Diagnosed in May 2017

[Niamh]

About 18 months ago my Dad started losing weight. He was eating normally but continued to lose weight alarmingly fast. Doctors thought it was down to a cyst on his liver so in December 2016 he underwent an operation to remove this cyst. When he came around after the aneasthetic He had developed a hoarsness and his voice was slurred. he also noticed that he would get violent coughing fits if a crumb went down the wrong way. We thought it was effects if the operation and would wear off but it didn't. He deteriorated rapidly after the operation continuing to lose weight until he was just 7.5 stone and finally hospitalised in May this year and it was during this hospitalization that he was diagnosed with MND. We have no idea what type of MND he has yet but are praying that it is slow progressing. He was given a ventilator to use at night and that has helped a lot with his energy and voice which is only sometimes slurred now and not hoarse at all however he has noticed a numbness to his fingertips and is unable to tie his shoelaces or open the door with a key. It's so upsetting to see him this way. On 4 occasions he has woken from sleep confused and disoriented not knowing why he is wearing the mask. After about 5 mins his memory returns it's always just after sleeping the doctors don't think it's connected to the mnd and think it's stress related. I'm so devastated and worried that he will have a fast Iprogressing form of MND. We will see some consultants on Wednesday and hiope that they can give us more info.

 

[Nikki J]

I am very sorry. I expect you will get much more information from the consultants. You have excellent MND doctors in Dublin including Dr Hardiman who is world known.

Looking at the top of the General discussion subforum for the sticky post about second opinions and start making a list ( if you have not already) and generally preparing so you can get the most from your appointment

 

[Niamh]

Thank you I will do that. Unfortunately Dr Hardiman is on holidays so we will not see her this week but hopefully we will get an appointment with her soon.

 

[soonerwife]

So sorry to hear about your dad's dx. You have found a great place for support. Feel free to ask questions or share info anytime.

 

[KateEmerson]

Hi Niamh, I'm sorry to hear about your Dads diagnosis and decline. You may want to ask the Doctor to do an ABG ( arterial blood gas ) which will tell if his CO2 ( carbon dioxide ) is too high. Confusion and disorientation can be symptoms of this and is not uncommon in ALS. Is he on oxygen? This can increase CO2 retention. Hope you get to see the MND doctor soon. Kate

 

[Niamh]

Thanks everyone for your kind words. Actually kate that would make sense about the co2 because my dad is already on a breathing machine to help clear the co2. The first 2 times the confusion happened was before he got this machine and the last 2 times was after the machine was down for 2 days. Hopefully the machine stays working properly and he doesn't have to go through that again because I think he was worried that he was going mad and it was very distressing for him. I really appreciate the insights and advice. .. We feel so lost at the moment it's good to speak to people who have been through it.

 

[lgelb]

Sorry to welcome you here, Niam. If your dad is waking up confused, the BiPAP settings may not be optimal for him. The need for flow changes in the five stages of sleep, and as MND progresses.

Knowing that you likely have already seen the consultants today, I would ask if he is on a volume control mode, and, if so, if the data shows it's in the sweet spot (not too high, not too low). If/as desired, I've helped some people here tweak the settings.

Best,
Laurie

 

[KateEmerson]

Your Dad is lucky to have you, you know what's going on, you pay attention to what's happening to him, and ask the questions. This approach will really help through this process. From personal expierence, I raise a flag in my mind when I hear it's from " stress" or " anxiety", I found that 99% of the time it had a physiological basis. Hope your appointments go well. Kate

 

[Niamh]

Thanks guys the co2 makes sense because since he went on the machine a month ago the confusion did stop. But last week the strap on the machine was broken so he was just kind of holding it on his face for 2 night's and it was after these 2 night's that he woke up confused. It hasnt happened since the machine was fixed. My Dad only wants my mother with him for this first appointment but I'm gonna tell my mam to ask them to check his co2 levels and to check the reading on the machine as It may need a little tweak. thanks so much for the support i think sometimes doctors just blame things on stress when they don't know the answer.

 

[Niamh]

So my dad went to the MND clinic today I was so nervous all day I was afraid it would be really upsetting for him but actually it was a positive experience. He saw Dr Hardiman which was fantastic she answered so many of his questions and gave him explanations as to why certain things are happening (e.g like the confusion in the morning due to the co2 levels) and they sorted him out with a wireless mask so that he can use it in the car on long drives or in case the electricity ever goes. It seems that my Dads MND is mostly localised to his respiratory system with only minor impact to his limbs for now... eventually he will lose the use of his limbs but they reckon we have a bit of time before that happens (Although they can't know for sure). They weighed him and he had put on a stone in the last month since using the breathing mask... that's a big thing as he has been constantly losing weight for the last 18 months and is worryingly thin so that was a little win (he's still only just over 8 stone). They also put him on The drug rizule to hopefully slow it... although They were very honest and told him it doesn't work for everyone. The fact that his respiratory system is so affected is still A big worry especially if he picked up a chest infection he might never recover from it so we habe to be so careful about who we leave into the house, he will need a walking aid soon as he cannot walk for any length of time without getting breathless and we know there are some tough times ahead but he came out of there feeling much happier than when he went in. And if he's happy we are happy so we will take that as a win.

 

[Nikki J]

I am glad it was a good visit. Glad too that the weight is coming back on with bipap. Getting his breathing sorted is so important on so many levels. If he is short of breath on minimal walking hopefully a power wheelchair will happen quickly so he can save his energy and still get out and about

 

[KateEmerson]

Happy to hear that your Dad had a good appointment and that you all have more piece of mind as to what's happening to him. It's great that he was able to see a great doctor in such a short amount of time. Kate

 

[Niamh]

Thanks guys. Is there some where on this site that I can read your stories?

Id love to hear from people who are living with ALS what things they found helpful... or if there are things that their family members did or said that was good or bad. I feel like I'm helpless and don't know what to say sometimes. Like I don't want to get upset in front of him but i don't him to feel like he cant talk about it either. Or I worry that we are fussing too much automatically opening yogurts for him for example when he can still do that himself it just takes a bit longer.

You guys have been through it so if you have any pointers that would be great.

 

[Nikki J]

Keeping open communication. Letting him tell you what he wants and needs. Mostly that you love him and will help him however he wants. Trite but true.

I am FALS. I found it worked with my sister when she could still do some things but it was hard to say will you let me do x? She would say but I can. I would say I know but I want you to save your energy so you can do y. X being something mundane, y being fun ot meaningful.

If you find a member whose story interests you if you look at statistics on their profile page you can see post or threads started by them. It only will let you see the 100 or 150 most recent so you can't see the beginning of those of us with lots of posts but you can see a lot

You can also search a topic on the forum or by subforum. You could also looks in a subforum for all posts in that subforum by a member if you wanted to try to go back farther than the statistics take you

Please continue to ask questions as well