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pickle

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Joined
Jul 17, 2008
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11
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Loved one DX
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UK
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London
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London
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

ps.Sorry - I posted this in the caregiver section but think maybe it should have been in the general discussion section. I don't know how to switch it so I thought I should post it here as well.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
HI Pickle, my situation is similar but not identical but i will help you where i can. My mom didnt want to go for tests when we realised something was wrong but i practically forced her to the hospital, when we got the results everything changed and she got really depressed, understandably, I really hadnt heard of mnd so even when the doctors said it to us i didnt understand, but my motheres reaction told me it was bad. I did feel a bit guilty about making her go, but one way or the other you need to know whats happening, so that you can get the help you need and also you can spend quality time together.
It does sound a bit like mnd with the hands and arms thats were my mams started, that was nearly a year ago and her talking eating and her voice are unchanged which is good, although her breathing is really bad. Her legs are getting a lot weaker and we use a wheelchair for distances but not all the time and she can still walk. My mums is moving really quickly she was diagnosed in Oct last year, she can do nothing with her arms or hands, legs are weak, and she is constanly choking coughing and she can lose her breath for up to 3 minutes when she chokes and this can turn into a panic attack (quite scary)
Good luck with the doctors, and let us know how you get on, at the moment there is not a whole lot you can do, until you get the results of the tests, and i wouldnt scare your dad too much until you know so best to carry on as normal i think for now.
speak soon
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
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?
Pickle

Hi, Pickle ... I'm so sorry you and your mom and dad are going through this. I don't have any advice about handling someone in denial, because I was the one in denial in my case . . . what finally broke through to me was getting the flat-out diagnosed from the neuro. When they had me backed into a corner, and the neurologist said there was nothing else it could possibly be. Even so, when the ALS rep came to my house and was talking about wheelchair access and things like that, I was thinking, "I'm not going to ever need anything like that!" It all takes a while to sink in with us stubborn types.

I surely, surely hope your dad doesn't have ALS, and will be sending good vibes your way.

The only real piece of advice I can offer is to take notes of everything the doctor tells you ... and try to get contact information for the neurologist, and get his permission to call or e-mail him later if you have questions ... because after you leave his/her office, you are going to have a million questions that you didn't think of while you were there.

About yawning: I have bulbar onset, and have been a big yawner for years, long before any symptoms started. However, others do experience it as a symptom of ALS.

Hang in there. Your dad is blessed to have you and your mom being so thoughtful and supportive. He needs you, and you're there for him!

BethU
 
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pickle

Member
Joined
Jul 17, 2008
Messages
11
Reason
Loved one DX
Country
UK
State
London
City
London
Wow, thank you so much for your advice. Mndireland - I'm so sorry to hear about your mother. It must be so difficult for you and I really appreciate you sharing your story with me. I am so hoping my Dad does not lose his voice too soon. He does sports commentating sometimes and he loves it so much and I was listening to him the other day and couldn't believe he may not be able to do it soon. But in another way, I know I have to be grateful that my father has had a wonderful life so far and really has lived every minute of it and enjoyed it. He is such a positive person and it is just heart breaking watching him try to be positive about this.

Beth - thank you so much for your advice. I guess my Dad is doing what you did and I think we just have to let him go through this process in a way that is best for him. I didn't realise that I could ask for permission to talk to or email the neuro privately so I will definitely do that.

One of my closest friends had a friend at Harvard Business School who was diagnosed with ALS in his twenties and he set up this amazing charity which tries to offer incentives for pharmaceutical companies to invest in research. I'm not sure if I am allowed to post the link but it is not trying to sell anything or give false hope so hopefully it will be ok.

I had one more question (sorry!) that I hope somebody could help me with... it seems from these forums that alot of people end up having to go to John Hopkins or Mayo to get an official diagnosis in the end. Why is this? I'm guessing it is because most neuros don't want to make an ALS diagnosis and the guys there are more willing to do so if they are sure. Is that about right?

Anyway, thank you so much and I will keep you updated on what happens at the neuro on Tuesday.

Pickle
 
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tmasters

Senior member
Joined
Feb 19, 2008
Messages
531
Reason
PALS
Diagnosis
08/2008
Country
US
State
California
City
Anaheim
pickle,

I don't know how it works in the UK, but at least in the US most general neurologists are not skilled enough in ALS to make a definitive diagnosis. It's too serious a disease, with too many mimic deases. In my case, a referral to UCLA to see an ALS specialist is where the diagnosed was finally given.

I tried the IVIG regimen, too, but it was ineffective and I was actually worse after 12 weeks of treatments. It was after this, and increased reflexes, that my diagnosed came.

I wish you well with your father. Keep him in denial (for now) if that's how he chooses to deal with it. But don't let it keep you from asking questions from the neurologist or getting him help. And remember, your mother needs help, too, and has a right to grieve in her way.

Keep the faith,
Tom
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Diagnosis
0/0000
Country
UK
City
London
Pickle Hi
I wonder how you're doing now? Not heard from you for ages. Thinking about you.
Dx
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Pickle,

Your dad will not stay in denial for very long if indeed he has ALS. Sooner or later, the reality will set in when he notices all of the physical changes that are taking place in his body. At that time, he will have to deal with it. Decissions will have to made and ultimately, he is the one that will have to make them.

For now, let him think what he may. In time, he will face the truth.

I'm very sorry for your situation but you dad is fortunate to have you there!

Zaphoon
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Hi Pickle I did PM you with my email address and I am sure I sent you an email anyway...please get in touch. If you want to go to an ALS clinic in london as your gp for a referall to Barts and see Malaspina...he is lovely (italian, but has been in England for 20 years, so his english is very good) the clinic is part funded by the MND association. Even though I had my DX early this year, I am often in denial that it will affect me...helps me to work at beating it...I can cope then....other days when it gets me I am in floods of tears...only to be expected I suppose...especially when I see my lovely small grandchildren and have the realisation that I most likely wont see them grow into teenagers...and I really HATE it that I cannot read or sing to them any more...can only just manage to talk to them a little. Please email me again...jennifer
 
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