Hi I’m new to this forum and Parkinson’s in general. It’s my husband who has suspected Parkinson’s and has his 1st appointment with a Parkinson’s specialist on 5th November. He’s had the symptoms for over 18months but it was thought it was a back problem as he had Spinal Stenosis. His walking is so limited because of Freezing that he hardly goes out now and needs a wheelchair if he does. He has balance issues and a slight tremor in right hand. We’re obviously anxious and wonder what will happen at his appointment and if it’s likely he might be prescribed some sort of medication. We really feel very isolated at the moment.
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Hi Mynanny,
Welcome to our forum community. While we will never minimize what your husband (and you) are going through, we can assure you that you are not alone. There are others here feeling what you’re feeling, and some who have been through it, and all are willing to share their experience and wisdom. Please feel welcome to have a look around and engage with us. There is a wide web of mutual support here, ready to help. You can also call our free and confidential helpline if you’d like to speak with a friendly and knowledgeable advisor. They’re on 0808 800 0303 and have loads of resources they can provide. Added to our website, at Parkinsons.org.uk, this is your best route to direct support.
We hope you and your husband will accept our best wishes and warmest welcome.
Jason
Forum Moderator
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Good evening Mynanny2 … I am 70, I also had back pain problems in 3 areas on my spine. This was treated with Ibuprofen originally. I also had a slight tremor & “freezing”. I also struggle to walk & now use a walking stick. I also have balance problems.
In June last year I had an Mri Spine scan which showed wear & tear issues on my spine in the areas where I had pain. I also had a Brain Mri scan which was normal for a man of my age. I then had a Datscan of my brain which showed that I was suffering with “Parkinsonism”. A lack of Dopamine showed up on the scan,
So in June 2023 I was diagnosed with Atypical Parkinson’s also Neuropathy [Up to 55% of people with Parkinson’s also have Neuropathy].
I was treated initially with Madopar, then Ropinirole. I stopped both after about 7 days as I was having a poor reaction. I am now on Sinemet which works well for me.
I am on Amitriptyline for my Neuropathy.
No doubt your husband will be put on Parkinson’s medication like Madopar or Sinemet to see if it helps his symptoms. It is done on a trial & error basis, There is no cure for Parkinson’s but the symptoms can be treated & made less troubling.
I was also given a 6 week Neurological Physiotherapy course [ 6 x 1 hour course] in a hospital gymnasium which helped. Exercise is a good for Parkinson’s.
Any questions please ask.
Best wishes
Steve2
Hi thank you for your reply. My husband is 72 and we were totally shocked when we were told in May that he likely had Parkinson’s. We know very little about it but I’m slowly learning to try and help him with his symptoms. The freezing is the worst. His feet feel like they’re stuck to the floor and he’s had falls but most distressing for him is the inability to get to the toilet on time. Can I ask from your experience do you think it’s likely medication may ease the symptoms of freezing.
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Hi Jason
Thank you for the warm welcome and the information, I’m sure we’ll find it useful. I’m beginning to realise that support from those with similar experiences is key.
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The Sinemet aka co-careldopa [Parkinson’s medication] has helped me. Though my walking can still be most troublesome. I also find that if I have been sitting down getting up & walking can be a challenge. If I stand still for more than a couple of minutes I freeze & cannot move.
I am on quite a bit of non Patkinson’s medication & the combination of these & the Parkinson’s medication can cause problems like insomnia, fatigue & nightmares.
I would suggest having a bottle by his bed to pee into. Also don’t drink before going to bed & cut down on Caffeine. Have a walking stick by the bed. Maybe wear incontinence pants.
DO MAKE SURE YOU BOOK FOLLOW UP APPOINTMENTS WITH YOUR NEUROLOGIST & GET A PARKINSON’S NURSE & more follow-up appointments.
Best wishes
Steve2
I play indoor bowls every day & before Sinemet I could only play 2-3 times a week. After Sinemet I can now play every day. But my freezing is very much part of my life & I have learnt how to avoid having freezing attacks. As I said 2 stationery minutes & my feet are stuck to the floor & unable to move. Also I cannot carry things like a tray or a cup of coffee.
Before Sinemet if I had a bad freezing attack the effects could last for 3-4 days. After Sinemet my recovery is a lot quicker.
You will start of on 1 pill a day for a week. Then 1 pill twice a day for a week. Then 1 pill 3 times a day for a week. Then 2 pills 3 times a day forever, which is what I am on.
The Physiotherapy course I took was a help.
There is also free help to make your home more Parkinson’s friendly. Like raised chairs & strategically placed hand rails.
I also have a blue disabled badge & Attendance allowance.
Steve2
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Morning Steve
Thank you for the information. My husband’s spinal stenosis has meant he has needed a wheelchair & walking for quite a few years as he can’t walk more than a few yards. He also has a blue badge. The freezing is happening all day everyday and he’s been classed as temporarily housebound by his GP. We’re hoping some sort Parkinson’s medication may help reduce the freezing symptoms if only slightly and we’re hoping they will offer him physio but his spinal stenosis makes exercising very difficult. Like you he has numerous health problems and takes a lot of medication which we hope won’t conflict with any Parkinson’s medication they might offer. We know there’s no cure we just want to improve his quality of life for as long as we can because he doesn’t have much at the moment.
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Let’s hope the new Parkinson’s medication works well for him.
A problem I have is not knowing what causes my symptoms.
Is it the medication I take?
Is it a Parkinson’s symptom?
Is it my Neuropathy?
Is it my Atrial Fibrillation?
If I don’t know what is causing my symptom how can I treat it? A never ending circle.
I bet it is the same with your husband. You will find that your GP won’t interfere with his Parkinson’s symptoms & medication. There is an awkward crossover standoff at times between the two sides of our health issues.
Best of luck to you both. Do let us know how things are going. There are quite a few readers here with similar problems who can offer advice.
Best wishes
Steve2
Hi mynanny, i see you have an appointment today with your husband at a parkinsons specialist. I hope that proves helpful. I just wanted to say that i find this forum and parkinsons uk give me most support. Its my husband also who has the condition, he is 67 and lived with this for 6 years. Everyones symptoms are different and those who are older often have other health problems to add to the mix,like your husband. Dont hesitate to ask questions here or on the helpline. People will direct you to places for support
Hi Steve
My husband had his 1st appointment with a Parkinson’s doctor today but the diagnosis wasn’t conclusive which is both worrying and confusing. Apparently from the waist down he is displaying symptoms of Parkinson’s such as ‘freezing’ which is constant & severe. However above the waist apparently everything is ok I.e. hands, face etc. if it’s not Parkinson’s then we’re told it will be the arteries in his brain clogging up and there’s no help for that it’s just an ageing thing. The plan is to give him Parkinson’s medication Co-Careldopa and an appointment for January. If the medication makes a difference then he’s got Parkinson’s if not he’s got the other thing which they can’t do anything about. Must admit we’re a bit confused & worried but as the specialist said we just have to suck it and see!
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Thank you for taking time to reply. I’m new to the forum but hopefully you’ll be able to see my reply to Steve as to the outcome of his 1st appointment. Not what we expected but I’m realising that diagnosing Parkinson’s isn’t straight forward. The doctor did do tests on my husband but apparently his symptoms aren’t exactly typical of Parkinson’s and could be more a problem with the arteries in his brain clogging up and stopping parts of his body working properly. Must say I think I’m more worried now than before the appointment but we just have to take the medication prescribed and wait and see.
Good evening Mynanny2 … Did your Neurologist suggest your husband having a Datscan? This is probably the most reliable way to diagnose Parkinson’s but not 100%. Also an Mri brain scan to rule out more serious conditions? I had a positive Datscan & normal Brain scan & was diagnosed with Atypical Parkinson’s Disease.
Whether he has a positive or negative Datscan the correct medication for him is one of the Parkinson s Dopamine replacement medications like
Co-careldopa [aka Sinemet].
Good that he is on the correct treatment. As far as I know my face & hands are fairly normal.
The treatment as you were told is very much trial & error. If the Co-careldopa doesn’t work they will try another drug. I would imagine he’ll start on a low dose & work up to a higher dose. Maybe 2 pills 3 times a day.
Freezing is very much my major issue.
Did you ask whether it might be Neuropathy? Which I & up to 55% of Parkinson’s sufferers also have.
Any questions please ask.
Best wishes
Steve2
Hi
The neurologist didn’t suggest any type of scans but did say MRI scans or blood tests won’t help to diagnose Parkinson’s. He did say he may have Atypical Parkinson’s.
He’s prescribed 2 pills 3 times a day until he sees him again in the new year.
He’s had neuropathy for some years in his legs. We’re keeping everything crossed that the medication make some difference if only a little because the freezing is so debilitating. Thanks for your support so far.
Hello again … As you may know I have Atypical Parkinson’s. You get this diagnosis if your symptoms are not “typical”.
My Parkinson’s nurse had me on 1 pill a day for a week, then 1 pill twice a day for a week, then 1 pill 3 times a day for a week, then 2 pills 3 times a day permanently.
I think it is important to SLOWLY work up to the full dose, this makes it more easily tolerated. There are side effects to these drugs. It is dangerous to take the full dose immediately.
How and when to take co-careldopa-Brand names: Sinemet, Caramet, Apodespan, Lecado
Doses vary from person to person. Always follow the instructions from your doctor or specialist nurse.
Dosage
If you’ve been prescribed co-careldopa, you’ll usually start with a low dose. Your doctor or specialist nurse will increase your dose gradually until your symptoms are under control. It’s best to take the lowest dose that controls your symptoms. This helps reduce your chance of side effects.
Co-careldopa tablets
You’ll be prescribed standard tablets, slow-release tablets, or a combination of both.
Standard tablets work fairly quickly. You’ll usually take these tablets several times a day, depending on your dose.
Slow-release tablets get the medicine into your body gradually. This means you do not have to take them as often.
The tablets come in different strengths. The medicine packet will show the amount of carbidopa followed by the amount of levodopa (both in milligrams).
How to take the tablets
Take your co-careldopa at the same time each day. This is important to help control your symptoms.
Slow-release tablets are usually taken once or twice a day. You’ll usually take standard tablets 3 or 4 times a day. Your doctor may recommend taking your co-careldopa more often if you need it to control your symptoms.
It’s best to avoid taking co-careldopa at the same time as meals containing a lot of protein, such as meat, eggs, cheese, beans or lentils. Protein can reduce the amount of co-careldopa your body takes in, meaning that your medicine will not work properly.
Swallow the tablets whole, with a drink of water. Do not crush or chew the slow-release tablets.
If you find swallowing tablets difficult, talk to your pharmacist, doctor or specialist nurse.
How long to take it for
You’ll probably take co-careldopa for a long time. You can keep taking this medicine as long as it’s controlling your symptoms and you’re not having any serious side effects.
If you forget to take it
If you forget to take a tablet, take it as soon as you remember, unless it’s nearly time for your next dose. In this case, leave out the missed dose and take your next dose at the usual time.
Never take 2 doses at the same time. Never take an extra dose to make up for a forgotten dose.
If you often forget doses, it may help to set an alarm to remind you. You could also ask a pharmacist for advice on other ways to help you remember to take your medicine.
If you take too much
Best wishes
Steve2
The Co-careldopa has certainly helped my “freezing” be less severe than it was but
it certainly hasn’t stopped it. In the early days I did go to hospital once it was so bad.
But now I understand what I do that causes it & I seem to manage quite well. I do use a walking cane now as it is something to rest on.
Fingers crossed that it makes a difference for him but it isn’t going to cure it I’m afraid. But I’ve got used to it myself & it bothers me less.
I am not sure whether my mobility / freezing issues are just Parkinson’s, just Neuropathy or a combination of both.
Best wishes
Steve2
There are a few aids for Parkinson’s sufferers like …
Might be interesting to watch these two videos.
I was immediately placed on the lowest dose of Stalevo - 1 pill 3 times a day. About 15 years later, the dose was raised to the next level and to be taken 4 times per day. The raising of the dosage resulted from the results of a review DAT scan and brain MRI that I suggested to my Parkinson’s consultant (who I now see on a reduced schedule of now only twice a year). While the DAT Scan showed that my take-up of dopamine had decreased it continued to show no neuronal loss). The review Tbrain MRI showed that the smaller than normal blood vessels in my brain had now become Moderate Cerebral Small Vessel Disease with diffuse small areas of brain death. No treatment for that other than lowering my stroke risk. For me, all of that shows how Parkinson’s can be so different for each Parkinson’s patient. As it is predominantly a disease of older people we can have a whole range of co-morbidities.
Hi Steve
My husbands doctor has put him straight on to 2 tablets 3 times a day. He’s only had 2 days of this dose and today he feels nauseous. I can’t see anywhere on the leaflet in the box that this is a side effect. I’m wondering if a slow release version might be available as that is how he takes his medication for Diabetes. The nausea may be completed unrelated but just thought I’d ask. Thank you for the other information that’s really helpful.
Hello … My opinion & the opinion of my excellent, well regarded Parkinson’s nurse, is that no way should a patient be put on the maximum dose from day 1. The body has to get used to this new drug slowly. I have had no nausea taking
Co-careldopa [Sinemet]. I did send you the link on starting this drug with a low dose & increasing upwards.
I STARTED ON ONLY 1 PILL A DAY FOR 7 DAYS. NOT 6 PILLS A DAY AS YOUR HUSBAND IS DOING.
Obviously what you should do is tell either your Neurologist / Parkinson’s nurse / Pharmacist that your husband has had this nausea reaction & ask why he was put on this high dose to start with which is clearly an error in my opinion.
As you will see NAUSEA is a Common Side effect of taking Co-careldopa.
Side effects of co-careldopa-Brand names: Sinemet, Caramet, Apodespan, Lecado
Like all medicines, co-careldopa can cause side effects in some people, but many people have no side effects or only minor ones.
Common side effects
These common side effects of co-careldopa happen in more than 1 in 100 people. There are things you can do to help cope with them:
Loss of appetiteFeeling or being sick (nausea or vomiting)Feeling dizzy when you get up from sitting or lying downProblems sleeping (insomnia)Uncontrollable twitching, twisting or writhing movements (dyskinesias)
Some people also notice that their pee, sweat or saliva turns a reddish colour. This is normal with co-careldopa and is not dangerous.
Keep taking the medicine, but talk to your doctor or pharmacist if the advice on how to cope does not help and these side effects bother you or do not go away.
Serious side effects
It’s possible to have serious side effects with co-careldopa. Some of these are rare and happen in less than 1 in 1,000 people. Others are more common.
Talk to your doctor or specialist nurse if you:
- start gambling, binge eating or shopping uncontrollably or have an unusually high sex drive – these can be signs of impulse control disorder
- have cravings for larger doses of co-careldopa than you need to control your symptoms – these can be signs of dopamine dysregulation syndrome
- feel unusually sleepy or suddenly fall asleep during the day
Call your doctor or call 111 now if you:
- get mouth ulcers, bruising or bleeding gums – these can be caused by a blood problem
- feel light-headed or faint
- have strange or unusual thoughts, including thinking things that are not true (delusions)
- see things that are not there (hallucinations)
- have mood changes, including anxiety or depression
- are thinking about hurting yourself
Immediate action required:Call 999 or go to A&E now if you:
- have chest pain or problems breathing
- have a fast heartbeat (palpitations)
- have a seizure or fit
- have blood in your vomit
- have black poo – this can be a sign of bleeding in your stomach
Information:
Best wishes
Steve2