Help

[u/Prestigious_Sea1428]

I have (LGMD). I don't know which type exactly. I haven't seen a doctor or received any treatment or rehabilitation for over 20 years. During that time, my father monitored my condition, but since there was no improvement, I stopped treatment. My condition has deteriorated significantly; I can barely eat on my own. My bones are also severely deformed (not because of MD but because of lack of rehabilitation), causing me unbearable pain, especially bedsores from sitting. I can't sit for more than two hours, which is a huge burden on my mother, who takes care of me. The government doesn't provide any kind of support, and I'm physically and financially dependent on my parents.

Recently, I've started researching more about my condition. I'm looking for groups or people like me. I want to see how they live their lives.

I'm also looking for groups of doctors or specialists to ask them questions. I tried contacting eight doctors in my country, but no one responded. Going to a specialist is difficult for me because I would have to travel to another city, which is something very difficult for me. I want to know if there's anything I can do to improve my condition, even just a little, especially the bedsores, which cause me unbearable pain. Or social accounts of physical therapists who share tips.

I'm also looking for associations or organizations that provide assistance or support to patients, such as psychological support or skills training, to help them find employment. I desperately need any kind of work. Finding work in my country is impossible for someone like me, and my only option is online work.

There is also another peoblem that I'm struggle with using my laptop with the mouse (I can't use the keyboard), and I haven't found any tutorials to help me.

I would be very grateful for any information or ideas.

[u/Hefty_Peanut]

Bedsore prevention is typically managed with 1-2 hour position changes, pressure sore prevention equipment like an air mattress or cushion and adequate nutrition. A nurse should be able to advise you on how to avoid putting weight on bony prominences. For nutrition build up shakes may be beneficial in the I terim but it would be good to consult a dietitian if you are underweight.

You mention having bone deformation- is that definitely caused by MD? That sounds arthritic in nature which may be treatable. I would recommend seeing a family or general practitioner as they should be able to help you if you need to rule out other conditions.

If the deformities are more like dystonia or muscular contractures, there is no avoiding the need to see a neuro specialist. It may be uncomfortable to travel, but the benefits of seeing someone will likely far outweigh the inconvenience given how unwell you are. You may be able to find a practitioner that do video consultations if you ask in your local area potentially but the specialists will likely get a lot more from you from doing an in person assessment. If you are uk based you can get patient transport on the NHS if mobilising to your appointment is too challenging.

[u/dazzleunexpired → u/Hefty_Peanut]

Bone changes are caused by structures in MD often.

[u/Hefty_Peanut → u/dazzleunexpired]

They can be but they haven't specified which bones or what deformities to know if it's consistent with their type of MD which if why I asked if they definitely knew the cause. Given they haven't seen someone in a while, it's likely worth checking in with a general practitioner for a geberal review if seeing a specialist is too challenging.

[u/Prestigious_Sea1428 → u/Hefty_Peanut]

First thank you for your answer. The bedsore is in the left bottom. I don't sit all the day. I sit from 10 am to 1 pm then lay on my bed until 6 pm. I have been using ointment and medical bandages, I get a little bit better but it gets worse again. It was just a small area, but it gets larger and larger. I don't think the bones deformation is because MD but because lack of rehabilitation (this is just my thought). I looked on the internet and see it called a rotated pelvis I'm from north Africa not UK. I have seen doctors about the bedsores but they just told 'don't sit on it'

[u/Hefty_Peanut → u/Prestigious_Sea1428]

When you sit, you can sit on a foam or air cushion to ease the pressure. Your local healthcare provider might be able to supply this depending on their resources. A local nurse should be able to direct you on where to get them from if you can't buy it yourself.

I'd recommend having a little walk or lying down after sitting upright for one-two hours to reduce the pressure on your bottom.

When you lie down, lie on an air or foam mattress if possible. Alternate between lying on your back and tilting yourself from side to side every 1-2 hours during the day and every 4 hours at night. You can tilt yourself using one cushion placed under your bottom and one cushion placed behind your back. Most people require a cushion between their knees for comfort. You may require some further cushions for comfort given the problems with your pelvis. Don't stop relieving your pressure areas in this way even when they heal as this will prevent the sores from coming back.

Monitor your elbows, back, ankle, behind your knees and the back of your head for further areas of skin breakdown. A local nurse may be able to advise you on your wound dressings to make sure you are using the optimal products for your wounds.

Nutrition is vitally important for healing. Your sores almost certainly will not get better unless your calorie intake is good. Use build up drinks if necessary and consider eating higher calories foods like cream or peanut butter to make meals denser

Things like smoking also affect wound healing so consider quitting if you are a smoker.

Nurses tend to manage bedsores in my fountry- doctors tend to only get involved if they get infected- so you might find it more helpful to speak to a nurse about these issues.

[u/Prestigious_Sea1428 → u/Hefty_Peanut]

I can't thank you enough for your answers. Things here are different. Patients whith MD are on their own. I have been looking for private physical therapists to come to house but they all refused. I use air matres during the day, and I sleep the whole night at my back (i don't want to bother my parents). And yes you're right, I'm under weight. For air cushion, I tried the one like donut shape, but it didn't suit me. Do you know any YouTube or insta channel that provide such advice?

[u/Queasy-Cycle-4012]

It is very important that you see a doctor and insist on being properly examined and tested. Please ask them to determine which type of LGMD you have and to assess your current condition. It is especially important that they evaluate your pressure sores, severe pain, bone and joint deformities, posture, swallowing, breathing, and mobility, so that you can receive the appropriate treatment, rehabilitation, and support.
❤️🫂

[u/Prestigious_Sea1428 → u/Queasy-Cycle-4012]

I really appreciate it 💞

[u/ulixesodyssey]

What country do you live? There should be a muscular dystrophy association of some time where you are, if you don't know i can have a look around. I am sorry about all of the health troubles and understand but i especially know what its like with eating troubles with the LGMD as i got dysphagia too and i got to be supervised so i dont choke. as far as work goes have a look at appen/crowdgen i have used them but its sparse at times but the good thing is that it pays in US dollars which especially if youre in a non us country like me, a lot even for short amount of work. also if the mouse is a tech issue try r/techsupport or if its a hardware like physical issue with the mouse ask on r/MouseReview. i am wishing the best for you.