Myotonic Muscular Dystrophy

[Helen]

I have been caring full time for my husband for three and a half years. He is 54 years old and was diagnosed with Myotonic Muscular Dystrophy when he was 28, two years after we got married, gradually losing muscle strength and mobility over the years while developing the cognitive aspects of this condition. I read recently that it affects 1 in 8000 people. I felt isolated enough without knowing that. Does anyone else here care for a loved one with Myotonic Muscular Dystrophy?

[no1mum]

Isolation and caring can go hand in hand.
http://www.mda.org/disease/myotonic-mus ... y/overview I'm not sure if this link will help in any way.

[Eun]

Hi Helen not got myotonic dystrophy but I am a manifesting carrier of Duchenne Muscular Dystrophy and my son has Duchenne Muscular Dystrophy and is aged 30.

Eun

[Helen]

Thanks for replying Eun and no1mum.

I found the link really interesting. My husband has every symptom now. The latest is painful constipation which I see is caused by a weakness in his gastro intestinal muscles.

Did your son show symptoms from a very early age Eun? I hope he is keeping well.

I have started volunteering at our local cat rescue one morning a week. We pay for a carer to come in and help my husband on that morning so
I can leave him in bed and the paid carer helps him get up and makes his breakfast then when I come home I make his lunch. It has been so good for me. I have also started researching my family tree and my elderly Aunt who is my only surviving family and I are both fascinated by all the discoveries. I think it is so important to have your own interests even just snatches of them whenever you can.

[bowlingbun]

Hi Helen, Welcome to the forum. When I was disabled, family history research always gave me something to think about or do, a real life saver.
Has your husband had a recent Needs Assessment from Social Services, and a Needs Assessment for you?

[Eun]

Hi Helen Robert was aged 6 when he was diagnosed and I was diagnosed 4 months after him. They used to just put my falls etc down to my thalidomide damage but it was more than that - I turned out be a spontaneous mutation meaning that I am where the DMD started in our family. Rob is now 30 and has graduated from University with a 2:1 Honours degree. He uses a ventilator 24/7 to breathe and is a full time powered wheelchair user. He loves clubbing and going out for meals and to the cinema with his mates (both able bodied and disabled). He was also voted Campaigner of the Year by MD UK for his work in raising awareness of the lack of palliative care respite for his age group. I myself have just been diagnosed with severe osteoporosis and I use a mobility scooter and sometimes a rollator. I too like cats but I am severely allergic to them.

Eun

[Jayne_2104]

Hi there,

I can see this is an old post but hoping you still are using this board.

My husband also has Myotonic Dystrophy x

[StillBelieving]

I care for my 36 year old daughter who has Congenital Myotonic Muscular Dystrophy, Type 1 Diabetes and Autism.

[bowlingbun]

Welcome to the forum.
Are on getting enough support?