Hello I am new today

[debbieo'mahoney]

Two years ago my dad was diagnosed with MND - he has deteriorated in the last six months but his chin is still up - any positive advice would be grateful.:-D

 

[Al]

Just keep being there for him. If you have any questions just jump in and ask. Welcome but sorry you have to be here. We're a pretty informal group here so don't be shy. AL.

 

[debbieo'mahoney]

hello nice to hear from you - would like to hear your experiences. Am trying to be brave for mum and dad but getting harder. Are you a sufferer if so do you get the emotional breakdowns, i.e. crying or laughing without warning! or have you heard of it?

 

[gilly]

sorry

hi there.

also sorry you have to be here but the group on this forum is quite an amazing bunch. my aunt has ALS and it seems that it is common from time to time to have those emotional outbursts. i have read about them too. how confusing for you and most likely frustrating for the sufferer.

best advice i can give you is a repeat of what al said in his posting. just be there for your father. it's a very difficult disease to face but, my god, how lucky so many of us are to have such wonderful family and friends. to know that you are not and never will be alone at this time is a very big deal, i would imagine. i live very far from my aunt but i call her every day and i send her tons of emails and i have flown out to see her as much as i can. she has wonderful friends and a big family. i feel so thankful for that - knowing she is loved and cared for at this time.

the other advice i can give is to try your best to keep life going. try to get your dad doing things that he enjoys. or seeing / experiencing new things. this ALS can really get you down and realizing that life goes on WITH ALS makes a huge difference in someone's attitude toward each day. i have been sending my aunt hockey tickets (she's a huge hockey fan) and restaurant gift certificates etc. if i was there, i'd take her out myself. it keeps her mind on the fact that she's got lots to live for.

hope this helps. nicole

 

[debbieo'mahoney]

Thanks for your reply! I am lucky in as much I am just round the corner from my dad so I can pop round and see him when I want to. All his life he has been a fanatical West Ham Soccer Fan (Living in London) and has had season ticket for as long as I can remember. This year is the first year he has not wanted to go (confidence I think) I just wish we could persuade him to go again - it is the one thing he loves! Is there any reading material that your aunt has read that spurred her on do you think?

 

[Al]

Hi debbie. I have ALS but do not get the emotional outbursts as they call them. I believe the medical term is emotional lability and assume they would call it the same over there even though they call ALS, MND there. Is there anyone special that your dad used to go with? You could try to get them to go together for old times sake. AL.

 

[vicky]

Hello, new member NEED HELP

Hello to everybody,

It is not my first visit on this forum, but my first post.
I have never heard about als until January 2006. But at the moment I feel that it is a very terrible disease for the patients and family members, friends too.

My father's symptoms (53 years old) began at the end of 2004, there was a little problem with his speech and swallowing. He got a diagnosis in Nov. 2004 GERD, this is the reflux disease, he got medicines and everything was fine. In 2005 September he find weakness in his right hand, it is very hard him to write, button the shirt. He can not touch his little finger with this thumb. He had EKG, CT, MRI, MRA , the results:

• arachnoid cyst,
• small periferic ischaemic laesio on the left side of the brain,
• spondylosis, spondylarthrosis cerv. Polydiscopathy cerv.
• Discus hernia between the C5/6
• chronic vascular encephalopathy,
• acut vascularis ischaemic laesio.
• Our neurologist thought that the problem is bulbar als and ordered an EMG, ENG. They examined my fathers legs and arms only. I try to translate the result of it:

Diffuse, axonal damage on the motor neurones, NCV normal. Sensoric potencials is keeped either in amplitude or in velocities. On the right m.op.poll. (the place between the thumb and forefinger) there are continuously rest activity with fasciculations and positive sharp waves.The regeneration capacity is working on this place. For maximum contraction there was intermediate reduction on some needle positions, elsewhere isolated action potencials. The average action potencial duration: +39%.

Summary: Motor denervation with gravis motor axonalic neuropathy. Considering the the sympthom, the electrophisiology changes match to the MND.

They said it is ALS. We asked them to do Lyme, immun examination, spinal tap too, but everything were negative. The problem is that in Hungary there is not any ALS clinic, and our population is 10 million, but we have less the 100 people in the country with this terrible disease.

We went to another doctor who made an MRI+MRA again and found something wrong with my father arteries: vertebral abnormality (on the left side), which go along next to the brain sterm and touched and maybe pressed the medulla oblongata. Therefore they made a surgery in March and solved this problem with the basilaris and vertebralis arteries. The doctor said that this can caused the symptoms. We had to made the surgery because my father could be disabled. But after the surgery he falled 4 times , once in April, May, June, July. No falls since then, he can walk, drive but much more slower than in the past. We will visit this doctor in October for an update.

We try to think that it is not ALS and sympthoms caused that abnormality in his brain. An other neurologist (who is dealing with homeopathy as well) said that he did not think it is ALS, he ordered an SPECT examination. There can be seen an abnormal place on this record next to the brain sterm and cerebellum, which means that the blood circulation is not good on these places and it can affect every parts of the body.

He has problem with his legs (it is difficult for him to start) , arms (when it is cold his hand are very cold and hardly moving), swallowing (but not every day), cleans his throat and blow his nose when he eat, he has pain in his waist, and he has fasciculations all over his body, mainly in arms and legs.
But he can shave, eat, bath and dress on his own. But he has not work for a year now and he will be a pensioner from Tuesday.
I browse the internet every day, but I can not decide what can be his problem. If he has ALS, what type has he, bulbar or limb onset?

Thanks for reading our story and help for us to see what can we do, every suggestion and advice is necessary.

I pray for every evening to find a cure for this terrible ……

Vicky
28 years old – the only daughter for my daddy

P.S. I am from Hungary, from Europe, hoping you can understand me, but my English is not perfect.

 

[Al]

Hi Vicky. Sorry about your father. I can understand your English so do not worry. It is very difficult to say whether your dad has bulbar or limb onset ALS. If you are getting fasciculations in a muscle the muscle is not atrophied yet. There may be some starting but dead muscle will not jump. As long as you have fasciculations it is a good sign as far as I am concerned. It sounds like he has had all the tests that are usually given and you may just have to wait to see if it gets worse before they can give you a definite diagnosis. Take care. AL.

 

[janf]

laughter and crying

Hi debbie I'm new here. 53 year old female . 2 diag. ALS going to Atlanta Ga.Emory ALS clinic. For yet another Diag. This one scares me because they know what's up. Yes, to answer your question I have laughter, crying spells. I start laughing can't stop. Then I start crying If i'm standing i can't move. How crazy is this mess.? But, sometimes the laughter is good, but can be embrassing. I try to think about something that really makes me angry then it goes away. bless you janf