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pickle

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Hello to all of you, I have been reading all your posts for a while now and posted myself about a month ago about my Dad who was developing several MND symptoms. Unfortunately it is looking increasingly like MND - they have eliminated pretty much everything else now through EMGs, blood tests etc. They tried him on IVIG in the hope that it was MMN, even though nothing showed up for it in his bloodwork and they didn't find any conduction block in his EMGs. Unfortunately, the IVIG (finished 3 weeks ago) has not made any difference and he has gotten worse rather than better over the last few weeks - his neuro is quite shocked at how quickly it is progressing. I just had a couple of questions I wondered whether any of you could help me with. Firstly, we have an appointment with the neuro on Tuesday to assess his progress - I guess I want to make sure I ask all of the right questions - is there anything I should be asking in particular? It is difficult in front of my Dad because he is going through this phase of refusing to believe there is anything wrong with him. In a way I feel like I should let him be in his denial if that is what he needs to do and I don't want to ask the neuro anything that will result in an answer that make my Dad sad, but at the same time I want to know everything I can about what is going on. Has anyone else been through a similar situation?

Its difficult to know how to handle talking to him at the moment and whether we should talk about it at all or just pretend it is not happening when we are together which seems to be what he wants us to do. It is so difficult for my Mum because she has to pretend everything is great and happy and go along with him when he talks about his plans for the future and then every time she is alone she calls me and just breaks down. I'm very worried about her as she is trying to hold everything together but she is so worried she can't eat and she is so upset because she has always shared everything with my Dad the whole 30 years they have been married and now she has to hide her feelings from him (as do I). Any advice on how to deal with this would be so appreciated.

Just one more question - at the moment my Dad's limbs are affected (no use of his right hand, very little strength in right arm, left arm going, constant fasciculations in legs and ankles, dragging his feet and 14 pound weight loss). He has, however started yawning excessively. I notice on Patients Like Me that this is a symptom of MND but I wondered whether this is associated with bulbar onset? Basically I am terrified it means his voice will start going soon and I would really appreciate some honest advice about this - don't worry I can take it!

Anyway, I'm sorry for going on for so long - I have a habit of doing that! I would so appreciate any advice you have.

Best wishes to all of you and thank you for all your help and support so far. This is an amazing community of wonderful people.

Pickle
 

CindyM

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Hi Pickle- I was wondering how your Dad is doing. Sorry to hear he is progressing. I don't know about the yawning thing. A lot of PALS mention it but I don't recall reading why this is so. Maybe some of our PALS will have an idea...Cindy
 

pickle

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Thank you Cindy for your post - I just reposted my post in the general discussion section as I didn't mean to post it in the caregiver section. I feel guilty to have posted it here where so many people are going through so much worse than me and dealing with much bigger problems.

Sorry for any confusion

Pickle
 

brooksea

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Pickle,

Please! No apologies! You are a caregiver yourself. It would be natural to post here. Besides we are one big happy family! If Al or Cindy felt the post would be better served on another forum they would move it for you!

As to the yawning, that was one of the 1st symptoms my husband had. He is bulbar onset. Can't tell you about your dad's progression rate, since everyone is different. There is no rhyme or reason it seems. I can tell you that low dose lithium has eliminated the yawning and the terrible cramping in his neck, along with the spasms in his body and limbs.

You dad is likely in shock. Give him time. But at the appointment you will need to be frank if you want answers from the doc. I think your dad knows more than you think he does.

Good luck!
 

paula-jane

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Pickle,

I agree with Jimercat, your father is more than likely holding it together because that is what a parent does. He probably feels that it is his job to shield those closest to him from pain and heartache. It's a totally natural response... in any family. I think he probably is more aware of things than he lets on. It would be okay to let him know that you have done some reading and research on ALS and that if he ever wants to talk about anything, it would be safe for him to confide in you. It is also okay to acknowledge the truth about ALS and that there is no cure. Perhaps, in time that will make it easier for him to open up to you about his choices and decisions. ALS is a very personal disease that takes everyone along for the journey. It is horrible and very unfair and yet, most of us who have been blessed to care for our loved ones know that our lives are enriched for the life lessons and the time we have with them. The most important thing is to be informed about ALS... so ask those doctors everything. This is your opportunity to learn about the path ahead. Find out what path they think he may be heading on and what lies ahead in the near future, med wise and equipment wise. My only advice is to be proactive. The reality is that ALS is a disease on a linear path, meaning it goes only one way, it does not suddenly turn around (although it may plateau for periods of time) it does not get better. Try to anticipate the next move and make it now. If you feel your father needs certain equipment in the near future, start researching and asking for it now. Do not wait until he needs it as it will be too difficult to get it for him.

As for an honest response... ALS progresses differently in each person. Generally, limb onset.. means just that.. it starts in the limbs, then moves to swallowing and speech and then internal.. the respiratory system. Bulbar onset means that it affects the motor neurons involved with the muscles needed for swallowing and speech first. The life span can be shorter with bulbar onset. Everyone is different and these are questions you can ask at your appointment.

Having said that, give him time to sort out things for himself. Everyone comes around on their own time and in their own way. Maybe it's important to him to be strong while he is able to do that. Remember, the only control your father will have with this disease is his brain.. his pride and his dignity... his integrity... these are very vital parts of every human and they must be respected and retained. It's his disease at the end of the day.

Your mom, yourself and your family will need time to sort out and deal with your own feelings. The most important thing to remember as a caregiver is to have some breaks away from ALS. Yes, as guilty as that sounds it is a very important aspect of coping. We are not superheros and there is no glory in injuring yourself or exhausting yourself as that hurts you and your family. You will need to find your own support away from your father.

Gosh, this is lengthy... sorry.

Paula.
 
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