Status
Not open for further replies.

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Country
UK
State
Hertfordshire
City
St Albans
Hi I'm new to this. We have familial MND in our family. 3 of my Dad's brothers and sisters died from MND/ALS so we know how bad it can be. I'm looking for any helpful or positive suggestions, anything at all.

I'm mostly concerned for my Dad now who may have MND himself and is having tests in a specialist neurological centre in Birmingham, England. My Dad's symptoms are a mixture of typical and not so typical. Please stick with me while I try to describe them:

Dad has a lot of difficulty with speech. He did have a mild stroke 2 years ago, which had a small effect on speech. Over the past year his speech has deteriorated to a point where he is hard to understand unless you know him and both he and us have to try really hard.

Swallowing is becoming more difficult and Dad has lost a lot of use in his tongue.

My Mum has developed an amazing nutritious and tasty menu for him that is easy to swallow.

So far, MND symptoms, right?

Other things: Well Dad is, I'm very proud to say quite active and strives to do things and be independent. Dad has no problems with his limbs. Dad walks, shops, gardens and even had a go at football with my son this weekend. Dad is very brave about the speech problems and still goes shopping on his own and just writes things down if they do not understand him.

Dad has also had a lot of chest discomfort for about 10 years, which doctors have really failed to give a diagnosis to. Maybe this is something separate to ALS does anyone else get chest discomfort? Dad has always worked hard and hardly every had a day off work sick, but sometimes the chest pain floors him.

Dad does not have tremors in his limbs although he is slower than he used to be.

Does this sound like MND given that he is active and is limbs are not obviously affected? I know the speech, swallowing and tongue problems do seem like MND.

Please any advice would be much appreciated.

Wishing everyone on this forum love and support.
Dee
 

siuska

Active member
Joined
Jan 11, 2008
Messages
78
Reason
Learn about ALS
Country
US
State
michigan
City
detroit
Dee,
i am not sure how GB's medical system is set up but if there is a Motor Neurone Disease special clinic, i would be getting your Dad to one...if i remember right, gene SOD1 is responsible for some familial ALS. i know inheriting it is 50/50...but, this disease is so tricky...it's just so hard to say or deduct how/when one gets it or not when it runs in families. You might try reading up on it, but Dad probably needs to be checked out if for no other reason than peace of mind.
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Country
UK
State
Hertfordshire
City
St Albans
Thanks for your reply Dad now diagnosed with ALS we're all sticking together as a family have now done loads of research kind of a relief in a funny way to know after all the speculation. Tho' I really knew he had ALS from last July. In one respect we have good news in our family it seems to be late onset with average age of diagnosis being 70 odd years. Neuro also says our DNA could be helpful in terms of research that explores delaying onset of ALS in the dim and distant future.
Best
D
 
Status
Not open for further replies.
Top