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PA mom
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| Joined: | Fri Jul 27th, 2012 |
| Location: | California USA |
| Posts: | 13 |
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Posted: Thu Aug 23rd, 2012 06:02 |
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My mother-in-law is 75 years old and has Parkinsons Disease. She has been living with her diagnosis for about 15-17 years. She still mostly takes care of herself, and even still prepares meals and does a little laundry. But she does no shopping or house cleaning, etc. She had the brain stimulation surgery on both sides of her brain a number of years ago. She has had asthma all of her life, but it's not that bad. I didn't even know about it until she told me one year. As far as I know, she is only on her PD medications, asthma inhaler, and just recently the doctor put her on Vitamin D!
How do you know when you are too ill for the MP to be worthwhile? Also, there is only 1 Parkinsons MP member who I am aware of, EpoxyJan, and according to his experience, Parkinson's is a stubborn bacteria to get rid of.
Are there criteria to help evaluate whether it would be worth the pain she will have to go through? She has taken a downturn the past couple of years, but I don't know if she would even consider the MP.
Any input at all will be appreciated!
PA mom
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MP not yet started (no breaks) | Psoriatic Arthritis, Psoriasis, Rheumatoid Arthritis, Spondylitis, poss. fibromyalgia (daughter) | pain, swelling of joints | last 25D= __ ng/mL (not tested yet)
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Aug 23rd, 2012 12:53 |
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PA mom. Well, it will take a while for the vitamin D to clear her system 
I am not so worried about the Parkinsons as I am about the comorbidities - all the other symptoms which will come to the fore if she commences therapy. It is really, really, tough to be successful with the MP unless you are yourself an active member of this community, and fully understand the decision you have made.
As for age, it doesn't seem to be a major factor. Most people on the MP report a re-invigoration of their lifestyle as they recover. I doubt Freddie Ash is contemplating imminent death, despite all his heart-bypass surgeries, and that he is pushing up towards 80 now  During my presentation to the Methuselah Foundation conference in 2008 I noted that most people die because of Th1 diseases, those we call "diseases of the aging," and once the threat of those is removed we are maybe adding twenty or more years to the average lifespan. It is just too early to draw any definite conclusions...
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minski2
Member
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Posted: Thu Aug 23rd, 2012 13:26 |
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Hi PA mom.......I'll be 80 in 6 months and have been on the MP for 3 years. It's not easy, but I was on the way to being bedridden or at the least in a wheelchair and that has not happened. My worst Lyme symptoms have improved 75%, but I still have other issues. As for the clearing of vitamin D, as soon as I stopped supplementing it dropped like a rock. I know that is not the case with everyone, but your mother-in-law may be one of us lucky ones! My age has been a concern , but I am so glad I didn't let it stop me. I had to convince my doc; she was not helping me and I was going down hill rapidly! I felt I had nothing to lose and could always stop!!
Dian(minski2)
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PTLDS,Hashimoto's Disease:INT.1-25D38,25D37;PH1Sept09,PH2Nov09,PH36/1/10 ;current 25D-6.3
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PA mom
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| Joined: | Fri Jul 27th, 2012 |
| Location: | California USA |
| Posts: | 13 |
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Posted: Thu Aug 23rd, 2012 16:12 |
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Thank you so much for replying!
Dr. Marshall, my mother-in-law doesn't use the computer at all. She likes to eat whatever she wants to eat. Both of those things would have to change, but she has computer savvy grandkids in and out of her house all the time. She is one of the most stubborn people I know, and has been fighting not to give in to her disease ever since she got it. Her strong spirit could carry her through if she and my father-in-law decide to try this. I understand what you said about being an active member of this community, and I will relay that to her, and help her with that if she goes forward.
Hi Dian, I know some people, younger than you, have debilitating IP. How was your first year? Did you still have any quality of life? When did you begin to notice improvement? That way I can pass on info. from someone close to her own age.
I so appreciate this.
PA mom
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MP not yet started (no breaks) | Psoriatic Arthritis, Psoriasis, Rheumatoid Arthritis, Spondylitis, poss. fibromyalgia (daughter) | pain, swelling of joints | last 25D= __ ng/mL (not tested yet)
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minski2
Member
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Posted: Thu Aug 23rd, 2012 16:35 |
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My quality of life is far superior to what I had before the MP! My first 18 months were actually easier than these last 18. I have done much healing, but the herxing or IP's are much stronger and for the most part I can't handle ABX any more. The MP says that is because my immune system is now fully functioning and I obviously have many more bugs to destroy. I really don't think I have a choice as I feel sure I would immediately go back to symptoms before MP and that was heading towards assisted care.
I hope she gives it a try. Don't hesitate to ask if you have any more questions about the MP and old age!!
Dian
 Read more >> Options >>
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PTLDS,Hashimoto's Disease:INT.1-25D38,25D37;PH1Sept09,PH2Nov09,PH36/1/10 ;current 25D-6.3
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leroybrown
Board Staff
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Posted: Thu Aug 23rd, 2012 18:45 |
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Dian - you go girl! 
Deb
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Life could be worse. Things could get bad. - Barney Bentall
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Ph1: Sept 29/09 benicar q8hrs * Nov 26/09 q6hrs *
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Sallie Q
Board Staff
| Joined: | Mon Jan 26th, 2009 |
| Location: | NSW, Australia |
| Posts: | 2074 |
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Posted: Thu Aug 23rd, 2012 21:39 |
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PA mom wrote: ''....are there criteria to help evaluate whether it would be worth the pain ..... a stubborn determination to see it through goes a long way, but capacity to understand the process is even more important.
New starters who wash out in the first year or so seem to lack one or both of those qualities.
Another thing is a personal MP supporter. Opa has Ron posting, Jason has John posting, There are a handful of others, I think, where the patient is unable to sit at the computer (or use one at all)
Someone (non-medical) I met used to make 'house calls' (an Aussie reference to old style doctors who would come to your house instead of expecting you to get yourself to a hospital in emergencies), very good for helping set up with mood lighting and establishing a retreat room, supporting person through bad patches and more importantly prepared to go to the hospital if necessary and present all the Olmesartan information to the emergency and aftercare teams. Do you live down the block or across the time lines?
Sallie
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MP Sept'08|depression'70, breast cancer'90, BCC/Bowens?'02, Sjogrens'08| Sx stroke,CFS,mild RA, migraine, glare->neuro| 1,25=31pg/ml & 25D=7ng/ml(Dec'12) (MP conferences) MP break: Olm.20q8h, M100
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PA mom
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| Joined: | Fri Jul 27th, 2012 |
| Location: | California USA |
| Posts: | 13 |
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Posted: Thu Aug 23rd, 2012 22:01 |
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My husband and I live an hour away, so I could be there...within the hour. But my father-in-law has educated himself on her Parkinson's, and he drives her to her doctor appointments which are all between 1-3 hours away. He doesn't do the computer either, but he's a smart guy and we'll take it a step at a time. I can definitely help them understand everything.
If they did end up going for it I could see them getting a computer (I have 4 nieces that live close by and can help them with the computer). I appreciate your response, and I'm taking note of everything you guys say.
A big obstacle that I can see is that there are no Parkinson's patients who have shown consistent and measurable progress on their Parkinson's symptoms. I know EpoxyJan has shown unbelievable improvement in his writing, but it remains scary that the MP will ramp up some of the PD symptoms and that they will never come down. I don't know if my in-laws will even consider this. I just want to present it to them.
I myself am convinced that the MP works, but I would pause before I tried it, if I had Parkinsons, I think. I mean, what if there are other factors involved in Parkinsons that the MP doesn't address? Without a scientific or medical background I don't have the confidence that Parkinson's is Th1 and that the MP will eventually work on it. But, the way she's going, it's a ray of hope.
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MP not yet started (no breaks) | Psoriatic Arthritis, Psoriasis, Rheumatoid Arthritis, Spondylitis, poss. fibromyalgia (daughter) | pain, swelling of joints | last 25D= __ ng/mL (not tested yet)
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Aug 24th, 2012 05:01 |
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The primary reason we don't have many members with Parkinson's is that they are usually told by their physicians that there are excellent medicines to treat Parkinson's, and they need not worry themselves about the diagnosis. There is no way we are going to argue against lies like that
There actually are many members who recovered from 'early Parkinson' tremors, etc, associated with some other diagnosis, but don't make a big song and dance about it.
..Trevor..
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wrotek
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| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1968 |
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Posted: Fri Aug 24th, 2012 07:06 |
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Dr Trevor Marshall wrote: The primary reason we don't have many members with Parkinson's is that they are usually told by their physicians that there are excellent medicines to treat Parkinson's, and they need not worry themselves about the diagnosis. There is no way we are going to argue against lies like that
There actually are many members who recovered from 'early Parkinson' tremors, etc, associated with some other diagnosis, but don't make a big song and dance about it.
..Trevor..
Dr Marshall, do we have at least one D-metabolite test from Parkinson patient blood ? It would be nice to see Parkinson patient get better. I once emailed Michael J. Fox Foundation, but did not get a response. Looks like foundation is doing well, raising all that money, but too bad patients are not as well.
Even Dr Lida Mattman said that Parkinson Disease is very rare compared to other neurological disorders.
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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leroybrown
Board Staff
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Posted: Fri Aug 24th, 2012 12:30 |
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It's unfortunate that foundations only need to spend 6% or 8% of the funds that they raise on actual research or helping patients. (I forget the exact amount but it is very low).
Deb
____________________
Life could be worse. Things could get bad. - Barney Bentall
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Ph1: Sept 29/09 benicar q8hrs * Nov 26/09 q6hrs *
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wrotek
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| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1968 |
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Posted: Fri Aug 24th, 2012 12:48 |
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Where the rest money goes ?
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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leroybrown
Board Staff
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Posted: Fri Aug 24th, 2012 13:06 |
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Salaries, rent, whatever they want to spend it on.
Deb
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Life could be worse. Things could get bad. - Barney Bentall
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Ph1: Sept 29/09 benicar q8hrs * Nov 26/09 q6hrs *
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wrotek
Member
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1968 |
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Posted: Fri Aug 24th, 2012 14:19 |
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Wheelchairs for MS folks... So i've heard
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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EpoxyJan
Member*
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Posted: Mon Aug 27th, 2012 21:18 |
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PA mom wrote: ......but it remains scary that the MP will ramp up some of the PD symptoms and that they will never come down...........
..... I mean, what if there are other factors involved in Parkinsons that the MP doesn't address? Without a scientific or medical background I don't have the confidence that Parkinson's is Th1 ......
PA mom,
I indeed noticed a ramp-up of PD symptoms initially when I started the MP, now 4 years ago, but these additional symptoms gradually ramped-down again in the years thereafter.
Before I started the MP my 25D was 16 ng/mL and my 1,25D was 65 pg/mL. The first value was lower than the Dutch average, but the second value was definitely much higher than normal. Also the ratio between the two values (4) was much higher than normal (<2.5). For me this was a clear sign that I got a Th1 disease and this convinced me to start the MP.
Maybe the MP is not able to stop the Parkinson progression (I still have hope though!) but it may well prevent all the other nasty diseases which come together with PD (comorbidities).
Sincerely, Jan
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Parkinson's end2006,Ph1Sep08,Ph2Feb09,Ph3Feb10, NoIR when bright sun,125D65,25D16(Aug08)25D7(Nov08)25D4.8(Feb09)25D10(July09)25D9.6(Jun10) 25D6.4(Sep11), Park.meds started Nov09(L-dopa/Carbidopa)
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