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Any parents with Muscular Dystrophy or similar?

(8 Posts)
user1500491600 Thu 20-Jul-17 21:21:57

Hi. I'm new and it's my first post, I was hoping to find someone in a similar situation or who's "been there,done that" who could give me some advice?

I have emery dreifuss muscular dystrophy (50:50 chance of passing on to a child) and as such my husband and I are just about to embark on our first round of PGD IVF.

Although I want a child more than anything I am worried about my ability to cope when my other half isn't around due to my physical ailments. I have bad weakness in arms and wrists so lifting is an issue and I walk but with a stick and struggle severely with steps. I anticipate I'll probably need to use a wheelchair in the latter stages of pregnancy if I'm lucky to fall.

I was wondering if anyone is a parent with similar issues and if so how you cope/ if you've found specific equipment that helps?

Thanks in advance!

Hoppy85 Sun 03-Sep-17 18:23:08

This was me. I've since changed my user name. Is there no one?

Danni93 Mon 02-Oct-17 08:10:15

Hi, im a mother of a perfect littly boy i have cerebral palsy and what iv found being a parent is what i lack in the physical side i make up in emotional aspect. I know im a great mum but my cp slows me down i try my best but i have to keep the seed thst im doing things or how much im doing in mind.My little boy knows mummy has tremours and he helps me, your not on your own. Hope this helps X smile

Danni93 Mon 02-Oct-17 12:51:31

keep in mind

Hoppy85 Fri 06-Oct-17 20:26:05

Thank you! It would be good to have someone to bounce off and it's good to hear you manage in your own way.

I do worry about how I will cope physically (I won't be able to bend down and pick a child up, for example, or carry them around like the average person).

Danni93 Sat 07-Oct-17 08:45:03

There's loads of people that can help family nurses etc, you adapt with your disability and being a mum.When i first became a mum i was abit unsure what they would be like because i was disabled and had a baby but they were brilliant!! i once watched a documentary on disabled mums and one women uses to pick her baby up by her teeth....now thats incredible rhe human body's incredible....but my advice is especially with a disability....sleep when the baby sleeps if you got housework to do just put he or she in a bouncer.. 😊
X

Danni93 Sat 07-Oct-17 08:48:00

Uses her teeth to pick up the baby* just thought id correct myself😅

Hoppy85 Mon 06-Nov-17 21:10:27

Her teeth? That is incredible! Yes I know there are some things I will struggle with more than others. I'm hoping I'll just find my "own way" of doing things. I'm pretty apprehensive about the thought of needing to things in a different way in public though? I know some people are great but there are also those that are really judgemental?

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