feel safe And my stress level has been brought down to zero or pretty close. I'd rather wear diapers for the rest of my life than have consonant worrying about things that I can't control: And in my case, incontinence is something I can't control, So the best thing I can do is to accept it, And accept that I need diapers, and accept that there's no shame in wearing them and there's no reason to feel guilty said or any of those types of because a diaper is there for a reason, here we can discuss that, and we deal with things that cause incontinence or other conditions. my CP in my mind is the main condition, while incontinence and the others listed on my medical profile are subconditions or problems that arise because of my age and because of my CP.

I would definitely interested to hear others diagnosis and be able to determine how they deal with their incontinence or their symptoms and diagnosis. the one thing that's a real pain in the neck is my IBS or my diverticulitis because sometimes that can really come up on me and really cause me problems. i'm glad that there are people who do then continents other than myself, and I know I'm not alone, and that I have good friends that help me to realize that there's no shame in wearing diapers are using them or needing them. It's just a fact of life that you deal with.

Brian

[John Davis]

Thanks for your very detailed explanation.  I am amazed that you were able to get MegaMax via Medicaid.  Well done!

--John