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Experiences with
D-bifunctional protein (DBP) deficiency
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Vitamin D deficiency
There have been several articles in the last few days mentioning the concerns of increasing numbers of people especially children that are feared will present with vitamin D deficiency in the coming months. People get the majority of their vitamin D through sunlight which converts the cholesterol found
There have been several articles in the last few days mentioning the concerns of increasing numbers of people especially children that are feared will present with vitamin D deficiency in the coming months. People get the majority of their vitamin D through sunlight which converts the cholesterol found
Lynxcat
in
Gluten Free Guerrillas
12 years ago
HAS ANY ONE CHALLENGE YOUR RITE TO MORE L-DOPA ?
I uses to take 40 L-dopa 125mg tablets a day .Then i got bad dyskinsia which I don't want again. Since then I had the DBS op after the op. I cut the L-dopa to 16 my self and I was very happy with my lot . THEN MY OLD NEURO CUT ME DOWN to 4 L-dopa 62.5mg i said no way could i manage . After 8 weeks
I uses to take 40 L-dopa 125mg tablets a day .Then i got bad dyskinsia which I don't want again. Since then I had the DBS op after the op. I cut the L-dopa to 16 my self and I was very happy with my lot . THEN MY OLD NEURO CUT ME DOWN to 4 L-dopa 62.5mg i said no way could i manage . After 8 weeks
export
in
Cure Parkinson's
12 years ago
Thunderstorms and Parkinsons
I had noticed when thunderstorm are in the area or striking,Having the feeling of a off time or just not feeling well,I had post this on similar site like this for question and answer for parkinsons.I thought i would get negative responces from people,But I really do feel sick with thunderstroms and
I had noticed when thunderstorm are in the area or striking,Having the feeling of a off time or just not feeling well,I had post this on similar site like this for question and answer for parkinsons.I thought i would get negative responces from people,But I really do feel sick with thunderstroms and
caseyjones
in
Cure Parkinson's
12 years ago
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post DBS
Several months have passed since I had deep stimulation of my brain. I ‘ve lost some in my speech but overall big improvements have been my gain. I can walk – almost run- like I have not been able to do in quite a few years, I am not freezing, stumbling, have no back aches and very few falling
Several months have passed since I had deep stimulation of my brain. I ‘ve lost some in my speech but overall big improvements have been my gain. I can walk – almost run- like I have not been able to do in quite a few years, I am not freezing, stumbling, have no back aches and very few falling
FifteenyearsPD
in
Cure Parkinson's
12 years ago
DBS adjusted as I had a spell in the doctor office
I must tell my good news, I have been having terriable freezing problems. SO upsetting . I saw my doctor and had a big spell in her office, as she adjusted the implants I gelt my right arm just unlock and i could raise it, then the left arm did the same thing, I have been spell free since 2 p.m yesterday
I must tell my good news, I have been having terriable freezing problems. SO upsetting . I saw my doctor and had a big spell in her office, as she adjusted the implants I gelt my right arm just unlock and i could raise it, then the left arm did the same thing, I have been spell free since 2 p.m yesterday
Kadie57
in
Cure Parkinson's
12 years ago
Mirapex 6 mg patch
Med problems can't get enough or the right combo to stop the freezing . I had DBS implants April 10 2012, yes it is still being adjusted I live 2 1/2 hrs. from the clinic and just started using a 6 mg patch I m fairly sure this is working because I know without my Mirapex I don't walk, then I take 2
Med problems can't get enough or the right combo to stop the freezing . I had DBS implants April 10 2012, yes it is still being adjusted I live 2 1/2 hrs. from the clinic and just started using a 6 mg patch I m fairly sure this is working because I know without my Mirapex I don't walk, then I take 2
Kadie57
in
Cure Parkinson's
12 years ago
Update on ice cream cones – very disappointed with Sainsbury’s
If you have been following my recent blog posts, you will know that I have been searching for the Barkat gluten free, dairy free ice cream cones. I approached the Barkat stand at the Allergy Show several weeks ago and they assured me they would be back on the shelves in Sainsbury’s very soon. I have
If you have been following my recent blog posts, you will know that I have been searching for the Barkat gluten free, dairy free ice cream cones. I approached the Barkat stand at the Allergy Show several weeks ago and they assured me they would be back on the shelves in Sainsbury’s very soon. I have
Feedingmyintolerantchild
in
Gluten Free Guerrillas
12 years ago
Should I have DBS or not?
I was diagnosed about 10 years ago. May 2011 I was in Lund to be accessed by a neurosurgeon. I have the shakes quite bad AT TIMES, not all the time, I take only about 1/3 of the total amount of Stalevo and Requip. Because of the waiting time I have begun to worry - do I really need DBS, the thought
I was diagnosed about 10 years ago. May 2011 I was in Lund to be accessed by a neurosurgeon. I have the shakes quite bad AT TIMES, not all the time, I take only about 1/3 of the total amount of Stalevo and Requip. Because of the waiting time I have begun to worry - do I really need DBS, the thought
Aussie
in
Cure Parkinson's
12 years ago
SWEATING A ROUND THE HEAD ?
HI I have started getting very sweaty a round my head . i was wondering if it my DBS ? your EXPORT
HI I have started getting very sweaty a round my head . i was wondering if it my DBS ? your EXPORT
export
in
Cure Parkinson's
12 years ago
Have you heard about a new Levadopa Gel?
' From the European Parkinsons Disease Association (EPDA) "A gel form of medication implanted in the smal intestine is more successful in reducing 'off' time in people with advanced Parkinson's, according to a new study at the University of Maryland. This may prove to be an alternative for more
' From the European Parkinsons Disease Association (EPDA) "A gel form of medication implanted in the smal intestine is more successful in reducing 'off' time in people with advanced Parkinson's, according to a new study at the University of Maryland. This may prove to be an alternative for more
Cerelia
in
Cure Parkinson's
12 years ago
follow up to DBS
It has been almost 3 months since I was "turned on" The difference is incredible. As my 5 year old granddaughter days - Mimi - "you are magical" On the other hand my 6 year old granddaughter asked me "how is your brain surgery going?" it tok me awhile to figure out that she though I had elected to
It has been almost 3 months since I was "turned on" The difference is incredible. As my 5 year old granddaughter days - Mimi - "you are magical" On the other hand my 6 year old granddaughter asked me "how is your brain surgery going?" it tok me awhile to figure out that she though I had elected to
FifteenyearsPD
in
Cure Parkinson's
12 years ago
follow up to DBS
It has been almost 3 months since I was "turned on" The difference is incredible. As my 5 year old granddaughter days - Mimi - "you are magical" On the other hand my 6 year old granddaughter asked me "how is your brain surgery going?" it tok me awhile to figure out that she though I had elected to
It has been almost 3 months since I was "turned on" The difference is incredible. As my 5 year old granddaughter days - Mimi - "you are magical" On the other hand my 6 year old granddaughter asked me "how is your brain surgery going?" it tok me awhile to figure out that she though I had elected to
FifteenyearsPD
in
Cure Parkinson's
12 years ago
I fall more now that I had DBS surgery
Every since the DBS I fall more, I m taking Carbadopa./ Leveadopa- reg and CR's Miripex reg and a CR. I m not sure what to think We having trouble find the right doasge with the meds and I am working weekly with the docotors I wondering if taking to much Mirapex could cause this?Wondering if anyone has
Every since the DBS I fall more, I m taking Carbadopa./ Leveadopa- reg and CR's Miripex reg and a CR. I m not sure what to think We having trouble find the right doasge with the meds and I am working weekly with the docotors I wondering if taking to much Mirapex could cause this?Wondering if anyone has
Kadie57
in
Cure Parkinson's
12 years ago
Has anyone on this website. who lives in United Kingdom had DBS
camper
in
Cure Parkinson's
12 years ago
Has DBS helped your depression/anxiety?
If not have the antidepressants been helpful afterwards?
If not have the antidepressants been helpful afterwards?
etterus
in
Cure Parkinson's
12 years ago
Home made carbidopa-levodopa syrup
I had a hour long session with my MDS Neuro yesterday. The bulk of the time was discussing dbs. He did mention a technique of grinding up the c-l dopa and mixing with water making a syrup to be sipped through the day.... the idea is to smooth out the on off dyskinesias. Anybody try this?
I had a hour long session with my MDS Neuro yesterday. The bulk of the time was discussing dbs. He did mention a technique of grinding up the c-l dopa and mixing with water making a syrup to be sipped through the day.... the idea is to smooth out the on off dyskinesias. Anybody try this?
etterus
in
Cure Parkinson's
12 years ago
I would like to know if anyone has had deep brain stimulation of the globus pallidus area instead of the subthalamic and results.
My doctors are recomending globus pallidus dbs for me to treat my parkinson's disease. I am 68 years old, and have tremors but no dyskinesias yet. I am on a lot of medication.
My doctors are recomending globus pallidus dbs for me to treat my parkinson's disease. I am 68 years old, and have tremors but no dyskinesias yet. I am on a lot of medication.
Jeanna
in
Cure Parkinson's
12 years ago
Anyone have dbs implants to treat parkison? ,
How do you regulate your meds and do you have freezing problems wirh your legs. I had surgry 4 10 2012 and have been told to hang in there the gift will be worth the confussion. I m so discourged.
How do you regulate your meds and do you have freezing problems wirh your legs. I had surgry 4 10 2012 and have been told to hang in there the gift will be worth the confussion. I m so discourged.
Kadie57
in
Cure Parkinson's
12 years ago
Anyone have experience filing SSDI.
I've been at this for over a decade and DBS and continue to work. Although I am very cautious and am psychologically sound in saying I am not giving up, I find my job becoming too strenuous and am (I can't believe I'm saying it) thinking about filing for Social Security Disability. Any helpful hints
I've been at this for over a decade and DBS and continue to work. Although I am very cautious and am psychologically sound in saying I am not giving up, I find my job becoming too strenuous and am (I can't believe I'm saying it) thinking about filing for Social Security Disability. Any helpful hints
Pelley
in
Cure Parkinson's
12 years ago
bilateral subthalamotomy: an alternative to DBS
Anyone have any knowledge of this procedure? It's been around since 2000 at least. "In this pilot study, bilateral subthalamotomy was performed on 18 Parkinson's patients at the Centro Internacional de Restauracion Neurologica (CIREN) in Havana, Cuba… Two years after their surgery, as a group,
Anyone have any knowledge of this procedure? It's been around since 2000 at least. "In this pilot study, bilateral subthalamotomy was performed on 18 Parkinson's patients at the Centro Internacional de Restauracion Neurologica (CIREN) in Havana, Cuba… Two years after their surgery, as a group,
Parkinson_Schmarkinson
in
Cure Parkinson's
12 years ago
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