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KeirasMom 07-13-2013 07:11 PM

Parkinson's Disease
 
Does anyone here have experience with Parkinson's? DMIL was just diagnosed, and I don't really know much about it. She's quite young at 57 (I think!). There's no family history that she knows of, but she was exposed to pesticides quite a lot as a child in the country. I know I could post this in the medical issues section, but my JUDDD BUDDDs know so much, I figured I'd come here first! :D I will also be Googling, but sometimes I make myself crazy with TOO MUCH information.

laceylady 07-13-2013 07:41 PM

Dad's had it for years -- they didn't technically put a name to it until about 10 years ago (previously it was "the shakes") -- and he's 88 years old. I have no idea what may have caused it, but he seems to be doing 'well enough' dealing with it. He has balance issues, and is now using his walker all the time, and of course there's the problem of his hands shaking so badly that sometimes he has a hard time eating but he manages to finish his meals. His mental abilities are still pretty good. But now that he's not as stressed as he used to be (family issues) his symptoms are less severe. I've heard that DANCING seems to help people with Parkinsons, but Dad has never really been a dancer, especially since Mom died 3 years ago. I'm sure you'll find lots more information on-line, and there are organizations (Michael J. Fox's for example) that are very informative. Good luck -- I know it's difficult.

DianeDelgado 07-13-2013 07:42 PM

Wow, Dawn...I just got back from my parents. My dad was diagnosed with Parkinsons about 15 years ago (he is 79 on 9/3, we share the same birthday). He is definately in the advanced stages, and I go down every weekend I am not in Portland to see him and give my mom a hand. He advanced very quickly 5 years ago...but, he had colon cancer and lung cancer surgery within 6 weeks. He is now in a wheelchair completely, and has trouble with swollowing. There are so many different types of symptoms. My dad's mind is totally there...he still gets the Jeporday questions, and can tell you all the stats for the Giants (losers), but his body has given out. I have hired my cousin to help my mom out, because his everyday care is getting really taxing. I would be happy to talk more about our experince if you would like. It seems to definately be enviornmental. A PD support group my parents used to attend in Vallejo had 5 men from the same shop from Mare Island that had PD...come on! OH...one thing I will tell you is med management....crazy! It really is totally up to the paitent (or care givers) to figure out what works. My dad had horrible reactions to some (violent dreams with yelling).
I can talk to you off line if you would like.
Diane

SlowSure 07-14-2013 01:56 AM

I'm sorry to learn this news and for its probable impact on your family.

As per the others - it's variable in how slowly (or otherwise) it progresses and the degree of change it entails.

57 isn't an atypical age for diagnosis (not that that helps).

I'm loth to mention this in some ways but there are people such as Dr Terry Wahl who has developed a WOE that has helped her to manage a neurological condition (in her case, progressive MS). She's given a TED talk and there's a fair amount of publicity about her. (I should mention that her therapeutic diet has changed beyond recognition so the date of her publications matters.)

Dr Mary Newport has received a lot of publicity for managing her husband's Alzheimer's Disease with MCT oil and CO supplementation (crudely - it's related to treating AD as so-called diabetes III and switching over to running the brain with ketones rather than glucose).

I'm apprehensive about mentioning it because I emphatically don't wish to imply that complex neurological disorders can be amenable to management with diet. And, I've not evaluated either the Wahl or Newport protocols. Nonetheless, I thought that maybe I should mention them.

Flossyliz 07-14-2013 03:08 AM

My father has had PD for about 15 years. It progressed very slowly at first and the shaking was just a minor irritation. It has only become a major inconvenience for him over the last three years - he's 87.

His mind is pretty clear but his body can be very frustrating. He has a whole range of PD symptoms that come and go throughout the day. The worst is when he freezes and can't move at all. That's when he's most likely to fall. He moved into a care home last winter and is much happier and more relaxed, knowing help is always at hand, so that's working well.

He's done well with the prescribed drugs but the dose has increased over the years. He's now maxed out on his meds and gets pronounced dyskinesia as a side effect. This doesn't bother him, as it happens when the drugs are at their peak, which means he has dopamine in his system - it's the happy molecule! When he's shaking, the drugs are at their lowest and the lack of dopamine makes him morose.

Wrong country for you but there's lots of very useful and supportive info here: Parkinson's UK

Methylcobalamin (a form of vitamin B12) has been found to help slow the progression of PD. It's good for older people to take anyway, as it can help prevent altzheimer's. Astaxanthin might be worth taking too.

My main advice would be for DMIL to stay as active and sociable as possible. Movement helps to keep the brain healthy. Also PD is very disempowering and it's important to feel useful.

I hope DMIL's PD progresses slowly. Dad's had a very healthy life up to the last few years and at 87 that's pretty good going!

E.W. 07-14-2013 06:32 AM

Gere is an article you may want to look at. It starts off talking about eplipesy but later
talks about parkensens and alhimers. You may also want to do a google search on parkinsons and coconut oil.



Neuroprotective and disease-modifying effects of the ketogenic diet

KeirasMom 07-14-2013 06:41 AM

Thank you for all the responses. DMIL is VERY active. She exercises a couple of times per day, walks like crazy, uses her elliptical, and has a very active social life. She's very fit. She seems to be doing well. I'll look into those resources. Diane, I may have questions once I've done some more research. All of your personal experiences are very helpful!

SlowSure 07-14-2013 06:44 AM

The paper EW cites is one that I used to make my decision about the modified ketogenic WOE that I currently follow for migraine control.

laceylady 07-14-2013 06:51 AM

Quote:

Originally Posted by Flossyliz (Post 16514160)
His mind is pretty clear but his body can be very frustrating. He has a whole range of PD symptoms that come and go throughout the day. The worst is when he freezes and can't move at all. That's when he's most likely to fall. He moved into a care home last winter and is much happier and more relaxed, knowing help is always at hand, so that's working well.

Dad's situation is quite similar -- and what you wrote enlightened me. Dad's been in "Assisted Living" since September of last year. We've wanted him to come and live with us but he's very hesitant about it. We thought it might be because our accommodations aren't as 'handicapped accessible' as he probably needs, but we have made many adjustments for him. But when you wrote that your Dad knows "help is always at hand", it made so much sense. My DH and I both work, so Dad would be here alone. And that probably DOES scare him not having immediate help. So thank you for putting that information into your reply. I think I finally get it. It truly ISN'T about not wanting to be with us. It's about his safety which is first and foremost. I get it!! :jumpjoy: Thanks!!!

Demonica 07-14-2013 07:02 AM

My aunt has it, but I don't see her that often. I think my grandfather may have had it because I remember him having "the shakes" really really bad.


You would not believe the story I was told about where those "shakes" came from:rolleyes: I was told that he had the shakes because he was an alcoholic and it went into his system and caused it. *rolling eyes so hard that I can see the back of my head*:rolleyes:

KeirasMom 07-14-2013 07:21 AM

MIL's started out as shaking in one hand, but it was as she was dealing with a rotator cuff tear on the same side, then the subsequent surgery and recovery. The thought was that she had nerve damage. Her doctors ran every test under the sun trying to RULE OUT Parkinson's, but she was finally definitively diagnosed on Friday. She'll be seeing a specialist in August, and will undergo more testing, but expects the same result.

As an aside: DH doesn't know his father, so we don't have any medical history on that side. My mother was secretive about her health, so that's limited as well. I worry about my daughter. I've said it before, and I'll continue to say it, please please please share your medical issues with your family. My own issues would have been diagnosed much more quickly if I had known of a family history. (Off my soapbox!)

I knew I could count on my JBs for support and wisdom. You people are AMAZING! :love:

DianeDelgado 07-14-2013 07:44 AM

I do know stress has affect on symptoms. Another thing that we know is that you have to be diligent when it comes to medication management. It seems that there has to be changes made every few months on dosage and timing. I completly agree with everyone about staying active as long as possible. My dad seemed to decline quickly when he couldn't exercise after his surgeries and subsequent complications. Safety is very much a concern, because falling possibilites are substancially increased. Also, there seems to be a wide range of syptoms that people experience; my friend's father has more of the "shuffle" and speech issues, then the "freezing" dad experiences. There are also some very good support groups that address different issues every month. I have enjoyed attending, and hearing "real" information.

Flossyliz 07-14-2013 08:15 AM

Glad to help Lacey. We'd talked about Dad coming to live with us but he looked horrified even at the mention of it. He's better off where he is. DH and I are also getting our own heath back after shouldering all the responsibility for a couple of years. It became exhausting - even though he didn't live with us and four carers per day were going in to help him with getting up, meals etc.

Dad is assessed regularly by a PD specialist, who tweaks his meds and offers advice as appropriate. Every patient is different. PD is more like a syndrome.

E.W, I'd forgotten about CO! Thanks for flagging it up. We got Dad using that while he was at home. He's not very good at taking responsibility for his own health so that was a major coup!

Diane is right. When he's stressed, his symptoms are tremendously exacerbated.

jrudq 07-14-2013 11:30 AM

Sorry to hear about the diagnosis. It is especially scary when it comes out of left field - and when it is a seemingly fit and healthy person to boot.
Parkinson's runs in my family, unfortunately. Starting with a great uncle, my aunt, my mom, and most tragically, a cousin. All but my cousin developed the disease later in life and the course of it was variable. My mom was diagnosed in her early 70's. Until recently, and she is 87, it was well managed by medication. Coupled with just being really old (as she says, older than dirt!), it is now taking its toll physically and mentally.
My cousin was diagnosed in her late 30's...the worst kind of diagnosis. She had the brain surgery and it did not go well for her. She sadly died at 58.
Every year they are learning more about this disease and its treatment. I think being healthy and active is vital to its course and working with a Parkinson's specialist - not just a neurologist. If yours is like mine, the meds worked really well and for a very long time. Here is hoping that is the case.:aprayer:

Silverrain 07-15-2013 05:53 AM

My boyfriend's father has this disease. He was diagnosed about 20 years ago, and he is now in the advanced stages. He cannot walk without a walker, and he should really be confined to a wheelchair as he has problems with falling. He cannot stay on his own anymore due to the falls, so my boyfriend watches him one night a week while his mother is working (she is a nurse who works nights), and a hired nurse is with him the other nights. As others have said, his mind is totally there - it's just his body he cannot control. Sad thing is, I think my boyfriend is beginning to exhibit some early symptoms of the disease. I'm worried for him. He's only 33, and his dad was also diagnosed early on in life.

Flutter 07-15-2013 08:58 AM

Awww, Dawn!!! :hugs: I'm so sorry MIL has this dx! I don't have any personal experience here but know how gut wrenching it is having someone you love going through something so difficult. Sending lots of love your way!!! :heart:

LoCarbGal 07-15-2013 09:13 AM

Dawn, you're a loving DIL to be searching for answers for her like this. I :aprayer: for slow progression and effective treatment for her.

For all of you who have posted about your family members or friends suffering from this disease (and those who haven't posted) :hugs: and :aprayer:.

pooticus 07-17-2013 08:22 PM

Wow hun so sorry to hear of your MIL dx!!!

My mom had it for over 30 years. It's a pretty brutal disease. I would say get support systems in order. Even support groups.

I've hear good things about the MCT oil/coconut oil. Also have heard some great things about intermittent fasting especially when it's combined with calorie restriction and protein restriction.

Above all, having a good team of docs and nurses is important!!!

Saying prayers here too!

Jen sorry about your bf's dad and about your bf's symptoms!!


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