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Coping with heat
I need your advice my friends. We live in the north of England and rarely get a heatwave but this summer we had 2 and my HWP, who is in his 29th year of diagnosis, really suffered. I looked on HU and saw this can be a problen in PD. I told him what I had read and dealt with it with fans and cold packs
I need your advice my friends. We live in the north of England and rarely get a heatwave but this summer we had 2 and my HWP, who is in his 29th year of diagnosis, really suffered. I looked on HU and saw this can be a problen in PD. I told him what I had read and dealt with it with fans and cold packs
JeanieBeanie
in
Cure Parkinson's
2 years ago
Muscle pain and DBS
Has anyone experienced muscle pain in your arms, legs, etc. after DBS? Do settings have anything to do with it?
Has anyone experienced muscle pain in your arms, legs, etc. after DBS? Do settings have anything to do with it?
Sherry1960
in
Cure Parkinson's
2 years ago
hydrocephalus
Hi folks , I am 42 and have battled hydrocephalus since age 20.This was caused by a presumed tectal plate tumor of some kind.after a period of battling bad headaches and vision issues etc.Been through a 3rd ventriculostomy which controlled things for a few years.This eventually failed and had a vp shunt
Hi folks , I am 42 and have battled hydrocephalus since age 20.This was caused by a presumed tectal plate tumor of some kind.after a period of battling bad headaches and vision issues etc.Been through a 3rd ventriculostomy which controlled things for a few years.This eventually failed and had a vp shunt
versa2508
in
Headway
2 years ago
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Normal Meds: is this it?!
I say normal because up until recently I’ve used a cocktail of normal (Rasagaline, Requip and Madopar) alongside Mucuna. The Mucuna was my go to stuff if I needed an immediate lift as it worked so quickly. But I promised my neuro that I’d leave it out: it’s difficult to measure and rationalise when he
I say normal because up until recently I’ve used a cocktail of normal (Rasagaline, Requip and Madopar) alongside Mucuna. The Mucuna was my go to stuff if I needed an immediate lift as it worked so quickly. But I promised my neuro that I’d leave it out: it’s difficult to measure and rationalise when he
jeeves19
in
Cure Parkinson's
2 years ago
Deep Brain Stimulation
Has anyone with Cerebellar Ataxia been treated with Deep Brain Stimulation? Was it beneficial?
Has anyone with Cerebellar Ataxia been treated with Deep Brain Stimulation? Was it beneficial?
Ostap
in
Ataxia UK
2 years ago
DBS surgery
If you have had DBS surgery, share how long it took til you got the settings right to help with the PD symptoms. Thank you!
If you have had DBS surgery, share how long it took til you got the settings right to help with the PD symptoms. Thank you!
Sherry1960
in
Cure Parkinson's
2 years ago
Is it possible to have a flare up of PMR without a change in predisolone dosage?
I have had PMR for over 2 years & I'm currently on 12mg of Pred. I have seen a Rheumatologist & started Methotrexate on 15th September10mg once a week but I have not started reducing the Pred yet. For the last 4-5 days I have been feeling cold, tired & aching all over & feel like I've got the flu.
I have had PMR for over 2 years & I'm currently on 12mg of Pred. I have seen a Rheumatologist & started Methotrexate on 15th September10mg once a week but I have not started reducing the Pred yet. For the last 4-5 days I have been feeling cold, tired & aching all over & feel like I've got the flu.
Springer2210
in
PMRGCAuk
2 years ago
DBS for OCD?
Hi - I suffer from OCD, but I am also a physician. I'm looking to interview patients who have gotten DBS for OCD to better understand what the experience is like, and to be able to better describe it to the medical community. If you've gotten DBS for OCD and are willing to talk anonymously about it,
Hi - I suffer from OCD, but I am also a physician. I'm looking to interview patients who have gotten DBS for OCD to better understand what the experience is like, and to be able to better describe it to the medical community. If you've gotten DBS for OCD and are willing to talk anonymously about it,
RHCPfan
in
My OCD Community
2 years ago
How did we arrive at Disease?
I’ve often wondered how I ended up with Parkinson’s. Well the advent of Cov-vid may have inadvertently shed a light on this question. I began reading anecdotal reports, and articles saying that some people getting the cov-vid shot were experiencing a metallic taste in their mouth immediately following
I’ve often wondered how I ended up with Parkinson’s. Well the advent of Cov-vid may have inadvertently shed a light on this question. I began reading anecdotal reports, and articles saying that some people getting the cov-vid shot were experiencing a metallic taste in their mouth immediately following
Cons10s
in
Cure Parkinson's
2 years ago
Bayer Investing in New Cell Therapy Facility
Parkinson’s disease is a progressive neurodegenerative disorder caused by the
death
of nerve cells in the
brain
, leading to decreased dopamine levels. At diagnosis, it is estimated that patients have already lost 50-80% of their dopaminergic neurons.
Parkinson’s disease is a progressive neurodegenerative disorder caused by the
death
of nerve cells in the
brain
, leading to decreased dopamine levels. At diagnosis, it is estimated that patients have already lost 50-80% of their dopaminergic neurons.
redhawk1
in
Cure Parkinson's
9 months ago
shingles question
Hi, just wondered how dangerous it would be to if I were to come into contact with someone with shingles? My disabled daughter who lives in supported living has shingles and I’m due to see her soon. I’m now on 6mg prednisone- am I less compromised as it’s a lower dose? Thanks
Hi, just wondered how dangerous it would be to if I were to come into contact with someone with shingles? My disabled daughter who lives in supported living has shingles and I’m due to see her soon. I’m now on 6mg prednisone- am I less compromised as it’s a lower dose? Thanks
Abcd123455
in
PMRGCAuk
2 years ago
Tetanus shot?? Any interactions with Imbruvica?
My husband got a tetanus shot because he was cut with something rusty and hadn't had one in at least 10 years. I haven't had one either, but if I do get cut, or otherwise need one, am I able to get it without a reaction because of CLL or Imbruvica???? Googled it but I didn't get any good results.
My husband got a tetanus shot because he was cut with something rusty and hadn't had one in at least 10 years. I haven't had one either, but if I do get cut, or otherwise need one, am I able to get it without a reaction because of CLL or Imbruvica???? Googled it but I didn't get any good results.
DawnRedwood
in
CLL Support
2 years ago
ongoing symptoms
Hi I’m new to the group, I had a tumour removed from my Pineal gland in November 2020 since then I have had a VP shunt implanted in April this year because where the tumour was removed a cyst decided to grow which blocked the flow of csf I still have ongoing symptoms like dizziness ,headaches I was
Hi I’m new to the group, I had a tumour removed from my Pineal gland in November 2020 since then I have had a VP shunt implanted in April this year because where the tumour was removed a cyst decided to grow which blocked the flow of csf I still have ongoing symptoms like dizziness ,headaches I was
Tsararab
in
Headway
2 years ago
Have a good Laugh
Spoke to my pharmacists today,asked about Shingles vaccine, she didn't know at 70 we got a shingles vaccine, was saying I needed the Shingrix and it may have to order it,was like speaking to a 4year old BLANK , She said it was a school day every day,she obviously doesn't TV either. Lol
Spoke to my pharmacists today,asked about Shingles vaccine, she didn't know at 70 we got a shingles vaccine, was saying I needed the Shingrix and it may have to order it,was like speaking to a 4year old BLANK , She said it was a school day every day,she obviously doesn't TV either. Lol
Harrywogan
in
PMRGCAuk
2 years ago
“How Does Deep Brain Stimulation Change the Course of Parkinson's Disease?”
This very recent (May 2022) review was posted elsewhere (FB) and after reading it myself (it's open access) I thought it worth re-posting here on HU - for those interested in learning more on long-term DBS outcomes. https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.29052?fbclid=IwAR3EaJVE5QUEQ165u7wKsneu2V3JHhs36YuQCiRHxjSrbhUXHTkr31qCafU
This very recent (May 2022) review was posted elsewhere (FB) and after reading it myself (it's open access) I thought it worth re-posting here on HU - for those interested in learning more on long-term DBS outcomes. https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.29052?fbclid=IwAR3EaJVE5QUEQ165u7wKsneu2V3JHhs36YuQCiRHxjSrbhUXHTkr31qCafU
Kevin51
in
Cure Parkinson's
2 years ago
Doctors ignorence
How the hell does someone get the doctor to listen when speaking about my historic BI...since a recent bout of Bells Palsy I started to mention the permanent dent n crack I have in my skull n how I struggle eeeveryday. Hesent me for a CT scan on my head he said your brain looks fine don't worry He then
How the hell does someone get the doctor to listen when speaking about my historic BI...since a recent bout of Bells Palsy I started to mention the permanent dent n crack I have in my skull n how I struggle eeeveryday. Hesent me for a CT scan on my head he said your brain looks fine don't worry He then
Survivor37
in
Headway
2 years ago
Radiation Necrosis?
Hello Has anyone had any experience of radiation necrosis in a brain met? I am stage 4 ALK positive and on treatment with Ceritinib for the last 3 years and was diagnosed over 5 years ago. I had SRS to 4 brain mets about 13 months ago. They responded really well with 2 disappearing,1 shrinking and one
Hello Has anyone had any experience of radiation necrosis in a brain met? I am stage 4 ALK positive and on treatment with Ceritinib for the last 3 years and was diagnosed over 5 years ago. I had SRS to 4 brain mets about 13 months ago. They responded really well with 2 disappearing,1 shrinking and one
BellaBe
in
The Roy Castle Lung Cancer Foundation
2 years ago
Shingles Vaccine
There has been a lot of advertising on Classic FM that older people with immune deficiency diseases should get the anti shingles vaccine. I asked the question a few years ago and it was stated by Prof Harrison that this was a live vaccine and was therefore dangerous to us with ET/PV especially if we
There has been a lot of advertising on Classic FM that older people with immune deficiency diseases should get the anti shingles vaccine. I asked the question a few years ago and it was stated by Prof Harrison that this was a live vaccine and was therefore dangerous to us with ET/PV especially if we
catkinspolymer
in
MPN Voice
2 years ago
Erythema Migrans
I have CLL/SLL , diagnosed in 2010. Have been taking BTK inhibitors since 2017. First Imbruvica and the last two and a half years Calquence. A small reddish spot appeared on my arm in the middle of June. It started to spread. I did not pay much attention. End of July I showed it to my oncologist who
I have CLL/SLL , diagnosed in 2010. Have been taking BTK inhibitors since 2017. First Imbruvica and the last two and a half years Calquence. A small reddish spot appeared on my arm in the middle of June. It started to spread. I did not pay much attention. End of July I showed it to my oncologist who
zsuzsiB
in
CLL Support
2 years ago
An urgent warning about rytary...
I am in contact currently with 3 hu people that are seriously messed up on rytary...i think its a kindling effect or what i call stacking. I believe we are not only overdosed on rytary but it also is having some strange psychiatric effects common to us 3. please check the link for full understanding,
I am in contact currently with 3 hu people that are seriously messed up on rytary...i think its a kindling effect or what i call stacking. I believe we are not only overdosed on rytary but it also is having some strange psychiatric effects common to us 3. please check the link for full understanding,
beehive23
in
Cure Parkinson's
2 years ago
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