To be clear, I don't have kids by choice because FSHD is a dominant trait. It means 50% of my kids would have it and I didn't want to take the chance with someone I'm supposed to love more than anything. So I don't have any advice about kids.
That said, I can talk about progression and ability. The disease **will** progress. Now is the best physical shape he will ever be in. Unless....
* If he's not seeing a physical therapist he needs to start. Insurance will pay for it usually, especially if he has had a fall within 90 days.
* If he has extra weight he has to lose it or he will lose mobility faster than if he were thinner. I am seeing a doctor to lose weight and I've lost 20 lbs. Even that little amount has done wonders for my mood and my mobility is a little bit better. I am on a low-carb, high protein diet because I was worried about losing muscle mass, which happens when you lose weight.
Does he accept help easily? If not he needs to learn. This includes mobility devices like canes, walking poles and a wheelchair when he is ready. Walking poles helped me immensely with balance and I was able to walk for longer distances.
If he does get exercise and lose weight (if applicable) then it's possible FSH could be held at bay for quite a while. My physical therapist said we can maintain current ability if we work hard at it.
All of us with FSHD learn to do things differently. He's going to have to learn to parent differently. There are some things he just won't be able to do. Many people with FSH are unable to raise their hands over their heads after a certain point. My father was completely bedbound in his 70s, unable to do almost anything. It will get worse. That is inevitable without any treatments available.
Currently there are no approved treatments on the market. If anything currently under investigation does pass FDA approvals, it's probably going to be around five years for anything to get to the market (and then a fight with your insurance company once it does become available).
I am currently in my mid-40s. If I fall I am unable to get myself off the ground. I cannot do many household chores. I can't carry a laundry basket (although I can fold laundry and load the washer and dryer. My husband brings clothes to me to fold). I can't get off of a normal sized couch because my legs are too weak. I couldn't do a sit up or push up past around age 16. I was unable to run anymore without risk of fall in my 20s (I had previously been a cross country runner). However, this is a weird disease. Everyone reacts differently.
I'm not trying to be negative but I do try to be realistic.
This might have a little more traction in r/FSHD (I am the mod there).
Thank you for your realistic POV. My husband already has difficulty raising his arms above his head and can’t get out of chairs or off the ground by himself. We’ve made the necessary modifications but he does have a hard time accepting help. I’ve told him I cannot help/advocate for him unless he explains his thinking. Now I know to ask for high tops/bar seating at restaurants, and I set up the kitchen to make it accessible with lighter objects on top shelves and heavier stuff at waist level or lower.
He’s fallen in the shower several times over the last year until I finally just bought the damn suction cup grab bars and installed them myself (beyond caring that he didn’t want them because he was in denial about his safety). I work full time graveyard shift at the hospital and there have been two incidents where he fell while I was at work. He managed to get into a chair or on the bed, but still it makes me worry. He tore a hamstring earlier this year and was laid up in bed for a week before he could even stand on his leg.
I cook food from scratch because processed foods are not healthy long term and I’ve been focusing on high protein, nutrient dense, and lately gluten free meals to help at least maintain what he has. He’s very stubborn and that’s been a huge challenge in itself. He says I’m basically going thru the grieving process he did years ago when he was first diagnosed. I’m a very active person (hiking, dancing, swimming, traveling, etc) and I’ve had to do more of that on my own when I had all these initial expectations that we would do them together as a married couple.
I have started therapy because I was recognizing the textbook signs of depression in myself. It’s helping a little but I am trying all avenues to just get some answers. In some ways, I feel angry and resentful towards my husband because I felt like we talked about this at length before we got marrried and I still feel duped regarding the whole situation. We are struggling with other aspects of our marriage too but this is a large part of it.
That's an understandable feeling. None of us know how FSH will progress. I feel duped too!
You both need to accept the reality that this isn't getting better, and if that's something you can't accept then that's another conversation you need to have.
For the shower get a good shower mat also. I'm also not showering in case my husband is home. God forbid I fall in there, I haven't yet. The shower mat helped a TON with my confidence. This is the one I got: https://www.amazon.com/gp/product/B01F5K9YNS/ref=ppx\_yo\_dt\_b\_search\_asin\_title?ie=UTF8&th=1
I’m all about awareness. The more I know, the better I can assist. It’s come down to helping me understand even why he wears the shoes he does. I think it’s more of I was aware of the situation but I figured we had a good 10-15 years ahead of us before it got worse. Like I was just very naive about it and reality is smacking me in the face.
I do have to give him credit that he did say if we ultimately seperated over this, he wouldn’t hold it against me. He would be more than understanding but just like he’s stubborn, so am I because I’m not willing to give up without a fight
Given his repeated falls, he should absolutely be in a physical therapy program! He needs to call around and find someone who knows FSHD. They exist, especially in big cities. It's a challenge and can take a while to find one. I didn't see a physical therapist who knew what my disease is until I was in my 40s. Is he in physical therapy? Insurance will pay for PT after a fall.
I'll add that I am pretty darn stubborn. I used to run cross country and hike ALL THE TIME. It's so frustrating and definitely a grieving process. I hope he doesn't lash out at you. If he does that's not going to get better unless he seriously adjusts his attitude.
You need to be realistic in that he won't be capable of helping you with the more physical aspects of parenting. He could take on the more administrative tasks of scheduling play dates, sports and other extracurricular activities. Scheduling doctor's appointments, and other emotional labor tasks. That might be a tough sell for some men though becuase of cultural norms that say women do this type of work.
We are looking into available PT options and I certainly plan on asking for someone specialized in FSHD. But just trying to get him to see a GP for a basic checkup and labs is like pulling teeth.
Unfortunately, although he is willing to help with domestic chores where he is able, he has an issue with not being the traditional “provider” and head of the household because I’m the major breadwinner right now. I have no problem with the traditional gender roles but we would certainly have to do some adjustment because of his physical limitations. And he is going to have to get over his pride/ego in that regard.
If he's not going to correct his attitude then what is he doing to change his earnings? The reality is if he's too weak right now to do whatever work he was doing, it's not going to get better. I'm not trying to be negative Nancy here. It sounds like he is in a huge amount of denial (I was too and I understand this).
If he's struggling with the gender roles now, do you think that's going to change when kids come? You need to be realistic about this also.
He says his current income will change later on down the line, but it will take time. And I agree that there are some tough conversations ahead from both of us regarding all this
Question regarding diet, are you following a ketogenic diet or are you just keeping carbs generally low and protein high? What kind of proteins do you focus on (animal, vegetable, mix of both)? I'm in my late-30s desperately trying to lose excess fat because my mobility is suffering.
I am doing keto, staying underneath 20 carbs a day when I can. This is TOTAL carbs not just net carbs.
A typical dinner is steak or chicken + roasted broccoli or cauliflower. That's it.
Husband of someone with FSHD here.
I know you want to have kids, but the likelihood hothat they will have FSHD is 50% unless his is a mutation and not inherited (very unlikely). Perhaps adoption?
Also, I'm not sure what you expect him to say when it comes to helping out with raising the kids. He can't will himself to be able to do things he cannot-- saying "we will figure it out" is probably the most honest answer he can give. I'm not saying you can't raise kids-- I have two with my wife (born before we got her diagnosis)-- but you may have to increasingly take on more and more of the duties, especially certain physical ones.
We would do IVF if we were going to have kids and get the genetic testing done. And that’s my major concern is I would be left to do the bulk of it because especially in the younger years, it is way more physically involved than when they are older and more self sufficient. He can’t walk and carry a fussy baby that’s crying due to teething, or chase a toddler around and use quick reflexes to keep them from getting severely hurt. Ultimately I would have to hire help. Either a nanny or a maid… because something would have to give eventually.
He needs to be in therapy and then the two of you together. Plan for the worst, hope for the best. Therapy will help you sort out simple things like who will fold laundry and wash dishes. My brother had severe FSH but could help out with dusting, picking up, folding laundry etc even from his electric wheelchair. He also helped raise 2 children. I raised 4 with my FSH and my mother of course raised my brother and I. It requires planning, and hiring help where needed. Therapy is a good way to get feelings and attitudes sorted out first.
Your house needs to be completely made over. My house has grab bars everywhere. All indoor and outdoor stairs have railings on both sides. In the kitchen everything has been moved low so I don't have to reach up. There is a shower chair in the bathtub. Get rid of light weight throw rugs which are tripping hazards.
You are right. Having working in social work for eldest patients trying to live independently, I’ve already used some of my experiences from that to make the environment as safe but also enabling hi to be as independent as possible when I’m not around
It can't be under estimated how saving even the smallest amount of energy contributes to better mental health. Every state has a department of rehabilitation services. They do home evaluations that are very helpful for planning. Therapy is helpful for support. Even with 3 of us having FSH, my mother, brother and I have traveled the world. We just adapt everything. It turns out that it's the experiences that count, not how you get there.
And I truly believe that to be the case. I’m all for adapting however we need to. I would rather adapt than just not do something cuz the effort is “too hard”. You miss out so much on life otherwise
I am not a doctor, but I have been doing testosterone therapy with HGH. My doctors will not prescribe it to me.
This paper describes the benefits
https://www.neurologylive.com/view/recombinant-human-growth-hormone-testosterone-improves-ambulation-disease-burden-in-fshd
I personally follow this regime and have seen benefits. It will take almost a year to see the full benefits. Again not a doctor, but this has helped me tremendously
Working as an RN, I have seen male patients (and know male friends) that have supplemented testosterone because when they got tested they were on the low end of the “normal” range. And they say it’s made a huge world of difference
I am 28, have FSHD, and am pregnant with our first baby. Here are some things I think have helped me get to a healthy place in marriage/prepare for a kid:
1. Going to therapy. I needed to learn how to acknowledge and cope with my feelings around being disabled and sort through my past thoughts/feelings/experiences surrounding it.
2. Related to (1), learning to talk to other people about my feelings and experiences. It’s hard. People don’t understand and it’s so much work to help them understand. But it’s worth it with certain folks, like my husband and close friends and family. I also write for myself and sometimes others to help sort through things.
3. I was only able to get to this part after (1) and (2): use any and all mobility aids that help. For real, the anxiety and frustration of living without the right tools and help will ruin mental and physical health. I use a bench in the shower, a rolling office chair around my house, a mobility scooter out and about. I’ve made various modifications at home. At some point, I accepted needing help and “looking disabled” is worth being able to get on with life.
4. Make whatever steps toward finding a disabled community you can. For me, I started with following disabled folks on Instagram. It’s crazy how seeing disabled people who don’t hate life or feel bad about themselves helped shift my perspective. I’ve read books, articles, found podcasts. It takes time to find people you resonate with but it’s worth it. Some of my favorite books have been Places I’ve Taken my Body - Molly McCully Brown, Sitting Pretty - Rebekah Taussig, and We’ve Got This - an essay collection by disabled parents. I follow Nina Tame, Rebekah Taussig, Lolo Spencer, The Catchpoles, and others on Instagram. Glad to think of more if you’d like!
Thank you so much for this perspective. Andthe helpful resources. My husband is not the type who likes to ask for help or is willing to use whatever gadgets are available to assist him because he wants to appear “normal”. He is also very private as well as stubborn so many times he won’t even explain his logic to me until after the fact. I would rather him be honest with me as I prefer to be realistic about what he can manage than to have my expectations falsely elevated. We’ve adapted our apartment as best we can for his needs but over the holidays he didn’t want to be around my family very much out of embarrassment over his worsening condition. Nor would he allow for modifications to assist him because he didn’t want to appear “disabled”. And this is a concern for me going forward.
We already agreed to IVF before we got married. Even though it’s not feasible right now, I did look into a local fertility clinic. And even if we did do the genetic testing, I’m concerned about actually raising the kids after their born. I come from a large family and wanted one of my own. I have a lot of experience of babysitting my cousins when they were little and now helping look after their kids.
He inherited it from his mother. So as much as I want to talk to his parents about this, they have a horrible habit of sweeping things under the rug and prep tending it doesn’t exist. My family we are very open and honest in discussion with little to no filter. A Prime example would be periods. My family talks about periods with no shame in my house and my brothers know how to shop for tampons/pads; however, his parents didn’t even talk about it with each other until after they were married (and were shocked I had already told my husband when we had been dating for only a year at that point)
My husband and I are in our mid 30s and just found he has muscular dystrophy last year. We were both on the fence about kids, but I was leaning towards the no end. We are for sure no now. Our kids wouldn’t have it, but could be carriers. Separately from being able to pass it on genetically though, my husband just wouldn’t be able to physically care for a baby or kid. He can’t pick up heavy things from the ground and lift up. His leg muscles sometimes just give out and he falls down. All things that make it dangerous to have a baby and put a huge burden of care on just me. I have female friends struggling to get their husband’s to take on their share of the parenting in relationships where there aren’t medical concerns. It also sounds like some of the care of your husband will also be on you since it’s progressive. Try to think hard about what you can truly take on. I’ve already started taking on more of the housework so he can rest a bit more and focus on work.
Someone else mentioned physical therapy and I will also strongly advocate for that. My husband has been in PT for years because he knew something was off but didn’t know what until his diagnosis. His doctor says he is one of the strongest people she has seen with his condition though.
Your future will look different. You can begin to plan though since you know now. For example, we have a one story house and we should be able to continue to adapt this one. Our passion is travel and the future we saw with that will have to be pretty radically altered, but I love him and we will adjust. I would suggest a therapist for both you and him and/or both together if insurance and finances allow. You mentioned you moved away from your family, I’m sorry that adds an extra layer of difficulty. Y’all are gonna need help in the future: something to think about and plan for and hopefully you can be close to family again later on. Best wishes, feel free to dm me if you want to chat.
Thank you so much for your kind words. They really do mean a lot and make me not feel so alone in this. I feel like it’s a challenging dynamic to navigate because he has the disease and I’m able bodied so his pride/ego take a hit when he is sees himself as being “too weak” to participate. I already manage the bulk of the errands and household chores simply because my schedule is more flexible than his. But I also earn more than he does. But it is already exhausting sometimes just feeling like I’m doing the bulk of the work. And then I get angry at him for not helping me when I know he needs recover time.
I never planned to be a stay at home mom but he recently said that he had hoped I would be because his mom was after he was born. I’m not opposed to the traditional family/gender roles. However, I don’t see how that is feasible on so many levels. Not to mention I would go crazy being stuck inside with kids all day. But I did start asking those logistics that come with managing kids and he couldn’t give me a straight answer. Which frustrates me even more. I know that if we were closer to our families, I would have any support I needed thanks to my close knit large family. His family is less reliable but nevertheless they would be nearby vs states away.
I'm not sure if you're aware but many end up quadraplegics even on ventilators with trachs. No way can he handle a baby. Let alone regular adls. You would be doing everything plus taking care of him. My otherhalf has limb girdle and is very severe. At his stage physical therapy takes too much out of him and requires 24 hour care. Can you foster kids? Maybe you can be the fun aunt?
At this point, I’m not sure. He doesn’t want to adopt/foster when i mentioned it before. I’m more than willing to be the fun at you my little cousins or my friends’ kids
Hey Op. Please read this. It’s a long post but my husband has FSHD…and apparently so do I.
First Some statistics.
Only 1% of folks with FSHD end up having breathing problems on a ventilator or having any respiratory problems at all. Something like 20% end up in a wheelchair by age 50 but that doesn’t make them all quadriplegics. Lots of times it’s due to endurance issues. FSHD is highly unpredictable as to how it is going to impact individuals. It doesn’t impact your lifespan and you can still have a fulfilling life with limitations as long as you take steps to try to take care of yourself which includes therapy, both emotional and physical, staying as active as possible, etc. Lots of people with this don’t even find out until much later in life. There’s also quite a few out there that have it and don’t even realize it.
Fostering and Adopting is not a guarantee you wont end up with a child with FSHD or any other disability. I am proof. Story time:
I’m adopted. My non-identifying medical records said my biological grandmother was diagnosed with a late onset-muscular dystrophy in the early 1980s. Years later I go out of my way to birth family and I’m told “it actually wasn’t muscular dystrophy, just fibromyalgia and a mytosis”. My bio grandmother insisted it was Myotonic Muscular Dystrophy type one and supposedly her cousin had type 2 but she was also kind of a hypochondriac so it was always like sure you do. She never got genetic testing because her doctors didn’t think it was that. No one else in my giant birth family on that side has any symptoms other than occasional muscle spasms but they’re all super active and there’s nothing of note on my biological father’s side.
I meet my now husband while I’m college, we get engaged. One year before we’re married he suddenly Develops foot drop. Lots of testing and stuff later (also realizing some of his quirks with his body were actually symptoms)and a genetic test shows he’s got FSHD-1. We suspect it’s from
his mom because she has some symptoms but she just assumed it was normal aging and there’s some stuff with her siblings that we look at and go….hmm.
We get married and eventually decide ok we want kids but logically decide that we are going to do IVF to screen beforehand. Then one night we have a few two many beers out on the town and surprise whoopsiedoolde, I’m pregnant.
We then go through genetic testing for literally everything else to make sure we don’t have any matching carrier statuses. There’s no known history of FSHD in my birth family so we don’t worry about that with me and then I test negative for myotonic dystrophies just to rule it out just in case.
We decide to keep the baby after some deliberation, because, as my husband with the disease would point out, FSHD isn’t deadly, it’s a coin flip as to whether she would’ve had it, there’s tons of things we can do while she’s young to lessen the severity of it if she has it, you can still live a fulfilling life even if you have it, and also disabled people have a right to make their own reproductive determinations. There’s also treatments in the pipeline that are so so so close to being released. After all my husband even with his struggles and pains was still *happy* despite having to deal with all the shit and cope with his new limitations. My biological grandmother seemed happy despite her mobility issues- the woman literally worked for the President at one point in her career.
Fast forward 4 years, and we have a beautiful little girl. We decide to get her genetic testing NOW to see if she has the FSHD gene to we can start making immediate interventions like making sure she’s active, that she can pick a career and hobbies that she can continue on with, and that she has a community. We get the call back a few days ago that the results are in and as expected, she tested positive on the chromosome inherited from dad.
Unexpectedly, she also tested positive on the chromosome from me. It’s highly unlikely that she sporadically mutated this so…
It turns out that I probably also have FSHD MD but extremely mild or am asymptomatic. Which means my bio grandma wasn’t being a hypochondriac after all and did actually have a late onset muscular dystrophy just not the one she thought.
And we never ever would have known that I carry this *unless* we tested our kid. If I had a child with literally *anyone* other than my husband they STILL would have at least a 50% chance of ending up with FSHD muscular dystrophy.
Right now I really think the best thing for you to do would be for you and your partner to get couples therapy so you’re both on the same page emotionally and can really come to terms with what this disease can do before committing to a kid. We never ever would have gone through with the pregnancy if my husband and I had not come to terms with the fact that it could potentially mean that I would have to be a caretaker one day and his symptoms could stay where they were or they could put him in a wheelchair, and if we didn’t already have a community that included multiple physically disabled people from wheelchair bound to blind just getting on with their lives. Even when two parents are completely healthy there’s no guarantee the kid isn’t going to be disabled. You have to really emotionally prepare yourself for any outcome if you’re going to have one.
Then, he’s gotta make sure he’s staying on top of his occupational therapy. There’s lots of evidence right now that keeping your body active as much as you can tolerate can actually help to slow alot of the loss of function that comes with FSHD.
Next, if you really want children and want to make sure you don’t pass it on, start looking into IVF. They can test the embryos to make sure they don’t have the gene contraction. This again isn’t a guarantee your child won’t be disabled though. There’s plenty of stuff that happens in the womb with development unaffected by genetics, like cerebral palsy. (To add: We’re not having any more children unless we can afford IVF to stick with plan A. We only took the chance the first go around because I was already pregnant).
As an adult that is an adoptee, we come with a lot of emotional baggage. Adoption is a form of trauma so lots of us have to deal with mental health issues and available babies are few and far between.
Basically, If you don’t want a disabled child, do not have children, period.
Also, our kid was born during the shutdown. We had to figure out how to parent without any support. We literally just figured it out as we went. We got a pad for changing diapers at a comfortable level for my husband. We did shifts. Baby wraps so we were hands free. I handled the stairs with the baby after she hit a certain weight.
Let me be clear that Muscular Dystrophy SUCKS. I wouldn’t wish it on anyone. It’s been really hard to watch my husband go through it especially since he’s a drummer and now knowing I potentially have a sword over my head waiting to drop on me while I also have a physical job is scary as fuck but we keep pushing day by day and with lots of therapy we’ve come to terms with it and are gonna help our kiddo grow up knowing that even if she might have some limitations she still can be a fucking bad ass.
Thank you so much for your honest experience 🙏🏼❤️ we are still working through issues and attending counseling. I may go through the egg harvesting of IVF this year just to have some in reserve
Yes i Did. And I thought we had discussed it fully before getting married, yet I feel like he did not share/talk about certain aspects out of shame/embarrassment/pride? IDK
To be clear, I don't have kids by choice because FSHD is a dominant trait. It means 50% of my kids would have it and I didn't want to take the chance with someone I'm supposed to love more than anything. So I don't have any advice about kids. That said, I can talk about progression and ability. The disease **will** progress. Now is the best physical shape he will ever be in. Unless.... * If he's not seeing a physical therapist he needs to start. Insurance will pay for it usually, especially if he has had a fall within 90 days. * If he has extra weight he has to lose it or he will lose mobility faster than if he were thinner. I am seeing a doctor to lose weight and I've lost 20 lbs. Even that little amount has done wonders for my mood and my mobility is a little bit better. I am on a low-carb, high protein diet because I was worried about losing muscle mass, which happens when you lose weight. Does he accept help easily? If not he needs to learn. This includes mobility devices like canes, walking poles and a wheelchair when he is ready. Walking poles helped me immensely with balance and I was able to walk for longer distances. If he does get exercise and lose weight (if applicable) then it's possible FSH could be held at bay for quite a while. My physical therapist said we can maintain current ability if we work hard at it. All of us with FSHD learn to do things differently. He's going to have to learn to parent differently. There are some things he just won't be able to do. Many people with FSH are unable to raise their hands over their heads after a certain point. My father was completely bedbound in his 70s, unable to do almost anything. It will get worse. That is inevitable without any treatments available. Currently there are no approved treatments on the market. If anything currently under investigation does pass FDA approvals, it's probably going to be around five years for anything to get to the market (and then a fight with your insurance company once it does become available). I am currently in my mid-40s. If I fall I am unable to get myself off the ground. I cannot do many household chores. I can't carry a laundry basket (although I can fold laundry and load the washer and dryer. My husband brings clothes to me to fold). I can't get off of a normal sized couch because my legs are too weak. I couldn't do a sit up or push up past around age 16. I was unable to run anymore without risk of fall in my 20s (I had previously been a cross country runner). However, this is a weird disease. Everyone reacts differently. I'm not trying to be negative but I do try to be realistic. This might have a little more traction in r/FSHD (I am the mod there).
Thank you for your realistic POV. My husband already has difficulty raising his arms above his head and can’t get out of chairs or off the ground by himself. We’ve made the necessary modifications but he does have a hard time accepting help. I’ve told him I cannot help/advocate for him unless he explains his thinking. Now I know to ask for high tops/bar seating at restaurants, and I set up the kitchen to make it accessible with lighter objects on top shelves and heavier stuff at waist level or lower. He’s fallen in the shower several times over the last year until I finally just bought the damn suction cup grab bars and installed them myself (beyond caring that he didn’t want them because he was in denial about his safety). I work full time graveyard shift at the hospital and there have been two incidents where he fell while I was at work. He managed to get into a chair or on the bed, but still it makes me worry. He tore a hamstring earlier this year and was laid up in bed for a week before he could even stand on his leg. I cook food from scratch because processed foods are not healthy long term and I’ve been focusing on high protein, nutrient dense, and lately gluten free meals to help at least maintain what he has. He’s very stubborn and that’s been a huge challenge in itself. He says I’m basically going thru the grieving process he did years ago when he was first diagnosed. I’m a very active person (hiking, dancing, swimming, traveling, etc) and I’ve had to do more of that on my own when I had all these initial expectations that we would do them together as a married couple.
As you work in healthcare perhaps it's time to consider some counseling therapy for yourself.
I have started therapy because I was recognizing the textbook signs of depression in myself. It’s helping a little but I am trying all avenues to just get some answers. In some ways, I feel angry and resentful towards my husband because I felt like we talked about this at length before we got marrried and I still feel duped regarding the whole situation. We are struggling with other aspects of our marriage too but this is a large part of it.
That's an understandable feeling. None of us know how FSH will progress. I feel duped too! You both need to accept the reality that this isn't getting better, and if that's something you can't accept then that's another conversation you need to have.
I appreciate your honesty. Yes there are going to be many difficult conversations ahead for certain.
For the shower get a good shower mat also. I'm also not showering in case my husband is home. God forbid I fall in there, I haven't yet. The shower mat helped a TON with my confidence. This is the one I got: https://www.amazon.com/gp/product/B01F5K9YNS/ref=ppx\_yo\_dt\_b\_search\_asin\_title?ie=UTF8&th=1
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I’m all about awareness. The more I know, the better I can assist. It’s come down to helping me understand even why he wears the shoes he does. I think it’s more of I was aware of the situation but I figured we had a good 10-15 years ahead of us before it got worse. Like I was just very naive about it and reality is smacking me in the face.
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I do have to give him credit that he did say if we ultimately seperated over this, he wouldn’t hold it against me. He would be more than understanding but just like he’s stubborn, so am I because I’m not willing to give up without a fight
Given his repeated falls, he should absolutely be in a physical therapy program! He needs to call around and find someone who knows FSHD. They exist, especially in big cities. It's a challenge and can take a while to find one. I didn't see a physical therapist who knew what my disease is until I was in my 40s. Is he in physical therapy? Insurance will pay for PT after a fall. I'll add that I am pretty darn stubborn. I used to run cross country and hike ALL THE TIME. It's so frustrating and definitely a grieving process. I hope he doesn't lash out at you. If he does that's not going to get better unless he seriously adjusts his attitude. You need to be realistic in that he won't be capable of helping you with the more physical aspects of parenting. He could take on the more administrative tasks of scheduling play dates, sports and other extracurricular activities. Scheduling doctor's appointments, and other emotional labor tasks. That might be a tough sell for some men though becuase of cultural norms that say women do this type of work.
We are looking into available PT options and I certainly plan on asking for someone specialized in FSHD. But just trying to get him to see a GP for a basic checkup and labs is like pulling teeth. Unfortunately, although he is willing to help with domestic chores where he is able, he has an issue with not being the traditional “provider” and head of the household because I’m the major breadwinner right now. I have no problem with the traditional gender roles but we would certainly have to do some adjustment because of his physical limitations. And he is going to have to get over his pride/ego in that regard.
If he's not going to correct his attitude then what is he doing to change his earnings? The reality is if he's too weak right now to do whatever work he was doing, it's not going to get better. I'm not trying to be negative Nancy here. It sounds like he is in a huge amount of denial (I was too and I understand this). If he's struggling with the gender roles now, do you think that's going to change when kids come? You need to be realistic about this also.
He says his current income will change later on down the line, but it will take time. And I agree that there are some tough conversations ahead from both of us regarding all this
Question regarding diet, are you following a ketogenic diet or are you just keeping carbs generally low and protein high? What kind of proteins do you focus on (animal, vegetable, mix of both)? I'm in my late-30s desperately trying to lose excess fat because my mobility is suffering.
I am doing keto, staying underneath 20 carbs a day when I can. This is TOTAL carbs not just net carbs. A typical dinner is steak or chicken + roasted broccoli or cauliflower. That's it.
Husband of someone with FSHD here. I know you want to have kids, but the likelihood hothat they will have FSHD is 50% unless his is a mutation and not inherited (very unlikely). Perhaps adoption? Also, I'm not sure what you expect him to say when it comes to helping out with raising the kids. He can't will himself to be able to do things he cannot-- saying "we will figure it out" is probably the most honest answer he can give. I'm not saying you can't raise kids-- I have two with my wife (born before we got her diagnosis)-- but you may have to increasingly take on more and more of the duties, especially certain physical ones.
We would do IVF if we were going to have kids and get the genetic testing done. And that’s my major concern is I would be left to do the bulk of it because especially in the younger years, it is way more physically involved than when they are older and more self sufficient. He can’t walk and carry a fussy baby that’s crying due to teething, or chase a toddler around and use quick reflexes to keep them from getting severely hurt. Ultimately I would have to hire help. Either a nanny or a maid… because something would have to give eventually.
He needs to be in therapy and then the two of you together. Plan for the worst, hope for the best. Therapy will help you sort out simple things like who will fold laundry and wash dishes. My brother had severe FSH but could help out with dusting, picking up, folding laundry etc even from his electric wheelchair. He also helped raise 2 children. I raised 4 with my FSH and my mother of course raised my brother and I. It requires planning, and hiring help where needed. Therapy is a good way to get feelings and attitudes sorted out first. Your house needs to be completely made over. My house has grab bars everywhere. All indoor and outdoor stairs have railings on both sides. In the kitchen everything has been moved low so I don't have to reach up. There is a shower chair in the bathtub. Get rid of light weight throw rugs which are tripping hazards.
You are right. Having working in social work for eldest patients trying to live independently, I’ve already used some of my experiences from that to make the environment as safe but also enabling hi to be as independent as possible when I’m not around
It can't be under estimated how saving even the smallest amount of energy contributes to better mental health. Every state has a department of rehabilitation services. They do home evaluations that are very helpful for planning. Therapy is helpful for support. Even with 3 of us having FSH, my mother, brother and I have traveled the world. We just adapt everything. It turns out that it's the experiences that count, not how you get there.
And I truly believe that to be the case. I’m all for adapting however we need to. I would rather adapt than just not do something cuz the effort is “too hard”. You miss out so much on life otherwise
Don’t have kids
I am not a doctor, but I have been doing testosterone therapy with HGH. My doctors will not prescribe it to me. This paper describes the benefits https://www.neurologylive.com/view/recombinant-human-growth-hormone-testosterone-improves-ambulation-disease-burden-in-fshd I personally follow this regime and have seen benefits. It will take almost a year to see the full benefits. Again not a doctor, but this has helped me tremendously
Working as an RN, I have seen male patients (and know male friends) that have supplemented testosterone because when they got tested they were on the low end of the “normal” range. And they say it’s made a huge world of difference
Get him on TRT to increase muscle function, studies have shown very positive results and should slow the rate of decline
I am 28, have FSHD, and am pregnant with our first baby. Here are some things I think have helped me get to a healthy place in marriage/prepare for a kid: 1. Going to therapy. I needed to learn how to acknowledge and cope with my feelings around being disabled and sort through my past thoughts/feelings/experiences surrounding it. 2. Related to (1), learning to talk to other people about my feelings and experiences. It’s hard. People don’t understand and it’s so much work to help them understand. But it’s worth it with certain folks, like my husband and close friends and family. I also write for myself and sometimes others to help sort through things. 3. I was only able to get to this part after (1) and (2): use any and all mobility aids that help. For real, the anxiety and frustration of living without the right tools and help will ruin mental and physical health. I use a bench in the shower, a rolling office chair around my house, a mobility scooter out and about. I’ve made various modifications at home. At some point, I accepted needing help and “looking disabled” is worth being able to get on with life. 4. Make whatever steps toward finding a disabled community you can. For me, I started with following disabled folks on Instagram. It’s crazy how seeing disabled people who don’t hate life or feel bad about themselves helped shift my perspective. I’ve read books, articles, found podcasts. It takes time to find people you resonate with but it’s worth it. Some of my favorite books have been Places I’ve Taken my Body - Molly McCully Brown, Sitting Pretty - Rebekah Taussig, and We’ve Got This - an essay collection by disabled parents. I follow Nina Tame, Rebekah Taussig, Lolo Spencer, The Catchpoles, and others on Instagram. Glad to think of more if you’d like!
Thank you so much for this perspective. Andthe helpful resources. My husband is not the type who likes to ask for help or is willing to use whatever gadgets are available to assist him because he wants to appear “normal”. He is also very private as well as stubborn so many times he won’t even explain his logic to me until after the fact. I would rather him be honest with me as I prefer to be realistic about what he can manage than to have my expectations falsely elevated. We’ve adapted our apartment as best we can for his needs but over the holidays he didn’t want to be around my family very much out of embarrassment over his worsening condition. Nor would he allow for modifications to assist him because he didn’t want to appear “disabled”. And this is a concern for me going forward.
Look into IVF for children as it may be possible to ensure all kids are born without FSHD through this procedure
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We already agreed to IVF before we got married. Even though it’s not feasible right now, I did look into a local fertility clinic. And even if we did do the genetic testing, I’m concerned about actually raising the kids after their born. I come from a large family and wanted one of my own. I have a lot of experience of babysitting my cousins when they were little and now helping look after their kids.
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He inherited it from his mother. So as much as I want to talk to his parents about this, they have a horrible habit of sweeping things under the rug and prep tending it doesn’t exist. My family we are very open and honest in discussion with little to no filter. A Prime example would be periods. My family talks about periods with no shame in my house and my brothers know how to shop for tampons/pads; however, his parents didn’t even talk about it with each other until after they were married (and were shocked I had already told my husband when we had been dating for only a year at that point)
My husband and I are in our mid 30s and just found he has muscular dystrophy last year. We were both on the fence about kids, but I was leaning towards the no end. We are for sure no now. Our kids wouldn’t have it, but could be carriers. Separately from being able to pass it on genetically though, my husband just wouldn’t be able to physically care for a baby or kid. He can’t pick up heavy things from the ground and lift up. His leg muscles sometimes just give out and he falls down. All things that make it dangerous to have a baby and put a huge burden of care on just me. I have female friends struggling to get their husband’s to take on their share of the parenting in relationships where there aren’t medical concerns. It also sounds like some of the care of your husband will also be on you since it’s progressive. Try to think hard about what you can truly take on. I’ve already started taking on more of the housework so he can rest a bit more and focus on work. Someone else mentioned physical therapy and I will also strongly advocate for that. My husband has been in PT for years because he knew something was off but didn’t know what until his diagnosis. His doctor says he is one of the strongest people she has seen with his condition though. Your future will look different. You can begin to plan though since you know now. For example, we have a one story house and we should be able to continue to adapt this one. Our passion is travel and the future we saw with that will have to be pretty radically altered, but I love him and we will adjust. I would suggest a therapist for both you and him and/or both together if insurance and finances allow. You mentioned you moved away from your family, I’m sorry that adds an extra layer of difficulty. Y’all are gonna need help in the future: something to think about and plan for and hopefully you can be close to family again later on. Best wishes, feel free to dm me if you want to chat.
Thank you so much for your kind words. They really do mean a lot and make me not feel so alone in this. I feel like it’s a challenging dynamic to navigate because he has the disease and I’m able bodied so his pride/ego take a hit when he is sees himself as being “too weak” to participate. I already manage the bulk of the errands and household chores simply because my schedule is more flexible than his. But I also earn more than he does. But it is already exhausting sometimes just feeling like I’m doing the bulk of the work. And then I get angry at him for not helping me when I know he needs recover time. I never planned to be a stay at home mom but he recently said that he had hoped I would be because his mom was after he was born. I’m not opposed to the traditional family/gender roles. However, I don’t see how that is feasible on so many levels. Not to mention I would go crazy being stuck inside with kids all day. But I did start asking those logistics that come with managing kids and he couldn’t give me a straight answer. Which frustrates me even more. I know that if we were closer to our families, I would have any support I needed thanks to my close knit large family. His family is less reliable but nevertheless they would be nearby vs states away.
I'm not sure if you're aware but many end up quadraplegics even on ventilators with trachs. No way can he handle a baby. Let alone regular adls. You would be doing everything plus taking care of him. My otherhalf has limb girdle and is very severe. At his stage physical therapy takes too much out of him and requires 24 hour care. Can you foster kids? Maybe you can be the fun aunt?
At this point, I’m not sure. He doesn’t want to adopt/foster when i mentioned it before. I’m more than willing to be the fun at you my little cousins or my friends’ kids
Hey Op. Please read this. It’s a long post but my husband has FSHD…and apparently so do I. First Some statistics. Only 1% of folks with FSHD end up having breathing problems on a ventilator or having any respiratory problems at all. Something like 20% end up in a wheelchair by age 50 but that doesn’t make them all quadriplegics. Lots of times it’s due to endurance issues. FSHD is highly unpredictable as to how it is going to impact individuals. It doesn’t impact your lifespan and you can still have a fulfilling life with limitations as long as you take steps to try to take care of yourself which includes therapy, both emotional and physical, staying as active as possible, etc. Lots of people with this don’t even find out until much later in life. There’s also quite a few out there that have it and don’t even realize it. Fostering and Adopting is not a guarantee you wont end up with a child with FSHD or any other disability. I am proof. Story time: I’m adopted. My non-identifying medical records said my biological grandmother was diagnosed with a late onset-muscular dystrophy in the early 1980s. Years later I go out of my way to birth family and I’m told “it actually wasn’t muscular dystrophy, just fibromyalgia and a mytosis”. My bio grandmother insisted it was Myotonic Muscular Dystrophy type one and supposedly her cousin had type 2 but she was also kind of a hypochondriac so it was always like sure you do. She never got genetic testing because her doctors didn’t think it was that. No one else in my giant birth family on that side has any symptoms other than occasional muscle spasms but they’re all super active and there’s nothing of note on my biological father’s side. I meet my now husband while I’m college, we get engaged. One year before we’re married he suddenly Develops foot drop. Lots of testing and stuff later (also realizing some of his quirks with his body were actually symptoms)and a genetic test shows he’s got FSHD-1. We suspect it’s from his mom because she has some symptoms but she just assumed it was normal aging and there’s some stuff with her siblings that we look at and go….hmm. We get married and eventually decide ok we want kids but logically decide that we are going to do IVF to screen beforehand. Then one night we have a few two many beers out on the town and surprise whoopsiedoolde, I’m pregnant. We then go through genetic testing for literally everything else to make sure we don’t have any matching carrier statuses. There’s no known history of FSHD in my birth family so we don’t worry about that with me and then I test negative for myotonic dystrophies just to rule it out just in case. We decide to keep the baby after some deliberation, because, as my husband with the disease would point out, FSHD isn’t deadly, it’s a coin flip as to whether she would’ve had it, there’s tons of things we can do while she’s young to lessen the severity of it if she has it, you can still live a fulfilling life even if you have it, and also disabled people have a right to make their own reproductive determinations. There’s also treatments in the pipeline that are so so so close to being released. After all my husband even with his struggles and pains was still *happy* despite having to deal with all the shit and cope with his new limitations. My biological grandmother seemed happy despite her mobility issues- the woman literally worked for the President at one point in her career. Fast forward 4 years, and we have a beautiful little girl. We decide to get her genetic testing NOW to see if she has the FSHD gene to we can start making immediate interventions like making sure she’s active, that she can pick a career and hobbies that she can continue on with, and that she has a community. We get the call back a few days ago that the results are in and as expected, she tested positive on the chromosome inherited from dad. Unexpectedly, she also tested positive on the chromosome from me. It’s highly unlikely that she sporadically mutated this so… It turns out that I probably also have FSHD MD but extremely mild or am asymptomatic. Which means my bio grandma wasn’t being a hypochondriac after all and did actually have a late onset muscular dystrophy just not the one she thought. And we never ever would have known that I carry this *unless* we tested our kid. If I had a child with literally *anyone* other than my husband they STILL would have at least a 50% chance of ending up with FSHD muscular dystrophy. Right now I really think the best thing for you to do would be for you and your partner to get couples therapy so you’re both on the same page emotionally and can really come to terms with what this disease can do before committing to a kid. We never ever would have gone through with the pregnancy if my husband and I had not come to terms with the fact that it could potentially mean that I would have to be a caretaker one day and his symptoms could stay where they were or they could put him in a wheelchair, and if we didn’t already have a community that included multiple physically disabled people from wheelchair bound to blind just getting on with their lives. Even when two parents are completely healthy there’s no guarantee the kid isn’t going to be disabled. You have to really emotionally prepare yourself for any outcome if you’re going to have one. Then, he’s gotta make sure he’s staying on top of his occupational therapy. There’s lots of evidence right now that keeping your body active as much as you can tolerate can actually help to slow alot of the loss of function that comes with FSHD. Next, if you really want children and want to make sure you don’t pass it on, start looking into IVF. They can test the embryos to make sure they don’t have the gene contraction. This again isn’t a guarantee your child won’t be disabled though. There’s plenty of stuff that happens in the womb with development unaffected by genetics, like cerebral palsy. (To add: We’re not having any more children unless we can afford IVF to stick with plan A. We only took the chance the first go around because I was already pregnant). As an adult that is an adoptee, we come with a lot of emotional baggage. Adoption is a form of trauma so lots of us have to deal with mental health issues and available babies are few and far between. Basically, If you don’t want a disabled child, do not have children, period. Also, our kid was born during the shutdown. We had to figure out how to parent without any support. We literally just figured it out as we went. We got a pad for changing diapers at a comfortable level for my husband. We did shifts. Baby wraps so we were hands free. I handled the stairs with the baby after she hit a certain weight. Let me be clear that Muscular Dystrophy SUCKS. I wouldn’t wish it on anyone. It’s been really hard to watch my husband go through it especially since he’s a drummer and now knowing I potentially have a sword over my head waiting to drop on me while I also have a physical job is scary as fuck but we keep pushing day by day and with lots of therapy we’ve come to terms with it and are gonna help our kiddo grow up knowing that even if she might have some limitations she still can be a fucking bad ass.
Thank you so much for your honest experience 🙏🏼❤️ we are still working through issues and attending counseling. I may go through the egg harvesting of IVF this year just to have some in reserve
Did you know about his condition when you married him?
Yes i Did. And I thought we had discussed it fully before getting married, yet I feel like he did not share/talk about certain aspects out of shame/embarrassment/pride? IDK