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DAD - MND diagnosed now. What next?

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    #31
    Originally posted by Positive vibes View Post
    My brother has mentioned the 'Blue Badge' scheme, which would be incredibly handy for Dad if/when he drives, even if its only to the local supermarket. Does anyone have any advice or experience of this? Should this wait until the medical staff/teams have seen and assessed him? Thanks in advance all....
    My occupational therapist got me a blue badge within two days of seeing me.
    Each day is made easier with a bit of humour.

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      #32
      Get the OT to apply for the Blue Badge. I applied myself and was refused. Then my OT applied and I got it. Good luck, Lynne
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #33
        I've just got a blue badge, I think the form asks about any problems with mobility; I can walk but get tired, having to sit down frequently, which seemed to qualify. As far as driving is concerned, I got a 3 year licence when I told DVLA. The doctor I see said the main test for safely driving, is if you can turn the steering wheel sharply in case of avoiding something in an emergency, and also slam on the brakes in case of emergency, but I wouldn't know about an automatic car. I find certain finer hand movements are more difficult, like turning the key, but holding the steering wheel with the palm of my hands is fairly strong.
        You've had an awful lot to cope with, Positive Vibes, taking care of yourself is very important. All the best with it all xx
        Diagnosed July 2020, ALS bulbar onset.

        Comment


          #34
          Originally posted by Bowler View Post
          Thank you Bowler, that is really useful, I am going to discuss this with my parents....
          Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

          Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

          Comment


            #35
            Originally posted by Lynne K View Post
            Get the OT to apply for the Blue Badge. I applied myself and was refused. Then my OT applied and I got it. Good luck, Lynne
            Hi Lynne K

            That's a great point, we will do that, when we get to see an OT....
            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

            Comment


              #36
              Originally posted by Heather R View Post
              I've just got a blue badge, I think the form asks about any problems with mobility; I can walk but get tired, having to sit down frequently, which seemed to qualify. As far as driving is concerned, I got a 3 year licence when I told DVLA. The doctor I see said the main test for safely driving, is if you can turn the steering wheel sharply in case of avoiding something in an emergency, and also slam on the brakes in case of emergency, but I wouldn't know about an automatic car. I find certain finer hand movements are more difficult, like turning the key, but holding the steering wheel with the palm of my hands is fairly strong.
              You've had an awful lot to cope with, Positive Vibes, taking care of yourself is very important. All the best with it all xx
              Hi Heather R

              That's another valid point - he can walk, but, has had 3 falls and struggles to get up as he can't use his arms to lift himself now. He (as he puts it) is worse in the morning (swaying to the point Mum is fearful he will fall), and has to really focus on placing his feet in the right position to stand. Once he is up, Mum has to help him dress (can't do up buttons, lifting arms is a struggle), but he says his hands seem to get a little stronger as the day goes on.

              He is adamant he can drive as its an automatic and his right hand is worse than his left, but, can still steer properly. I do worry about his ability to react in an emergency, as he is also 82, and reactions are naturally slower than a younger person. However, against that he is a careful and cautious driver, as well as an experienced one. No accidents in 60+ years behind the wheel - now that's some record!

              I do feel like I am bouncing from one appointment to the other, to contacting trades, getting snags put right, taking Mum shopping, walking dog, researching their needs, requesting guides, so being on here really helps cut down the time/research aspect.

              A SHOUT OUT TO EVERYONE HERE, THANK YOU VERY MUCH LOVELY PEOPLE!

              I have yet to face the avalanche of paperwork/applications for Dad, since the GP hasn't even had the letter from the neurologist yet.

              I asked him if he would contact his insurer's and DVLA, as MND is a illness that is 'required reporting', and although he was a bit fearful his licence would be taken away, he did contact them. He is now reassured that they don't do that. He was informed that only if a doctor advises against him driving, would this ultimately be the case... I said that this was great he is now 'legal and insured' (or will be when the DVLA form arrives). I really want him to be involved and front and centre of what's happening at every stage.

              Ok, off now to face the latest problem in the repairs....

              Take care of yourselves, all of you, love n hugs....
              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

              Comment


                #37
                Originally posted by GaryM View Post

                My occupational therapist got me a blue badge within two days of seeing me.
                Nearly missed you GaryM

                That would be fantastic - if that happens for Dad, that's really cheered me up.
                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                Comment


                  #38
                  Hey all

                  Another day in the land of chaos...

                  Managed to get Mum to her GP appointment, and, not to be too graphic as to why (gents look away now) what she had described to me didn't exist when the GP examined her intimately. Rather taken aback at this. She described (gorily and graphically) lots of blood, pain, lump, so bad that it was affecting her walking.

                  And then, zilch, nada, nowt, nuthin', zero evidence of this. Fortunately as I have Mum's permission to contact medics on her behalf (her consent in writing when she was with it), I had sent detailed info of her memory problems, plus other health issues, plus her current condition hence why I was asking for an emergency appointment. The female GP was lovely, sympathetic and kind, and we are due another consultant for her urine incontinence next week....

                  I am seriously wondering if this event occurred, if it was last week, or last month, if she is hallucinating, I really do not know.

                  Rant alert to follow....

                  For Dad, I contacted the 'connect' people on the MND site, and ordered hard copy guides for him (and for the rest of us to learn what is needed, and what it's all about). I checked out the nearest MND centre, so I have their location saved (do not know if needed), and we all had a meeting with surveyor, contractor, etc to see how work is progressing on fire repairs. Unfortunately, another family member paid a flying visit, told Mum the new attic windows were inferior/poor quality and left.

                  Mum is now angry and chuntering, wanting them replaced again, Dad is weary and just wants to accept as is, to get it all done and over with, so that all the chaos (trades in and out, Covid restrictions including screen so they can't access half the home, mess, dust, noise, stress) is finished. I wish the family members concerned could see what their off the cuff comment has caused.

                  The problem is, they wanted everything replaced as near identically as possible, from when the loft room & en-suite was created. The manufacturer of the windows used to have a great reputation, but, now we learn, their standards have diminished over the last 25 years. The insurers will only pay for 'like for like' i.e. that their original manufacturer of the windows is an acceptable replacement for the new windows.

                  The end result is that the parents will have to either accept the poorer quality windows to get the work completed on schedule, OR, pay for an upgrade (the difference of prices between 2 manufacturers), and which will delay completion/decoration/carpet/re-furnishing.

                  My feeling is that any delay should be avoided, windows etc done ASAP, as Dad needs an assessment. How can he be assessed when they are living in a building site? Argh....I also worry that any team visiting would be horrified and want to whisk them into a home for their own safety. Trip hazard doesn't even begin to cover it. Sorry I am raving slightly....

                  Dad feels the same - get it done and over. Tried explaining this to Mum, but, she either took no notice or didn't remember us discussing this, as she complained to the surveyor about the windows. She also said that she didn't order them. And when I said I was there with the surveyor, Dad, her and contractor when the windows were discussed & they were agreed and ordered. She didn't remember the conversation, even though she also picked the colour of the new blinds at the same time. Double argh.

                  Dad is leaving it to myself and Mum to order other furnishings/carpets, I don't think he has the strength or motivation to argue.... shoot me now...
                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                  Comment


                    #39
                    Hi ,organising paperwork is really useful as by the time so many people call to see your parents, ring or send appointments initially it can be confusing.
                    I made a list of names and contact numbers and put a quick note of their speciality..ie respiratory consultant..mainly because my husband Steve was anxious who to contact if things change and advise needed.
                    Sorting paperwork also felt worthwhile for the future..saving the hassle of not finding stuff.
                    Its hard with two parents with diverse needs but as professionals come on board at least you should get some support.Cant recall if you have sorted lasting power of attorney but well worth discussing with your parents.
                    Take it steady and hope once your parents are known to health professionals the help will come.Also there are local and national carers associations for advise and support if you need it easily found on line.Look after yourself as you don’t want to burn out.Best wishes
                    Mary

                    Comment


                      #40
                      Originally posted by Mary C View Post
                      Hi ,organising paperwork is really useful as by the time so many people call to see your parents, ring or send appointments initially it can be confusing.
                      I made a list of names and contact numbers and put a quick note of their speciality..ie respiratory consultant..mainly because my husband Steve was anxious who to contact if things change and advise needed.
                      Sorting paperwork also felt worthwhile for the future..saving the hassle of not finding stuff.
                      Its hard with two parents with diverse needs but as professionals come on board at least you should get some support.Cant recall if you have sorted lasting power of attorney but well worth discussing with your parents.
                      Take it steady and hope once your parents are known to health professionals the help will come.Also there are local and national carers associations for advise and support if you need it easily found on line.Look after yourself as you don’t want to burn out.Best wishes
                      Mary
                      Thanks Mary C

                      The guides sent by the 'connect' folks are tremendously helpful, we are going to work through these together, family meet-up today.

                      There is a list in the guide pack, guiding us to the different specialists we will probably see (with blank spaces ready for names and contact info), as my Dad does get very anxious about things anyway, I think due to his age. Definitely need to be organised. I am well impressed with the huge amount of info, etc in there.

                      Two parents needing help is really taxing me & we are yet to get Mum assessed/diagnosed. However, they are sorted re POA/wills, due to having helped other poorly relatives themselves, and knowing the problems you can get if these aren't done.

                      I have to take it a day at a time, addressing each problem/issue as it occurs as there is no other way I can deal with this... Apologies for yesterday's rant, but, it was a 'final straw' moment. I fully appreciate the relative commentating was only worried on my parent's behalf, with the best intentions that they have everything done right, and anxious that they have value for money.

                      The downside is how Mum reacts to any problems, which they don't realise, and having to calm her down through talking her through the options: e.g. when trying to estimate values of items lost in the fire, she ran through a roller-coaster of emotions, grief at losing stuff, anger as to why it was taken away to the skip (smoke and fire damage), forgetting things were destroyed, getting upset and angry all over again, forgetting again, then something triggering her. I spent a lot of time trying to calm her down, trying to stop her 'rescuing' stuff from the skip as she didn't seem to comprehend smoke damage, some stuff was still sent to a specialist laundry via insurer's that she had 'rescued' and then we had to re-assess and re-value these because they were classed as beyond repair. She was also told not to go upstairs (fire commander deemed it unsafe), kept forgetting and going half-way up or all the way into the room, in the end the specialist cleaners had to tape it all up to prevent this. She also got very hostile very quickly with my Dad over any issues, so, it felt like being a referee at times.

                      And then when Dad had a bad fall, he got very hostile to her wanting to accompany him walking the dog, or any of us. I had to step in and ask him to at least take his mobile so he could call us if he needed to. I think anger is a natural reaction for anyone with all that's happening to them, but, hoping that they can work through this soon...

                      Off to the family meeting now, and I hope to explain to all the things that have been happening, so everyone is on the same page. Wish me luck!
                      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                      Comment


                        #41
                        Good luck and hope that the difficult referee role that you’ve had to do between your mum and dad reduces significantly very soon. Love Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment


                          #42
                          Positive vibes I do hope your family meeting went as good as it could be.

                          Richard
                          Richard

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                            #43
                            Originally posted by Lynne K View Post
                            Good luck and hope that the difficult referee role that you’ve had to do between your mum and dad reduces significantly very soon. Love Lynne x
                            Hello Lynne K

                            Thank you. It isn't easy... feels like herding cats sometimes.
                            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                            Comment


                              #44
                              Originally posted by richard View Post
                              Positive vibes I do hope your family meeting went as good as it could be.

                              Richard
                              Thanks Richard. Long update to follow!

                              We have had a hectic few days, grandkids (I say kids, they are in their 20s and 30s now!) descending on masse, fortunately the sun was out so we could distance & catch-up. Then grabbing a few hours with parents and siblings to talk things over.

                              The upshot is, that Dad agrees to getting support via applying for DS1500 form (from GP), I made sure that I emphasised this wasn't simply based on life expectancy, as he can have it in place for 3 years, before re-applying. He was feeling really down that the MND nurses are coming via the local hospice, (his consultant's letter sending a copy to the hospice as well as to local GPs) but, thank goodness Ellie had already pointed out to me that a hospice isn't just there for end of life care. I told him that he isn't going there anytime soon, it is just another door of support opening for him. If I hadn't asked everyone on here, I wouldn't have known so, a big THANK YOU Ellie! It perked him up again.

                              The truth is, none of us know how long we still have him for, so we want to make the most of it. He has even agreed I can accompany him into GP and other medical appointments, which is a huge surprise, as he is so independent. So I typed up a letter for GP where he gives his permission for me to be his carer, arrange appointments etc which he has read through and agreed, and signed. I said I want to make sure he leads us on the decisions he wants, at every appointment, and every stage, but by having everything set up, written down and organised, he will have great peace of mind and not stress that it needs to be done, when he may have less energy/motivation.

                              I could see he was flagging though, with the intense conversations we were having, and looking tired. He can't yet face reading the 'Living with MND guide' that the contact folks kindly sent us. I read it myself with gritted teeth, but, I said its ok, treat it as they suggest, a reference guide to dip into whenever he had questions himself, or was in the mood to read a little bit of it.

                              And I am hoping against hope that what's described won't necessarily all happen to him. The best thing is, that another sibling does want to be involved, to help with his personal care. I think Dad would prefer his son, rather than daughter, to do certain things for him, saving a bit of dignity when needs must. It may be that I am more organiser/admin for both parents, with my brother helping Dad and me helping Mum, for more intimate care needs. It's such a relief, as I was quavering a bit in giving full on care for them both, i.e. wondering if I could actually do it.

                              He's been on his 'Riz' meds for a week now, and now taking quinine which is, at the moment, keeping the night cramps at bay so at least he's getting his sleep back. So we are being told he doesn't need the warm socks or electric heat pad now, but, I will search out the ones he wants in case this changes in the future. And he has been a bit more open about his symptoms, describing fasci-whatsits in his muscles, so I am hoping that both my parents have their minds more at peace that the family are pulling together to do what they can.

                              We all had dinner today for his favourite Sunday roast (just me and parents as we are bubbled), sadly, although he was excited to drink wine (a gift from the 'kids') he couldn't stop coughing after every sip (and he kept trying, believe me!), did manage his dinner, but the shortbread (another 'kids gift) defeated him. It's a bit gutting to see him struggling to eat or drink some of his favourite things, and even though I had mentioned to him he may want to avoid 'dry, flaky' food like that as per the guide, he still wanted to try, and I sympathise, as we are on a steep learning curve here, seeing what he can still enjoy.

                              Taking it day by day, he just wants things to be a normal as possible, and I don't want to lay any more emphasis on the medical stuff than needed. The way I see it, I want him to enjoy the best quality of life, try doing everything he normally enjoys, and entice him out to the places he likes going to, with me and Mum along for the ride. It may be called a 'life-limiting' disease, but, I am determined he isn't going to interpret this as 'life over' - want him to live every minute of enjoyment he can....

                              Love n hugs to each and every one of you. xxx
                              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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                                #45
                                Positive vibes Your dad sure is lucky to have you!

                                Pace yourself, it can be a long haul, and don't forget you have your own life to live too... x
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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