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AnnieC

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Jul 17, 2013
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4
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Loved one DX
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IRE
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Ireland
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Cork
Hi there,

In April 2012 at the age of 62 my fathers speech became impaired, he started to slur his words and blamed it on needing new dentures. It seemed like it happened overnight and sounded like he'd had a stroke but he was adament everything was fine and just needed new teeth. We went through the process of getting dad new teeth but his speech didn't improve. We are over one year on now and have gone from bad to worse. It is practically impossible to understand my father now, even those closest to him have to ask him to repeat on numerous occasions, he can't keep liquids down, his breathing has started to get raspy and we have had a few near choking incidents. We have been through 15 months of tests from throat cancer, brain scans, metal poisoning, changes to his diabetic medicine, swallow tests, MRI's and are due to have the EMG in a few weeks. My dad has started to stoop, lost a lot of weight, can't grip tricky things with his hands and seems to have a bit of a flat foot/thud when walking now a days, he would generally be a very fit man be he keeps to himself and even when he could speak wouldn't say much in regards to his feelings - he is pretty old school :smile:

Our GP has told us he thinks it is MND but when we went to the neurologist yesterday for our final confirmation he didn't actually give us the diagnosis. He alluded to MND on several occasions but never actually said the words and this is because he wants the EMG test first. He seemed happy with dad's physical well being which gives me hope but told us he was going to mention the 'potential diagnosis' in a letter to our GP which he would send out straight away. We rang the GP afterwards to update him as we were very confused and the GP asked if we had a plan in place for dad and if we had a 'rota' to ensure someone is with him always? We are really confused now as we feel our dad is slowly slipping away and we should start now to make plans and see all the things he wants to see before he is physically unable but have been putting this off until we had a firm diagnosis and don't want to scare my dad if MND is not the diagnosis.

We have never had experience with MND in our family, extended family or friend base so I guess my question is - (finally I hear you say :smile:)
Do you think the above are symptoms of MND? Have any of you ever experienced a person going through them which resulted in a diagnosis of MND and if so, based on the above do you have any general timings for when my dad may lose his ability to walk without aid?

I am so sorry to flood you guys with all this but we are completely confused and my dad is so frightened! Any insight you could give would be great?
 
I am so sorry for what you are going through. This is a difficult time and until the EMG is done you are in a sort of limbo His symptoms do sound very worrying which is why your GP is trying to prepare you
There is no timeline for MND as each PALS ( person with ALS) is different. If this is MND it sounds like your dad would be bulbar onset ( speech and swallowing). Some of these people do not lose their limb use before the end ( weak breathing muscles being the cause for most PALS). You need to make plans if you get a dia gnosis but you also need to take one day at a time and enjoy whatever time is given ( as we all should)

Please keep us posted and you will be in my thoughts
Nikki
 
try to stay calm until the EMG, and if it is positive, move forward with getting him involved in an ALS clinic or a neuro who has ALS expertise. they can help with the equipment needs. I remember when we were first diagnosed and I had no idea where to turn for help because our neuro was not an ALS specialist.
 
Thank you both so much Nikki and Barbie - really comforting and practical advice x
 
Hi all,

My dad went to the speech therapist yesterday, she was really great, spent about 2 hours with dad and her manner was fantastic. Unfortunatley she confirmed his tongue twitching and also saw it in his arms. She thought dad had a really dry mouth even though he drools a lot when drinking or just afterwards and she confirmed dad had a lot of phlem in his chest that he just can't clear. She said a stranger could understand about 50% of what dad says which is great as I thought it would be a lot less. The speech therapist talked a lot to dad about how he was feeling which is good as dad isn't the best when it comes to that :smile:

She wants to wait for the EMG results before deciding the treatment path for dad, if it is ALS she will support him through muscle fatigue and help him to use an IPAD with apps for comunicating, if not, she will start working on exercises. Fingers crossed the EMG test will come soon, I rang the consultants rooms last week but they are only there two days a week, Monday and Wednesday, hopefully we will get a call on Monday to confirm an appointment! Just thought I would give you an updates :)
 
Sorry he and you are going through this.... People on here are great in helping others deal with issues, whether a family member or a person with a MND.
Your father's timeline is a lot like mine. It turned out I am bulbar onset ALS...but it could have been a number of other things too.
The testing phase seems to last forever.

Just try and stay positive for your Dad, I know easy to say. My biggest allies have been family and friends staying strong to help me stay strong!

Good luck and keep in touch with us.
 
Please stay with us, Annie. Regardless of your Dad's final diagnosis, there are hundreds of helpful souls on the forum who selfishly provide invaluable insight and assistance. God Bless.
 
Hi Jellis86 & Frankb,

Thank you both very much for your posts, it is really comforting to get e-mails like both of yours, makes me feel support is out there!

Hi Jellis86,

I hope you don't mind me asking but how long did it take for you to get diagnosed and how far have your symptoms progressed? This is just the first time I have come in contact with another person with a similar story to my dad.

XXAnne Marie
 
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