August 23, 2020 at 11:52 am #189183Reply To: I’m scared
Hello Tara. I am so sorry that you have found us under these circumstances. I am sure that there are others on here who have been in similar circumstances, and they will reply in due course. Please may I suggest you seek medical help, if possible from your neurologist. This seems to be something which needs to be looked at quickly if the deterioration is coming on quickly.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015August 25, 2020 at 5:29 pm #189219Reply To: I’m scared
I’m not a parent but am using my vent almost full time due to my gastro intestinal complications which cause extreme fatigue and breathlessness. In the not to distant future it is likely that I will need to transition to PEG feeding.
Don’t know if you’ve heard of this group Pathfinders neuro muscular Alliance (formerly DMD pathfinders) You might be able to connect with other parents via them. https://dmdpathfinders.org.uk/dmd-pathfinders-is-changing/ also on facebook
Sorry I cant add much but sending massive hugs.
CatCatModeratorPosts: 1,002Joined: 20/09/2010August 29, 2020 at 2:57 pm #189358Reply To: I’m scared
Is it Duchenne your son has. I admin Duchenne Parents Zone – a Facebook support group specifically for parents of those with Duchenne in the UK & Ireland. If you’re on Facebook and have a child with Duchenne you’re more than welcome to join us xKatRParticipantPosts: 0Joined: 04/07/2019
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