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  • My husband has struggled with constipation for many years, probably 15 years now. He used to eat Nu-Lax (senna, fig, dates) – worked well, but the texture wasn’t very unpalatable. We then found pure Senna leaf. 100% leaf made into tea (2 pinches) with also addition of fruit tea which takes the bitterness away. Non caffeine. Both products natural, not premade in bags – twice a day afternoon and before bed. This has kept his bowels moving regularly every 2 to 3 days for years.
    Also like Jerry, about 5 years ago added Colace – 1 x 30mg pill in am and one in pm. The softener not the laxative type.

    He has always been a big fruit eater, and fibre. He still eats prunes, probably 5 or 6 a day but they alone do nothing for him. If he misses a tea for some reason, he pays for it which is really not nice.

  • julesbunny

    Member
    June 19, 2023 at 1:43 pm in reply to: Who are you in relation to your person with Parkinson’s?

    Hi, I’m the wife of my wonderful husband, he is 61, we both are actually, and he has had PD for 25 years now, YOPD. The symptoms of PD are well controlled with DBS, but speech and gait (falls) are by far his worst symptoms that have become worse in the past 2 years. Progression we feel.

    I find it awfully difficult to read sometimes and understand how husbands/wives (as above, with no prejudice) say they are now a caregiver + + + and don’t feel like a wife/husband any more. I say difficult, because I am lucky that my husband is still very independent, but it scares me to think that one day, I’m going to be saying the same thing.

    I really feel for you all, especially to be feeling this major loss in your lives. You are still their wife, their husband, you love them and they you. I honestly have no idea what I’m really asking, except I can’t fathom not feeling together as a couple, until the end. Apologies if this reads critical, its not meant to, I’m just trying to understand how this awful disease takes…and I also want to pass on that you are all saints for what you do. Funnily enough, I’ve been called that last year by a friend, to which I said no, it’s what any wife would do for her husband and vice versa. It seems I have a lot to learn still with this disease, and what may be coming down the track.
    Warm regards

  • Great question. My husband wears 2 sets of knee pads and they are quite thick. He has 10 to 15 falls or potential falls a day and with these he stops the damage that comes with hard falls forward by probably quite some. He is 60 years old, has DBS, is overall pretty lucky in that falls are his worse side effect. Speech would be the second.

    The products were Deuser and Asics and bought from Germany and Spain, but I you can only get them from Europe. They aren’t skate boarding knee pads or elbow pads, they are quite different. The other styles can be bought on Amazon.com similar style: Soudittir, JYBTAA pads, Eulant, Rawxy Volleyball knee pads actually look like they could work, but they may be too soft. The knee when fallen on, really needs quite a double thickness. Incredible how they have helped him. He tried the hip pads too but they were too bulky and looked awful under trousers. They fit into most trousers, but not stovepipe jeans LOL.

    Anyway – just thought someone may not have thought of this if they are having falls. They really do work.

  • julesbunny

    Member
    March 2, 2023 at 3:25 pm in reply to: Constipation Treatments

    Its amazing how many different things for Constipation help so many people. It’s great that so many things do help. My husband is 60 and has had constipation issues for 15 years now, he was diagnosed when he was 38.

    What works perfectly like a clock for him now, every 3 days he gets total movement and emptying is the following:
    Exercises every day, and drinks a lot of water throughout the day
    He ats a lot of fruit, from Prunes to apricots, berries, bananas, apples, pawpaw) But we have found on testing, that when he stops these, it doesn’t change anything.
    Takes Colace Regular strength stool softener – 2 capsules per day (morn and evening)
    Fruit tea with Senna Leaf – 1 Tablespoon of leaves (has to be leaves as they are pure and organic and stronger than buying just tea bags that do not have the strength) and he drinks that in the afternoon and nighttime before bed.

    It works like clockwork. We have found on testing – that it’s the Senna leaf that is keeping him regular. All the additional things are mainly helpful and healthy, but the Senna leaf is the absolute necessity for him.

    Hope that helps if someone needs something different to try.

  • julesbunny

    Member
    September 12, 2023 at 9:36 am in reply to: How often do you see your neurologist?

    Oh my gosh – you have to be kidding. Can you not find yourself a new Neurologist. That sounds appalling.

  • julesbunny

    Member
    June 19, 2023 at 9:51 am in reply to: Who are you in relation to your person with Parkinson’s?

    Hi Marla,
    Your journey is sounding similar in some ways to my husband and I. I am his wife and he has the PD, 25 years now. Age 61. I was interested in what Meds your husband is on, in that it helped some with falls, which is a big issue for my husband, and speech.

    Hope things are evening out and that you are handling everything at present. Sorry delay in asking question but have only just logged on again.

  • julesbunny

    Member
    May 23, 2023 at 1:15 pm in reply to: Inbrija new medication

    It is available here in Spain yes, but from what we found out being on the Public health system, it’s not discounted so very expensive. Too expensive for us to bother with on top of the inhalation which my husband really doesn’t want to do. The Farmacia here wanted 1200 Euro for 60 tablets.

  • julesbunny

    Member
    May 23, 2023 at 1:12 pm in reply to: Inbrija new medication

    We have pretty much decided against it because of price and the inhaling…

  • julesbunny

    Member
    May 23, 2023 at 1:12 pm in reply to: Inbrija new medication

    Thanks Timothy….. Didn’t realise that.

  • julesbunny

    Member
    May 14, 2023 at 11:47 am in reply to: Inbrija new medication

    Interesting Jorge, the higher dose 42mg and the mix with Rytary. We can’t use Rytary as it’s not available but good to hear the Inbrija works well for you. Thanks.

  • julesbunny

    Member
    May 14, 2023 at 11:45 am in reply to: Inbrija new medication

    Thanks Nancy, interesting to read re the coughing. It’s something my husband was concerned about as well, inhaling powder into the lungs…

  • julesbunny

    Member
    May 2, 2023 at 10:44 am in reply to: Sinemet dosage

    Nice post Robert….. ditto in my thnking…. it’s what works for you.

  • julesbunny

    Member
    May 2, 2023 at 10:42 am in reply to: Sinemet dosage

    Hi Gerald, It all depends on the person. My husband takes 2.5 x 50/200 4 x daily and 1 x 25/100 4 times daily. He goes between taking these at 4 hour to 6 hour intervals depending on how much energy or “Spoons’ (The Spoon Theory) of energy he has exerted through exercise or meeting up with people during the day.

    If he leaves it until a 6 hour gap then he is normally quite ‘off’ as has probably forgotten to take them being in the middle of exercise or whatever. It makes such a difference what a person is doing, the hourglass gets drained, even though when we asked a Neurologist years ago about this, they said no… it doesn’t work like that. We absolutely do think it works like that, and told him he was wrong.

  • julesbunny

    Member
    May 2, 2023 at 10:38 am in reply to: Sinemet dosage

    WOW George, that’s amazing, to be able to drop Sinemet altogether. That’s where I feel there is a lack for my husband – decent programming or settings changes on the DBS.

    I am so pleased for you that you have been able to do that with the meds. I am not sure how old you are or how long you have had PD but would you share at all please.

    I can imagine my husband would love to take less, because when we have titrated down on the Sinemet his dyskinesias have always lessened, but unfortunately the on/offs have become worse so he gradually has had to increase again – progression probably.

    Anyway – happy for you !!

  • julesbunny

    Member
    May 2, 2023 at 10:26 am in reply to: Sinemet dosage

    That’s really interesting Laura…. cutting in half and spreading out more. My husband (61 yrs) has had PD a long time, over 25 years now and Young Onset, he has been on 2 types of Brand Sinemet since 2006 and now he is seemingly getting to the peak of how much he can take. Just over 2000mg per day…. The DBS implant for him in 2012 has not stopped an increase in medication needed unfortunately afterwards and so we are not sure what will be the thing to do if the dyskins get out of control. I really like this thought of spreading out during the day as he has heavy on/offs as well even with a helper of Comtan. Thank you x

  • julesbunny

    Member
    May 2, 2023 at 10:20 am in reply to: Sinemet dosage

    Hi Joanne, I’m not sure how old your son is, but my husband is Young Onset, had PD for over 25 years now, dx at 38 yrs. Once Young Onset always apparently. You haven’t mentioned how many of the mg your son takes 5 times per day… is it 1 x 25/250 and 1 x 50/200? As you say, we all do so much research and everyone is different to how they react and what they need. My husband takes 4 times per day – 2.5 x 50/200 pills and 1 x 25/100 pills also 4 times per day… That’s over 2000mg per day. For him it works and the Neuro says it is not that high. All comes down to tolerance I assume.

  • julesbunny

    Member
    May 2, 2023 at 10:07 am in reply to: Have you had to adjust your Levodopa dosage?

    Hi John, very interested in that you have been able to go down in Levadopa. My husband after DBS to GPI area in 2012, was able to at first reduce dosage a little but he is up to 2000mg per day of 200/50 CR (extended release) and 400mg per day of 100/25 Sinemet. It’s high supposedly for dose but apparently many people take A LOT more ‘mg’ than this.

    I’m really interested in the falls though you talk about being so much less. That’s fantastic. Do you really think it’s the less Sinemet? My husband is having around 10-15 falls per day and nothing helps AT ALL. We are trying physio therapy for falls, but it’s a nightmare. On other symptoms he is doing really well. Interested in anyone’s thoughts on falls. He is 61 years old and very mobile otherwise with exercise etc. Doesn’t make sense to us at all.

  • julesbunny

    Member
    May 2, 2023 at 9:54 am in reply to: DBS surgery forum

    Hi Linda, My husband is very skinny and tall and he said the implant, he can’t even feel it there, you just get used to it. You can see it on him because of his slimness, but its’ been no problem at all. He opted some years back to go for a rechargeable battery as well as he did not want to keep having anaesthesia to change it…. It’s worked out well.

  • julesbunny

    Member
    May 2, 2023 at 9:53 am in reply to: DBS surgery forum

    Hi Paul, you would be all turned on now from what You have said, so I hope it was a great success. i replied below to Norma Jean, so you can probably read there, but on the honeymoon period you mention, my husband also had a period like that also. He didn’t have tremor, but he had a few weeks where he felt ‘extremely normal’ with feeling like he had never had PD.

    He was awake for part of the surgery when he had it in 2012, and he also like one of the other ladies on here, thought it was not a great feeling to be awake, just weird, not painful at all, but it was necessary to get the best location of the implants. All the best.

  • julesbunny

    Member
    May 2, 2023 at 9:50 am in reply to: DBS surgery forum

    Hi Norma Jean,
    My husband has had Parkinsons 25 years plus now, dx at 38 yrs old, now 61 yrs. He had DBS in 2012, both sides, battery pack in chest, but changed it to a rechargeable 6 years ago. He had the implants into GPI like Paul above. My husband never had tremor, but it instantly stopped Dyskinesia which he was suffering quite badly due to length of time on the Sinemet. Going into GPI was from what I remember supposed to lessen the need for meds, but his med intake is up to more than it was before the DBS surgery unfortunately. He is tolerating it to a point, but Dyskinesias are slowly creeping back in. If he had to do it again, he would, but he thinks he would do it to the STN area, not GPI. Overall the DBS has been incredible. It has not helped his continual falls, or his worsening quiet speech unfortunately. He thinks the worst thing for him at this age is he isn’t eligible for barely any trials because of the DBS implant. He can’t remember he was told that before he had the surgery, as it may have changed his mind. Best health to all. x

  • julesbunny

    Member
    April 11, 2023 at 10:13 am in reply to: Twitches and Falls

    I’ve been thinking Robert about what you said about underdose/overdose and how that affects the falls. I can totally agree with the overdosing causes dyskinesias, kicking out and the underdose is all sorts of issues… I’ve been charting for the past 2 years the falls and meds taking. In the past 2 months nothing is clear though as to what makes him fall.. typical isn’t it.

    One thing is VERY clear from your post though. What you encounter in tight spaces is exactly what my husband has in shops/aisles/walking through doorframes to different rooms, hallways… but then the same thing happens in open space – like going through the lounge where he visually cannot see something he can fall onto or grab – it can set off a festering of the gait (the smaller steps) you talk about as well….. it’s crazy.

    God your fall sounded like it was painful – I hope you are better from that now…. the downhill or uphill is also an issue for my husband…. he doesn’t consider the counter balance of needing to lean forward or backward to effect the feet and balance himself.

    It’s like you say – now its unpredictable…. the last 3 days he has been fully ON and fully OFF at times and the falls have been worse, out of character backwards like he really is stuck in honey. I only just now caught him getting stressed to get out to a Parkinsons appointment for group physio and he just started falling backwards… luckily I was able to stop a heavy fall.

    Nothing seems to work at present to get this better – but I firmly believe getting his quad strength and core strength up has to do something.

    Thanks for sharing…..

  • julesbunny

    Member
    April 11, 2023 at 10:07 am in reply to: Twitches and Falls

    Hey there David, being a Kiwi myself, I actually chuckled (in a nice way) when you said your mate was in NZ. It’s interesting what you have said and I’m really glad you have found something that works for you.

    We don’t live in NZ at the moment we are in Europe, it has crossed my mind that things have been worse since we have been here for his falls – maybe it’s a longitude / latitude thing – but surely not LOL.

    My husband is like you, never gives up, but the falls are stealing his confidence and his brightness so I really hope I can help him with getting his leg and core strength up… we will see.

    I am intrigued enough to ask you, what machine. I’m sure you were expecting the question and I’m not sure if it’s something you are selling. Understand if you would rather not mention though. Things work differently for everyone, but if it’s something easy to attain and try would love to know.

    All the best and I hope you and your mate in NZ are doing well, it certainly sounds like it.

  • julesbunny

    Member
    April 11, 2023 at 10:00 am in reply to: Twitches and Falls

    Hi Rick,
    Yes we actually both do regular medical checks, eyes, ears etc and he had his checked only last year and all fine. Needed it for drivers licence.

    BUT on saying that – I will actually get him to get re-checked just in case.. .Thanks for the good advice 🙂

  • julesbunny

    Member
    April 6, 2023 at 10:47 am in reply to: Twitches and Falls

    Thanks Carol, they certainly are a bizarre thing. Fairly common it seems.
    It does make sense to me that also, the entire system could go down yes. That is what we wonder with the falls.

    Interesting again is as you say, the falls happen mainly at night getting to/from bathroom. He gets up quite a bit as well, but never does he fall at night. How bizarre it all is. 🙂 Thanks Carol

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