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Thread: Sisters with Dad recently diagnosed

  1. #1
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    Sisters with Dad recently diagnosed

    Hi there,

    We have just come across this forum whilst researching MND. Our dad was diagnosed last week and it has come as a very big shock (as Im sure it does with everyone!)

    We are just looking to see what we can do to help, he is still walking but slowly getting worse. He has been tested for everything, the last tests were suspected MS and then MND was the final diagnosis. We have gone through the motions of him being very upset but this week he is trying to be positive. He has done everything through private doctors so far and he is now going to see Dr Richard Orrell for further checks and tests (in a couple of weeks) to make sure the diagnosis is correct (obviously clutching at straws but worth a try!)

    I guess we are just in the realm of the unknown, he can still walk but hobbles....how long till he cannot walk? Will he continue to be able to drive? How quickly does deterioration happen?? He is in his mid 50's and I physical guess symptoms have been showing for about a year since 1st falling over. He is struggling to use his arms too but he is seeing a physiotherapist 3/4 times per week which is costing a fortune but it makes him feel better so whatever he has to do I guess!!

    This forum has been great to browse through so we thought we would join and hopefully get a lot out of it. My dad isnt one to come on things like this, he isnt technically savvy but we have seeked out local MND meet ups but we will wait to ask him about those until his appointment with Dr Orrell so we shall see how that goes.

    Thank you!

  2. #2
    Forum Member Barry52's Avatar
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    Hi and welcome sisters,

    No one can tell you what to expect as your dad moves forward with this illness as there are no typical symptoms or rate of progression. The fact that he is showing positive signs is good as that is a great approach. You mention falling and it is important that he uses stability aids such as a stick, crutch or rollator. Broken bones are not what you need with MND.

    Please ask any questions of the forum family and we will try to support you and your dad on the journey with MND.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  3. #3
    Forum Member WendyWooG's Avatar
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    Hi
    So sorry to have to welcome you here.
    We all progress at different rates so it's very difficult to judge timescales.

    What I will say is be very careful of physical therapy, make sure he is with someone who understands mnd, keeping flexibility and range of motion is very good for us but overworking muscles can in some cases be very bad. It's important not to cause damage to weakened muscles as that can speed progression. My physio is part of the neuro centre she is very firm with me that I don't overdo things.

    Ask us any questions you like, we will all try to help

    Wendy

  4. #4
    Forum Member ccinjersey's Avatar
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    Welcome SIsters

    Sorry for your Dad's diagnosis. You will gain lots of support, advice, and knowledge from joining this forum by people that understand what you, your Dad, and family are all experiencing. Wishing your family the best in the days ahead.

    CCxx
    May God grant you always.. a sunbeam to warm you, a moonbeam to charm you, a sheltering Angel so nothing can harm you, Laughter to cheer you, Faithful friends near you, and whenever you pray Heaven to hear you -

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    Thank you all for your responses. I have mentioned crutches to him already but he just laughed it off, I'm not sure he is quite ready to accept that yet. He runs a very large business with over 30 employees and they do not know yet, he is waiting for this appointment with the consultant before he gets any balls rolling with what to do with his business.

    Wendy that is very interesting about the physio, he does say he works him very hard which is now worrying me. I don't think he is any sort of MND specialist as he was seeing him before his diagnosis so I will tell him this immediately.

    I have been reading through the sections with updated treatments in other countries which is always comforting to hear but who knows how long that will be!!

    Thank you again!

  6. #6
    Forum Member Ellie's Avatar
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    Welcome to you, your dad and your sister(s),

    Sorry about your dad’s diagnosis, but glad you’ve joined the forum.

    Your dad is right to get a 2nd opinion. I don’t know if he’s seeing Dr Orrell privately, but if his MND diagnosis is confirmed, he might be best served in the NHS system and attending a specialist multidiscipline MND Care Clinic. That means he’ll have access to his Neuro, physiotherapist, OT, respiratory people etc on the one visit.

    I have to agree with Wendy re the physio. I know it makes him feel good, which is great, but it’s best to attend a physiotherapist with neurological training.

    You asked the “how long?” questions; as others have said, that’s a “how long’s a piece of string?” question! But falls will likely hasten his decline in abilities to walk or drive if he sustains injuries that are slow to heal. Therein lies the conundrum – accepting mobility aids and using them judiciously or remaining independent and struggling to function safely. We tend to be a stubborn lot and often opt for the latter, sometimes with disastrous results!

    It’s great that your dad is positive; that’s so important.

    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  7. #7
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    Welcome to the forum.
    I am rather new here as well. My PLS diagnosis was recent but I am hobbling like your father. A year ago I was running regularly for fun and exercise. The difficult part of a MND diagnosis is that no one can tell you how fast it will progress. Some say they went from walking to power wheelchair in a matter of months and some it has taken years.
    I will say that if there is a history of falling that someone should help your father move about or he needs a cane or walking aid. A serious fall with broken bones can really make the situation worse. A person with MND does not heal well.
    Do keep the appointment with Dr. Orrell because he can answer whether the diagnosis is correct but can also maybe give further insight to you.
    Best wishes to you all and may your father get better or stabilize soon

    Harry K

  8. #8
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    Thanks all. Yes Ellie I do agree about the NHS, he is currently under private care but we have just registered him to an NHS doctor so once he gets some form of diagnosis from Dr Orrell we will get the ball moving with that too as im sure the help they have with equipment, treatment, medicines etc will be the best option for him.

    I will keep trying, hopefully the appointment with Dr Orrell will help him realise that he should use a walking aid, I will bring it up at the appointment and also ask about anything I can do to help. I dont want to keep asking my dad if he needs me to do anything as I dont want to seem like I am harassing him. Im not going to lie, I am struggling to accept it. I am endlessly hunting the internet finding out about treatments abroad, the potential of misdiagnosis (perhaps MMN???) and im sure this is all just wishful thinking but I guess its what everyone does when the 1st diagnosis comes up.

    Being the eldest I have always been the "strong" one, the one that has all the responsibility and im trying so hard to be strong for him and keep a brave face but I just find myself bursting into tears when I am on my own as I just cant imagine life without him, or life with him immobile and I know what he is like, he never accepts help and I just cant imagine him giving in for us to give him the help he needs.

    I will just be there for him, im going to go to his workplace as much as I can to do his emails and paperwork but I do have my own business plus 2 young children so im feeling a touch overwhelmed. Im not sleeping much as I just have it all on my mind constantly, he has 3 young children too of similar age to my kids and it really breaks my heart they will not have him here to grow up with.

    But I have to just brush it off as its not about me, he is the one that has to sleep at night with this inside of him knowing what lies ahead and I just cant imagine how he must be feeling inside, it breaks me

  9. #9
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    I can understand the feeling of being overwhelmed. In May of 2015 my elderly aunt finally went to a nursing home. The nursing home was about 20 miles from me but it could take 30-60 minutes to get there in traffic. My two sisters are all in the area but my older sister has 3 small children and a high pressure job and my younger sister is just not a carer. I went at least twice a week to see her and more as the end drew near. She passed in January 2016. We had a memorial service in April and then in May my dad was diagnosed with Leukemia and was in the hospital for a month with a poor prognosis. Once again I was the primary caregiver. He is still in treatment but thankfully is doing better. Now here I am with MND and I feel I cannot go to anyone in the family. They all care and check in on me but I do not want to unload on them on the bad days.
    This forum is great because people understand the difficulty of being a patient or a caregiver and you have a multitude of people who will listen and respond.
    I wish you better days and hope to see you posting often.
    Prayers to you

    Harry K

  10. #10
    Forum Member Terry's Avatar
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    Hi Sisters and welcome to the forum;

    As Wendy has said, I would not recommend over doing training. I think that it is important to do what you can comfortably do, stop before muscles hurt and also don't do anything so fast that your breathing stops you talking.

    Sorry to hear of your father's diagnoses, if anything it seems to be a fairly slow acting one. Well hopefully so.

    Please feel free to ask any questions etc.

    Best wishes, Terry
    The forum is still the best sorce for friendship and information. TB

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