Breaking the Silence Hereditary & Wild Type ATTR Amyloidosis Explained Through Real Experience

Join Jaime and Vincent as they discuss their journeys and tribulations after the paradigm shift of an Amyloidosis diagnosis. dive into their stories, discoveries, and advice for Amyloidosis carers and patients; from coming to terms with a diagnosis and finding the strength to keep going, to learning how to fight the odds.

Learn more about Jaime, and her story as a carer, mother, and patient advocate.

00:00:00.080 Okay. So,
00:00:01.680 >> we’ve been family for a long time.
00:00:03.679 >> A long, very long time.
00:00:05.520 >> I mean, I think the first time we met
00:00:07.680 was when you came to Malaysia with Lucy.
00:00:09.920 >> Yes, we did. That was in the ‘9s, I
00:00:12.559 think.
00:00:12.800 >> I know. You came all the way to visit
00:00:14.320 your cousin.
00:00:15.759 >> So, Aubrey uh was my husband and he’s
00:00:20.800 your first cousin.
00:00:21.600 >> Yeah, my first cousin. Yeah.
00:00:23.199 >> Um been through a hell of a long journey
00:00:25.840 with this hereditary condition.
00:00:28.160 >> Yeah.
00:00:29.359 um
00:00:31.359 you know you’ve got two kids and I’ve
00:00:33.200 got four kids and with the genetic
00:00:36.239 condition
00:00:38.399 you know especially my concern would be
00:00:42.079 for any four of them to be diagnosed
00:00:44.960 with this
00:00:46.800 illness.
00:00:47.280 >> Yeah. and they we’ve had a conversation
00:00:51.600 within the family and the children
00:00:54.239 um and we’ve decided that you know they
00:00:56.800 do want to get tested
00:00:59.199 but as you know with gene testing
00:01:01.840 it’s a huge topic isn’t it?
00:01:03.600 >> Uh yes
00:01:05.680 it’s a it’s a difficult one um for
00:01:08.560 families to
00:01:10.960 decide when to get gene tested. I mean
00:01:13.600 when my experience is that when I was
00:01:17.759 first diagnosed uh it was slightly
00:01:20.320 different for us because uh the family
00:01:22.720 already had it. My mother mother had it
00:01:25.040 so we knew potentially that we would get
00:01:27.920 it.
00:01:28.799 >> Um but the doctors at that time you know
00:01:31.680 we’re talking 16 nearly 20 years ago.
00:01:34.079 >> Yeah. Absolutely.
00:01:35.280 >> So so that hasn’t been a long time. They
00:01:37.520 suggested that not to be in those days
00:01:40.479 not to be gene tested really until
00:01:43.040 probably because the onset of symptoms
00:01:46.079 in our particular family version of
00:01:48.799 emoidosis presents itself in late 40s
00:01:51.920 early 50s
00:01:52.640 >> for men and the women’s a little bit
00:01:54.159 later.
00:01:54.560 >> Yeah. Women. Yes. Correct. That’s true.
00:01:56.159 >> This is the Portuguese strain.
00:01:59.200 >> Yeah. 47. Yeah. And so they purposely
00:02:03.520 had said, you know, don’t get tested
00:02:05.439 until probably
00:02:07.439 early 40s because it has an impact. In
00:02:10.239 those days, it used to have an impact on
00:02:13.599 >> once you know you’ve got something even
00:02:16.239 though you think you may not change, you
00:02:18.000 do change because you know something
00:02:20.080 that you didn’t previously understand or
00:02:22.720 know about. Also in this this world, you
00:02:26.400 know, you’re young and you want a
00:02:29.200 family, you want to move forward in your
00:02:31.360 life. So it’s very difficult being
00:02:33.920 diagnosed in those days because it it
00:02:36.640 had so
00:02:38.080 >> much um
00:02:39.440 >> implications
00:02:40.080 >> implications on getting loans, getting
00:02:42.560 mortgages,
00:02:43.840 >> health insurance, everything.
00:02:45.519 >> Y
00:02:46.480 >> these days it’s slightly different. I
00:02:48.400 think in a lot of countries especially
00:02:51.360 >> uh
00:02:52.560 >> most countries now
00:02:55.440 >> when you get diagnosed with a gene
00:02:58.400 uh counseling gene you don’t necessarily
00:03:02.800 have to divulge that you’ve got a bad
00:03:06.239 gene.
00:03:06.959 >> Yeah. As well in the UK and the US I
00:03:09.440 guess.
00:03:09.760 >> Yes. But you know it is a difficult one.
00:03:13.599 But in these days I would personally I
00:03:16.720 would recommend that they get tested as
00:03:19.440 soon as
00:03:21.280 >> they think they’re ready to be tested.
00:03:24.640 >> You know not too late.
00:03:26.560 >> Yeah.
00:03:27.200 >> Especially looking at the trends in your
00:03:28.959 family of when people start getting
00:03:30.480 symptoms. But also uh young enough so
00:03:35.280 >> you can you can adjust your life
00:03:36.959 probably to to to work forward. So
00:03:40.080 >> yeah,
00:03:40.480 >> you can probably have a your quality of
00:03:42.560 life longterm is better than probably
00:03:45.920 that I had
00:03:47.680 >> when there in in this world when there
00:03:49.920 was no drugs or anything available to
00:03:52.640 stop this or or or to slow this disease
00:03:55.200 down. So it it’s up to the individual to
00:03:58.080 understand that and to be mentally
00:04:01.680 prepared not just them but the family. I
00:04:04.319 think very important. I think you
00:04:06.000 mentioned really
00:04:08.959 um like with with the four of my kids um
00:04:17.279 when will they be ready you know I mean
00:04:19.600 it’s a difficult one because I I know of
00:04:21.600 some family particularly talking about
00:04:24.479 in New Zealand context we still don’t
00:04:27.919 have um protection when it comes to
00:04:32.160 revealing of the gene in information,
00:04:36.000 genetic test information because
00:04:38.240 insurance company for example, they’re
00:04:40.080 still privy. They can
00:04:42.240 >> be privy to the details of what came out
00:04:45.840 as your from your results. So a lot of
00:04:48.240 people um are hesitant to be genetically
00:04:51.360 tested and this um of course will
00:04:54.080 include my four kids because you know
00:04:55.360 they are Kiwi citizens. However, um as a
00:04:59.040 mom and as a patient advocate and having
00:05:02.080 um been through this journey with my
00:05:03.919 husband, late husband or your cousin,
00:05:06.960 >> um
00:05:08.160 >> I’ve I’ve taken the stance of telling
00:05:10.560 them to be tested only because
00:05:14.320 >> I guess I I I suppose what you say is
00:05:16.320 right in terms of like you have to be
00:05:18.320 ready for it. And with my four kids, you
00:05:20.479 know, we we talk about it and we’re very
00:05:23.199 open about it and they’ve seen their
00:05:25.280 father
00:05:26.960 their father uh
00:05:29.840 you know go downhill with struggle
00:05:32.000 struggle with that know we’ve all you
00:05:34.080 know struggle we’ve seen other family
00:05:36.240 members as well struggle in pass away
00:05:40.000 because because of that
00:05:41.199 >> your twin
00:05:41.840 >> yeah my twin yeah my twin died um you
00:05:44.960 know we’ve lost a lot of people my
00:05:46.560 mother and lots of other cousins
00:05:48.960 >> to this disease
00:05:50.479 >> so but I think also saying that it is a
00:05:53.280 very difficult situation And you know,
00:05:56.960 we’re quite lucky in Europe because we
00:05:59.039 have different methodology and
00:06:00.720 improvement drugs. But if you look at
00:06:03.039 get being able to be gene tested at the
00:06:05.600 right time,
00:06:06.960 >> it’s not quite a right time or wrong
00:06:09.360 time. But I think
00:06:11.840 >> be mentally prepared for it at whatever
00:06:14.240 age. But also you’ve got to have that in
00:06:16.240 your mind the fact that if you get
00:06:18.240 tested too late you may not be able to
00:06:21.280 get the benefit of possibly having drugs
00:06:24.639 to to to
00:06:26.800 ban that particular disease. So
00:06:29.600 >> you it is difficult but you have to be
00:06:32.479 guided by somebody you know whether it’s
00:06:35.440 family or and also you need to take the
00:06:37.360 opinion of doctors around you.
00:06:39.600 >> Yes. to give you that moment in time
00:06:42.960 when you think okay I’m ready and if you
00:06:46.080 don’t get tested now or whatever that
00:06:48.319 time is it may impact the rest of your
00:06:50.880 life.
00:06:51.199 >> Yes.
00:06:51.680 >> From a from a a medication point of view
00:06:54.240 which you know it’s it’s seen now that
00:06:57.440 by taking medication before you start
00:06:59.680 getting symptoms you can be have
00:07:02.400 probably
00:07:04.319 a normal life quality of life.
00:07:06.880 >> Agreed.
00:07:07.280 >> You may not have to go to hospital so
00:07:08.960 much. Yeah. Yeah.
00:07:10.000 >> Uh and so that’s really powerful and in
00:07:15.120 and also that also shows that
00:07:19.840 the next generation of family
00:07:22.800 >> are going to be in a better position
00:07:24.400 than we ever would have even dreamt of.
00:07:27.680 I think that’s very important.
00:07:28.960 >> I think with um with our family
00:07:32.319 the good thing is that we talked about
00:07:34.960 it.
00:07:35.520 >> Yes. We’re very open about sharing
00:07:39.120 because you’ve been there for Aubrey,
00:07:40.479 both of you have been there for each
00:07:41.919 other.
00:07:42.639 >> Um how openly
00:07:46.080 uh ready you are to talk about it, but
00:07:48.800 but not all families. I I I know of
00:07:51.919 families in New Zealand that actually
00:07:54.080 don’t want to talk about it for personal
00:07:56.080 reasons, which we understand.
00:07:58.160 >> Yeah. You know, we completely understand
00:07:59.840 why people are just because of the
00:08:01.759 trauma of seeing how their parents or
00:08:04.400 their loved ones suffer. They just
00:08:06.720 rather not know,
00:08:08.400 >> especially in New Zealand, because
00:08:09.520 what’s the point, you know, they people
00:08:11.039 have said, "What’s the point? There’s no
00:08:12.319 treatment."
00:08:12.879 >> Yeah.
00:08:13.360 >> Why would I want to find out, you know,
00:08:15.199 because that could impact my life and
00:08:16.720 then what?
00:08:17.680 >> Um, but
00:08:19.039 >> would you agree that talking about it is
00:08:21.039 so important?
00:08:22.000 >> I think talking about it’s not just the
00:08:24.960 disease that we talk about. It’s like
00:08:27.120 anything in life. Yes.
00:08:28.400 >> You know, other things that come along
00:08:30.319 in in life that affects you,
00:08:33.120 >> it’s always good to share with other
00:08:35.120 people because it takes it takes that
00:08:37.760 burden some of the burden away from you.
00:08:40.479 And also it, you know, speak speaking to
00:08:43.599 somebody who’s experiencing the same
00:08:46.480 thing
00:08:47.680 >> um shows that you’re not alone in this
00:08:49.920 journey and it’s very important to
00:08:52.240 share. And the more you can share and be
00:08:55.200 open and honest with things helps other
00:08:57.920 people as well on the road. And that’s
00:09:00.080 what I’ve seen.
00:09:01.680 >> And going back to your point about
00:09:05.200 >> talking to other family members, it is
00:09:07.839 can be difficult because some family
00:09:10.080 members are not quite ready to be talked
00:09:12.959 to about it. you know, even with Aubrey
00:09:15.519 for for a little while, he was in denial
00:09:17.920 for a little while,
00:09:19.360 >> you know, and it did take a bit of a
00:09:21.120 jolt for us, you know, to to get to him
00:09:24.000 and say, you know, don’t be nervous,
00:09:27.360 don’t be scared, you know, we’re all in
00:09:29.360 the same journey together. So share and
00:09:32.160 support is very important. So true. And
00:09:34.560 most people all they want to know is
00:09:37.440 there somebody else going through the
00:09:38.959 same situation and the same dayto-day
00:09:43.279 problem problems or inability to do
00:09:46.560 things and share that. So they’re not
00:09:48.480 alone really because if you don’t talk
00:09:50.880 to other people you become
00:09:53.519 >> self inward looking
00:09:55.680 >> and it’s so easy
00:09:56.399 >> and it does destroy you mentally
00:09:58.880 >> probably emotionally.
00:10:00.080 >> Yes. Yes. Yes. you and you can get to a
00:10:01.920 place where you can be very
00:10:05.360 >> hateful about what you’ve got and then
00:10:07.519 take it out on others.
00:10:08.560 >> Yeah. Yeah. Yeah.
00:10:09.200 >> So instead of talking to somebody, you
00:10:11.680 take take that hate on out of on other
00:10:14.079 people. So it’s very important. But you
00:10:17.200 unfortunately you do need to read the
00:10:19.200 room as they say
00:10:21.360 >> with families.
00:10:23.200 >> Um but you know the more open you are
00:10:26.240 the more people trust you. And also if
00:10:29.440 you’re going through the same experience
00:10:31.600 makes a huge difference to that person.
00:10:34.160 >> And I and I always say that the the good
00:10:36.959 thing about having a hereditary
00:10:38.480 condition is that you’ve got family
00:10:40.160 members there that can understand what
00:10:43.360 you’re going through.
00:10:44.800 >> And um I know Aubre’s very very
00:10:48.640 fortunate and grateful that he had you,
00:10:52.480 you know, even towards the end of his
00:10:54.000 life, right? you know, when he’s got
00:10:56.160 days when he just can’t cope, at least
00:10:58.000 you’re there for each other.
00:10:59.360 >> Yeah.
00:10:59.600 >> And for me as well, you know, at least I
00:11:01.279 have Lucy, your wife.
00:11:03.200 >> Um because we essentially uh go through
00:11:06.320 the same thing.
00:11:07.440 >> Yeah. And on that subject, you know, as
00:11:11.120 a patient, we’re always on that journey
00:11:13.519 much quicker than
00:11:15.519 >> Yes. It’s true. than the rest of the
00:11:17.040 family or
00:11:18.959 or the person who’s your spouse or
00:11:21.120 whoever it is caring for you. they have
00:11:23.920 to kind of because I in my own journey I
00:11:27.040 feel that even though I’m on luckily I’m
00:11:30.640 on drugs that sounds bad but not drugs
00:11:34.640 on medication sorry in the UK we say
00:11:36.959 drugs but the fact the fact that um I
00:11:41.680 noticed for me personally that every 6
00:11:44.480 to 8 months my ability to do things
00:11:47.279 changes my body changes so I’m already
00:11:50.959 there but the person who’s looking after
00:11:54.000 me or supporting me. It’s not not always
00:11:56.880 quite there. So, it’s very important for
00:11:58.800 you to share your experiences, the fact
00:12:00.880 that you can’t do this anymore. It’s
00:12:03.200 simple. It’s simple things like
00:12:05.519 imbalance or you know in UK cutting
00:12:08.720 cutting the lawn for instance. Last year
00:12:10.959 I could cut the lawn it take me well
00:12:13.760 small more small lawn took me about an
00:12:16.480 hour. Now I I really have find it hard
00:12:20.800 >> to do it too much at all. So you have to
00:12:25.200 so you’re on this changing continuous
00:12:27.279 changing journey which people have to
00:12:30.480 catch up with you
00:12:32.000 >> and the only way they can do that is you
00:12:34.240 have to explain to them
00:12:36.399 >> and be truthful the fact that I can’t do
00:12:38.800 that anymore by picking up a cup because
00:12:41.120 you with the hereditary you have
00:12:42.959 polyuropathy
00:12:44.560 >> and in my case in most cases the
00:12:47.839 polyuropathy
00:12:49.360 versus the cardiopathy is worse
00:12:52.399 >> you
00:12:53.279 talking about wild type earlier we were
00:12:55.920 you know
00:12:57.120 >> people tend to forget and it’s very
00:12:59.120 important that people always seem to
00:13:02.000 segregate between wild type versus
00:13:04.880 hereditary
00:13:05.680 >> correct
00:13:06.480 >> and really in reality they’re very
00:13:08.959 similar
00:13:09.440 >> 100%
00:13:10.079 >> because I get polopy but also I’ve got
00:13:13.120 severe heart
00:13:14.560 >> cardop thing I have antifibrillator
00:13:17.680 um I have atrial fibrillation
00:13:20.160 um slow walking So you know you can’t
00:13:23.200 really segregate those and and and
00:13:26.399 >> and I think it’s very important that you
00:13:28.560 understand your changes that’s happening
00:13:30.399 in your and be upfront whoever is
00:13:34.000 looking after you to say I can’t do that
00:13:35.519 today
00:13:36.240 >> or I can’t do that anymore and and be
00:13:41.120 and make sure that you explain that that
00:13:44.399 for that person because at the end of
00:13:46.240 the day
00:13:48.399 you have to rely on them.
00:13:49.760 >> Yeah, you do. And and also one of the
00:13:52.240 key things that especially men find it
00:13:55.040 very difficult to ask for help
00:13:56.639 >> 100%. Yeah.
00:13:57.839 >> And you know if you look at the last
00:13:59.760 generation they’re even worse. You know
00:14:02.320 even now my my my
00:14:04.880 wife’s uh parents you know than there
00:14:07.839 are in the ‘9s
00:14:09.199 >> and I have a stick now cuz I I can’t
00:14:11.600 walk as well balance
00:14:13.839 >> um because the signaling from my legs
00:14:16.000 are not as great to my brain. So I have
00:14:18.480 to use a stick. So you have to
00:14:22.079 consciously say I can’t do that. I need
00:14:24.639 a stick.
00:14:26.000 >> They send oh no I don’t need a stick.
00:14:28.560 >> You just have to get through that and
00:14:30.079 say it’s not it’s for it’s for a reason
00:14:33.839 you need a stick. It’s to keep balance.
00:14:36.160 It’s you know it only takes to fall over
00:14:39.760 >> one second and that could create a huge
00:14:42.480 problem for you. Um
00:14:44.720 >> so so you have to be upfront.
00:14:47.920 Don’t be conscious that you know people
00:14:49.680 see you differently. You just have to
00:14:52.079 because at the end of the day I find
00:14:54.079 that with this disease long term you
00:14:57.440 know people didn’t expect me to to last
00:14:59.839 two or three years. No, I’ve done with
00:15:02.880 symptoms I’ve done over 16 years, you
00:15:05.839 know, and you know, we’ve touched base
00:15:07.680 on that other things, reasons why I
00:15:10.399 think we I may have survived so long.
00:15:13.040 >> But is also one of the things is to have
00:15:16.000 a positive attitude and share as much as
00:15:19.760 you’re feeling
00:15:22.000 >> to whoever is looking after you or your
00:15:24.880 friends because people will never quite
00:15:26.560 know.
00:15:27.279 >> Yeah. Because in reality it’s a hidden
00:15:29.839 disease really because
00:15:31.440 >> outwardly if you look at me I look quite
00:15:33.440 well
00:15:34.079 >> but inwardly and balance and everything
00:15:36.880 it’s you know
00:15:38.639 >> very bad
00:15:39.600 >> but you’re really very you’ve got a lot
00:15:41.600 of clarity about
00:15:44.720 >> your
00:15:46.480 ability almost from one point to
00:15:49.680 another. Um, how do you how did you
00:15:52.959 achieve that
00:15:55.199 um that ability to
00:15:59.360 come into terms with the deterioration
00:16:02.480 that you feel in your body and I and
00:16:05.680 I’ll say this um based on my experience
00:16:08.320 as a caregiver for Aubrey before as well
00:16:10.399 because initially when he got diagnosed
00:16:13.519 um there was this huge fear in him
00:16:15.360 because he used to he saw his dad
00:16:17.440 deteriorate his grandmother as well and
00:16:20.399 you know his cousins around just passed
00:16:22.720 away. There was a lot of fear that came
00:16:25.199 with that diagnosis
00:16:27.279 >> and I remember him going through a
00:16:29.839 period where he actually got quite
00:16:32.160 >> fearful and depressed and kind of I
00:16:34.880 could sense he was withdrawing from me
00:16:36.800 from the children from friends. Yeah.
00:16:38.880 >> Um, and I and and and I had to
00:16:43.920 the the good thing about and you touched
00:16:46.320 on this, the ability to openly
00:16:48.720 communicate no matter how difficult it
00:16:50.720 is.
00:16:52.320 you have to kind of rise to the occasion
00:16:54.560 as a caregiver and I can only speak from
00:16:56.639 a caregiving point of view that you have
00:16:58.720 to rise to the occasion even though
00:17:01.920 it’s very difficult to talk about um
00:17:04.880 what you see in front of you and you
00:17:07.359 know you love that person and you want
00:17:09.679 to be kind to that person but at the
00:17:11.679 same time you have to be open with what
00:17:16.079 you see and and I remember telling
00:17:18.000 Aubrey
00:17:19.760 >> are we not worth living for I know you
00:17:22.079 have this diagnosis. Are we not worth
00:17:24.079 you getting up in the morning?
00:17:26.000 >> And I think at that
00:17:27.599 >> that was the turning point for him when
00:17:29.679 he realized that actually there are
00:17:31.440 people around me that
00:17:32.960 >> that care for me and love me. Yeah.
00:17:34.880 >> So how did you come into that? What was
00:17:37.280 it similar or
00:17:39.120 >> similarish because
00:17:41.280 >> you know I’ve always been a positive
00:17:43.280 person you have
00:17:44.240 >> and you know people are different so
00:17:46.640 >> they take things differently in their
00:17:48.400 life.
00:17:49.200 speaking from our point of view
00:17:50.720 >> from my point of view. So you know in my
00:17:54.880 journey and same as Aubry’s journey
00:17:57.039 before there were medication or not
00:17:59.440 >> we went through a similar thing in our
00:18:01.840 life like we had a liver transplant
00:18:03.840 which was quite a big
00:18:06.000 >> yes
00:18:06.720 >> big moment in my
00:18:08.880 >> in my journey
00:18:11.360 >> you know and that kind of set the scene.
00:18:16.320 >> Sure. Uh and you know it was it was
00:18:18.799 quite a momentous time and you do a lot
00:18:23.280 of soulsearching inside about your
00:18:25.840 mortality and you know other people
00:18:29.919 supporting you you know whether you’re
00:18:31.919 worth
00:18:33.280 >> living and it I’m not saying it’s easy
00:18:37.600 but you have to
00:18:40.080 >> and you do go through do you you do go
00:18:42.480 to a very dark place
00:18:44.400 >> and you know you become very insular and
00:18:47.440 you don’t it’s all about me. Um,
00:18:50.480 >> but you but sometimes you you got to
00:18:52.880 crawl yourself out of that somehow. And
00:18:55.919 I it to be honest, it took me several
00:18:58.640 years to do that. And some of the reason
00:19:02.000 why that was, you know, I was coming to
00:19:03.840 terms with the amloidosis, the liver
00:19:07.520 transplant. Uh and also it’s very good
00:19:10.880 to have somebody like your spouse or
00:19:13.440 somebody who recognizes the fact that
00:19:16.799 you’re going through this
00:19:18.960 >> dark place and sometimes to be I’ve
00:19:22.720 always I remember doctors saying you got
00:19:26.080 to be cruel to be kind sometimes uh from
00:19:28.640 a from a caregiver point of view and
00:19:30.960 even today my wife Lucy um kind of says
00:19:36.640 to you oh you can do that and it’s so
00:19:39.120 easy for the patient to say I can’t do
00:19:41.200 that.
00:19:42.240 >> But you have to have that mentality to
00:19:44.320 say yes I can really do that and be
00:19:46.880 positive. Try and do that thing whatever
00:19:48.799 it is is climbing the stairs or simple
00:19:51.360 things like walking a bit further or
00:19:54.720 >> getting up in the morning earlier than
00:19:56.480 you would and stay in bed. Yes.
00:19:58.320 >> Because
00:20:00.799 >> if you stay isolated so long you become
00:20:04.320 that becomes the norm. So it it is
00:20:06.720 difficult and and I should say this.
00:20:10.160 It’s very important and I’ve met a few
00:20:12.240 patients where especially men where they
00:20:15.200 blame other people for what they’ve got.
00:20:18.480 uh you know I used to sit in when my
00:20:20.480 appointments in sit in the waiting room
00:20:23.120 and I just used to listen to the
00:20:24.640 patients
00:20:26.160 nationalond
00:20:28.400 and you know couple of times the the
00:20:30.960 male who has the disease was going at
00:20:33.200 his wife you know he hadn’t come to
00:20:36.320 terms with that he was blaming other
00:20:38.480 people and her wife’s took took that
00:20:41.200 >> wow
00:20:41.679 >> so
00:20:43.200 >> and I think it’s very important
00:20:44.880 especially for men and for women yes
00:20:47.200 >> to recognize the fact that they
00:20:49.600 >> need counseling.
00:20:51.039 >> Yes.
00:20:51.600 >> Doesn’t have to be. We talk about gene
00:20:53.840 counseling. It’s not gene counseling.
00:20:55.520 It’s just counseling. Correct. You know,
00:20:57.039 whether by yourself or with your
00:21:00.159 >> your soulmate or whatever.
00:21:01.840 >> Yes.
00:21:03.120 >> You know, don’t be scared.
00:21:05.440 >> Don’t just because you’re a man, it
00:21:07.039 doesn’t mean you’re going to have a
00:21:08.880 problem. It’s very important to be open.
00:21:10.720 And that’s one of the good things. Be
00:21:12.799 open. Yes. And it and it does bring out
00:21:15.600 a lot of things not just about your
00:21:17.840 disease but other things. So you have to
00:21:20.799 >> kind of be ready for that. But it’s very
00:21:22.799 important and I don’t think
00:21:25.039 >> I wouldn’t be in the state I am today
00:21:27.520 without having that journey of
00:21:30.480 >> of mental health and stuff if I did have
00:21:33.039 counseling.
00:21:33.760 >> Yeah. I think you touched on a very top
00:21:35.760 important topic mental health.
00:21:37.600 >> Yeah. Um particularly for people like
00:21:40.159 wild type for example you know you’re
00:21:42.080 being diagnosed really late in life
00:21:44.559 >> where you think that you are going to
00:21:47.760 enjoy the fruits of your labor
00:21:50.559 >> you know you want to go for holiday or
00:21:53.440 you know you’ve got your grandkids to
00:21:55.280 look forward to
00:21:56.559 >> and then you all of a sudden you’re
00:21:58.559 diagnosed with this condition
00:22:00.320 >> and and you have no idea what it is
00:22:02.400 because you know and I can only speak
00:22:04.320 from a New Zealand context um it’s not
00:22:07.520 well known.
00:22:08.400 >> Yeah.
00:22:08.720 >> You know, you they are in clinic and
00:22:10.480 they are told that oh I you’ve got wild
00:22:12.320 type wild type amidosis and what you do.
00:22:16.159 >> So I I I think um the
00:22:20.960 ability to
00:22:23.280 be open
00:22:25.840 to talk about what you’re going through.
00:22:27.919 >> Yes. because it’s so new, you know,
00:22:31.039 people forget
00:22:32.240 >> correct
00:22:33.039 >> that wild type
00:22:35.840 >> is only really been
00:22:38.000 >> discovered or whatever you want to call
00:22:39.679 it
00:22:40.320 >> in the last 5 years or less
00:22:43.039 >> and it’s because of the diagnosis the
00:22:45.039 machine that is now available.
00:22:46.880 >> Yeah. And also people are living longer.
00:22:48.880 Correct. and you know and in males. So
00:22:53.120 from that point of view, if you get
00:22:55.039 diagnosed, you’ve got to be kind of it
00:22:57.280 is so difficult to be positive at that
00:22:59.200 moment in time. But what you have to
00:23:01.600 think is that you have to that’s a very
00:23:03.919 good thing about talking to other people
00:23:05.440 in a similar situation because you know
00:23:08.400 >> we as hereditary types,
00:23:10.480 >> you know, we’ve lasted far longer than
00:23:12.320 we expected.
00:23:13.200 >> Very true.
00:23:13.840 >> And I think they have to take the same
00:23:17.039 >> situation that look back to us to say
00:23:19.360 because they can do the same. Yeah,
00:23:21.919 >> but they have to be positive. And the
00:23:23.760 fact that okay, you’re later in life and
00:23:25.919 you want to do things and you hoped you
00:23:27.919 could do things, you can, but you can
00:23:30.000 still do things,
00:23:31.520 >> but you you need to do it differently,
00:23:33.919 slower or
00:23:36.080 >> or or do change the way you think of
00:23:38.720 life because
00:23:40.159 >> you can’t do things. And I have the same
00:23:42.080 thing with my wife, with Lucy,
00:23:44.880 >> you know, because of all the things that
00:23:46.400 are going on in your your body. You have
00:23:49.679 to do things different like pick up a
00:23:51.039 cup. You can’t take two cups. You got to
00:23:52.880 take one cup.
00:23:53.840 >> If you if you’re cooking or you’re
00:23:55.520 walking around, you’re concentrating on
00:23:57.840 trying to walk. So, you haven’t got the
00:23:59.840 ability
00:24:01.039 >> or the focus on doing anything else
00:24:03.360 >> to pivot and do.
00:24:04.559 >> Yeah. So, people have to you have to
00:24:06.480 tell these people that cuz you don’t
00:24:08.799 look much different.
00:24:10.080 >> Exactly. So they need to know that
00:24:12.400 >> and that’s helped a lot.
00:24:15.360 >> And to be truthful
00:24:16.880 >> cuz if you say you can do something and
00:24:18.720 you can
00:24:19.600 >> then they won’t trust you.
00:24:20.799 >> No.
00:24:21.120 >> So you need to be open and say
00:24:23.440 >> and I’ve learned that the hard way.
00:24:25.120 >> Sure.
00:24:26.320 >> And Lucy, you get told off.
00:24:28.640 >> Yes.
00:24:29.120 >> Um
00:24:29.919 >> in love, in kindness.
00:24:31.039 >> In kindness. And then you know and
00:24:33.120 sometimes you have to be cruel to be
00:24:34.720 kind as I said before. Agree. and and it
00:24:37.120 it you know it’d be great if you could
00:24:39.520 be looked after full time but that’s not
00:24:42.000 very
00:24:42.480 >> that’s not the reality of life.
00:24:43.600 >> It’s not and if you don’t do things
00:24:45.520 yourself
00:24:46.480 >> and look at things but you have to look
00:24:48.080 at things differently and especially if
00:24:50.080 you’ve been somebody very active in your
00:24:53.120 life and sudden you can’t do it. You
00:24:55.120 have to look at other things that would
00:24:57.039 you enjoy
00:24:58.480 >> like you know going to the cinema or
00:25:00.799 going to play uh snooker or something
00:25:03.520 which is not so physical anymore
00:25:05.679 >> but it gets you out the house.
00:25:07.200 >> So true.
00:25:07.919 >> And always ask for help. Don’t be
00:25:13.120 >> don’t do it because you think other
00:25:15.360 people think that
00:25:17.039 >> you’re asking too much. Never think
00:25:19.039 that. Just think that
00:25:20.880 >> all people in my
00:25:22.799 >> Yeah. uh life of you know
00:25:25.679 >> have always been very helpful if you
00:25:27.760 tell them the truth.
00:25:29.039 >> Yes.
00:25:29.440 >> So and and you ask for help.
00:25:31.520 >> Yes.
00:25:31.919 >> Uh and and that’s what I do. You get get
00:25:34.159 used to that.
00:25:34.880 >> Yes.
00:25:35.279 >> Um but never cry wolf.
00:25:37.760 >> No. Okay.
00:25:38.480 >> No.
00:25:38.960 >> Cuz it’s so it’s like anything really,
00:25:41.120 isn’t it?
00:25:41.600 >> Just basically don’t be a drama queen.
00:25:43.520 >> Yeah. And you know if you’re a hard work
00:25:45.600 have been a hard work like you were
00:25:47.120 saying in use a lot of farmers. You
00:25:49.279 know, I I met a guy in Ireland who was a
00:25:52.799 farmer and he had a wild type and we
00:25:56.480 talked a lot about being on the farm and
00:25:59.279 everything and he’s had to relinquish
00:26:01.840 what he’s had to do to his son.
00:26:04.240 >> You know, you have to do that. You have
00:26:06.400 to otherwise you won’t survive.
00:26:08.799 Something will happen.
00:26:10.000 >> Correct.
00:26:10.480 >> Whether it be something simple that you
00:26:12.320 fall down or you’re you’ve done too
00:26:14.480 much. Yes. Because like hereditary and
00:26:18.320 wild type
00:26:19.279 >> Yeah.
00:26:19.919 >> And we’ll come on to this about
00:26:21.520 exercise, the importance of looking
00:26:23.360 after your body.
00:26:24.480 >> Yes.
00:26:24.960 >> Um is very important.
00:26:27.200 >> Yes.
00:26:27.840 >> Um because if you don’t do that,
00:26:30.720 >> Yeah.
00:26:32.000 >> then you’ll be gone and somebody will
00:26:33.919 miss you.
00:26:34.400 >> Agree. Agree. So I like we’ve touched so
00:26:37.200 much just know just chatting about this
00:26:39.760 um
00:26:40.559 >> you know the importance of communication
00:26:42.720 the importance of knowing your abilities
00:26:45.840 the importance of um being open about
00:26:49.120 your capabilities
00:26:50.880 >> and um finding strength in your present
00:26:54.960 condition
00:26:56.320 >> um and also understanding that there
00:26:58.640 will always be people around you who are
00:27:01.200 just looking to help you but so don’t
00:27:04.159 pull back because of you know whatever
00:27:06.960 personal reasons and be because just
00:27:09.760 trust that
00:27:11.120 >> they are there for you and they rather
00:27:12.880 you say something
00:27:14.480 >> yes
00:27:14.880 >> about that you’re not able to do it than
00:27:17.279 you trying to act as though you can
00:27:20.080 >> when you can’t.
00:27:21.039 >> Yeah.
00:27:21.440 >> Um
00:27:22.559 >> so I it’s a it’s a it’s a segue into
00:27:24.880 what we’re going to
00:27:26.000 >> you know finish talking about which is
00:27:29.679 >> exercise. It’s like in in our past
00:27:33.200 conference we we had Ellen come and talk
00:27:35.200 about exercise and one of the things
00:27:36.960 that the patients that attended the
00:27:39.120 conference was very surprised is that
00:27:40.880 exercise I know one person said oh I
00:27:43.520 thought exercise was you know doing the
00:27:45.440 Jane Fonda workout but it’s not is it
00:27:48.720 like to tell me what exercise and what
00:27:50.960 actually what helps you
00:27:53.200 >> it’s really you know like like all the
00:27:56.159 changing things within a monolidosis on
00:27:58.640 your journey things change.
00:28:00.320 >> Yeah,
00:28:00.799 >> things always change are changing, you
00:28:03.440 know, not necessarily in the right
00:28:05.120 direction, whatever direction. So, but
00:28:08.000 I’ve noticed and and I’ve been
00:28:09.760 exercising for the last 10 years really
00:28:12.480 near since I was um diagnosed.
00:28:16.799 >> But what you’ve got to realize is that
00:28:19.279 with the the disease, it’s muscle muscle
00:28:22.960 wasting. It’s uh you know there’s other
00:28:26.399 things and and wild type people have
00:28:28.559 similar problems because you you’re not
00:28:30.880 you think oh I can’t go and pick that up
00:28:32.880 or or pick this up.
00:28:34.559 >> So what you have to do and and we’ve
00:28:37.039 worked on that is to do exercise so you
00:28:41.200 can go do the daily tasks that you would
00:28:43.760 normally do.
00:28:44.880 >> It’s not about losing weight because we
00:28:47.200 all know especially on the hereditary
00:28:49.440 you don’t have to lose weight because
00:28:50.640 the disease does it for you.
00:28:52.080 >> Exactly. So, you know, I’ve never had to
00:28:54.640 had to to do that. So, but on the other
00:28:57.200 hand, you’ve got to really
00:29:00.559 look at your body and say, "Look, I need
00:29:02.799 to carry the bags from the shopping from
00:29:05.919 my car. I have to get off the loose
00:29:08.320 seat, you know, and I have to walk over
00:29:11.600 to there, even though it’s only a what,
00:29:14.000 a few meters.
00:29:16.240 >> How am I going to do that? My heart’s
00:29:18.240 not fantastic, you know, your legs and
00:29:21.120 everything." So, you’ve really got to
00:29:22.640 say the only way you’re going to be able
00:29:24.640 to do that long term.
00:29:30.080 >> Have a cup of tea.
00:29:31.520 >> Nice cup of tea. Sorry.
00:29:35.120 Never say no to So, so the best thing to
00:29:38.880 do, what you’re trying to do is to do
00:29:41.600 exercises that will keep you going on a
00:29:44.399 normal basis. So, what I do, um, I used
00:29:48.559 to go to the gym, but that was more
00:29:50.559 cardiac. side. You can’t do that because
00:29:52.559 of heart failure
00:29:54.320 >> and also with neuropathy. You can’t do
00:29:56.240 that. So
00:29:57.440 >> what we do now is we do we build muscle
00:30:01.039 mass because if you don’t use it, you
00:30:03.279 lose it.
00:30:04.240 >> And if you sit down all day,
00:30:06.480 >> your muscles in your legs and everything
00:30:08.240 around here. So what I concentrate on or
00:30:12.799 Alan and I concentrate on is upper body
00:30:16.720 and lower body in between the two. But
00:30:20.240 also some days when he may come and I’m
00:30:23.279 not quite with it.
00:30:24.640 >> So you can’t do the major lift, you
00:30:28.720 know, lifting a weight sat down or bands
00:30:31.679 and I get bands. And also one of the big
00:30:34.000 things is that if you have stairs in
00:30:37.120 your house, it’s very easy to do
00:30:40.000 push-ups up the stairs and it’s only,
00:30:42.880 you know, little and often,
00:30:44.640 >> you know, if you’re going up the stairs
00:30:46.000 several times a day, and we do find it
00:30:48.000 hard is you do five.
00:30:49.760 >> Yeah.
00:30:50.159 >> And so it’s little and often or if
00:30:51.919 you’re, you know, doing exercise with a
00:30:54.000 band and you just pull the band over
00:30:56.640 here like that. It’s all this muscles
00:30:58.960 here and here in your legs and just few
00:31:02.880 squats and lying down and do that and
00:31:05.440 you know with polyuropathy
00:31:08.399 >> and getting down and up from is very
00:31:10.559 difficult the floor so you can sit down
00:31:13.120 and do these exercises
00:31:15.360 >> and the other thing I’ve I’ve I would
00:31:18.000 recommend that I’ve only recently come
00:31:20.559 into
00:31:21.679 >> is to
00:31:23.919 you know
00:31:25.679 go through your inhibitions is about
00:31:28.320 doing things and just do it. So I go to
00:31:31.039 armchair yoga.
00:31:32.320 >> Yes.
00:31:32.720 >> Okay. Which is very been very important.
00:31:34.720 So
00:31:36.559 >> Allan for instance does all the upper
00:31:38.880 body and the major uh muscles.
00:31:41.600 >> Yeah. But what armchair yoga does,
00:31:45.039 >> it does wellness and all that as well
00:31:48.720 and and breathing exercise, but also it
00:31:51.360 does the minute
00:31:53.440 >> exercises that you would not have time
00:31:56.320 to do or know lifting your legs up,
00:31:59.600 moving your feet and sitting down, but
00:32:02.880 your your core body and everything like
00:32:05.440 that. and and also yoga po poses but not
00:32:11.039 on the floor
00:32:12.399 >> and and that just um oils all your
00:32:16.399 muscles
00:32:17.760 >> but you don’t tend to do too much you
00:32:20.240 know it’s not
00:32:21.679 >> you don’t get breathless or anything
00:32:23.200 like and also the wellness bit about the
00:32:25.840 breathing exercises and just being quiet
00:32:29.840 >> and mentally and everything it does
00:32:32.559 >> it does magnificently help you I That’s
00:32:35.919 very important to try and do both.
00:32:37.760 >> Yes.
00:32:38.480 >> But you have, you know, don’t if you
00:32:41.039 can’t do it some days and I find that we
00:32:44.399 do something else or we sit down and do
00:32:46.399 breathing exercises or bit tai chi, you
00:32:49.200 know, just the movements.
00:32:50.880 >> It’s just all about focusing your body
00:32:53.679 and also
00:32:55.200 >> uh with neuropathy and polyopathy, it’s
00:32:58.480 very important. Even though my legs
00:33:00.960 don’t work great, when you’re holding on
00:33:03.919 to a chair and you lift your legs up off
00:33:06.000 your, you know, I can’t do that well,
00:33:07.600 but it’s the point that your brain is
00:33:09.919 trying to get a signal to your feet to
00:33:12.880 do that.
00:33:13.840 >> That makes the whole difference.
00:33:15.840 >> So good.
00:33:16.240 >> So because your brain is trying to make
00:33:17.519 that connection all the time, if you
00:33:19.519 don’t do that,
00:33:20.640 >> it doesn’t it will forget.
00:33:23.279 >> So it’s so important to do regular
00:33:25.919 exercise and it doesn’t have to be much.
00:33:28.480 Yeah,
00:33:28.799 >> you know, even if you’re just stood
00:33:32.559 >> in the kitchen, you can just put your
00:33:34.159 hands on and lift your legs up or
00:33:35.679 anything like that.
00:33:36.960 >> Or in bed lying flat, you can push your
00:33:40.159 your knees up and in your muscle on on
00:33:43.200 your thighs and everything like that.
00:33:45.200 That all helps to all the things ready
00:33:47.760 for you when you want to walk or get up
00:33:49.840 a chair. Yes.
00:33:50.720 >> So, I can honestly say
00:33:54.080 >> if I hadn’t been doing that,
00:33:56.159 >> I still wouldn’t be I don’t think I’d be
00:33:57.840 able to walk that well.
00:33:59.039 >> No.
00:33:59.600 >> Unaded with a stroller. And I’ve met,
00:34:03.679 >> you know, it is so difficult. I’ve met
00:34:05.519 so many patients where
00:34:07.840 >> I’ve explained that to them and they
00:34:09.599 still
00:34:11.520 >> don’t want to do it.
00:34:13.440 >> And and and I was very difficult to get
00:34:15.839 through that mindset, but you have to do
00:34:17.440 that even if it’s just a little bit.
00:34:19.199 >> Yeah. And you know some people like most
00:34:21.520 people some people are very
00:34:22.719 self-disciplined and they can they can
00:34:24.879 do it themselves but I I’m not that sort
00:34:27.520 of person so I have to go somewhere to
00:34:29.119 do it or someone comes to me.
00:34:30.639 >> Yes.
00:34:31.359 >> You know and they and they kind of help
00:34:33.599 you because
00:34:35.199 >> not just pushing you a little bit but
00:34:37.760 also support because if you trying to do
00:34:40.879 something and you’re a bit unstable.
00:34:43.280 >> Yeah. Yeah. or they recognize the fact
00:34:46.079 that you shouldn’t be doing that today
00:34:48.000 because you did something
00:34:49.839 >> like cut the lawn or something
00:34:51.280 physically the day before. So, but I can
00:34:54.000 honestly say that’s one of the best
00:34:56.639 things
00:34:57.280 >> Yeah.
00:34:57.760 >> I’ve done.
00:34:58.960 >> Yeah. and continue to do.
00:35:00.800 >> And I I I’ll just summarize everything
00:35:02.880 by saying that um
00:35:06.640 intentionality
00:35:08.160 and the
00:35:10.480 positive attitude is what I believe um
00:35:14.000 keeps people going particularly when you
00:35:16.640 have
00:35:17.839 >> uh a terminal condition and you have to
00:35:20.160 agree at this point.
00:35:21.680 >> Yeah.
00:35:22.079 >> It is a terminal condition or it says
00:35:23.920 cure. Um,
00:35:25.920 >> it’s it’s a long term, you know,
00:35:27.440 >> is a is it drawn out,
00:35:29.280 >> drawn out and you know, and I just need
00:35:32.960 to say one thing
00:35:36.160 >> every morning when I get up,
00:35:38.240 >> I sit on the side of the bed.
00:35:39.920 >> Yeah.
00:35:41.200 >> And always thank God or whatever to say,
00:35:44.240 look, there’s people out there far worse
00:35:46.800 off
00:35:48.079 >> than you. Yes.
00:35:49.359 >> You know, at least I can get up. I don’t
00:35:51.359 have to rely on too many people.
00:35:53.200 >> Yes. You know, I can I can eat still. I
00:35:56.560 can do that.
00:35:57.839 >> You know, you see other people can do
00:35:59.839 anything. Exactly. And so, always
00:36:02.000 remember there’s always somebody far
00:36:03.760 worse off because that keeps you at a
00:36:06.400 level where you don’t feel
00:36:09.280 >> um sorry for yourself. Yeah.
00:36:11.520 >> Cuz it’s so easy.
00:36:12.640 >> High five.
00:36:13.200 >> High five.
00:36:13.680 >> Love you. I love you, too. Anytime.
00:36:15.920 >> Thank you.
00:36:17.920 >> Lots of other subjects. There’s lots of
00:36:19.599 lovely subjects,
00:36:21.040 >> you know.
00:36:22.880 You said so many