One times it can be difficult to take in all the information at these appointments. Maybe you could get some info from the parkisons nurses, they maybe able to explain it a bit more.
Wishing you all the best Gary.
Hi, I was diagnosed with PD 5 years ago and have found that after a while, even with increased dosage, the medications stop working and I have then been swopped to another medication. I am the sole carer for my husband who has Alzheimerâs (diagnose 48 hours prior to my PD diagnoses), our nearest family live 250 mile away, so most of everyday life is down to me.
I was on Levedopa for two years but suddenly developed side effects. So I was change to Sinamet 12.5 which has slowly been increased over 3 years to 2 tabs x 4 doses at 4 hour intervals. As this level has made me feel so unwell, I have cut it back to 1;2;2;1 at four hourly intervals. I now feel better but the tremors are worse. I eventually got to see the consultant after writing to him (two and half years since last appointment) and am now waiting for a MRI scan.
HAS anyone tried the 'Cala Trio device? If so, was it effective in reducing the arm tremors?
I have found the best way to illustrate to myself and others that the medications are/are not working is :-
Prior to the first dose of the day is to try to draw a straight line.
One hour after taking the dose, is to try to draw another straight line. I then repeat it this throughout the day, marking each line with prior or after.
If the medication is not working there will be no difference between the lines the lines and at times the second line is worse than the first. This sheet of lines can be presented to the PD nurse/consultant or even posted in if you are on âtelephone appointmentsâ.
PD is not a great diagnosis but I find that by being practical, being open with others about the PD and not trying to hide it plus laughing a lot (watch Billy Connolly on his own PD) most days are fun - No I cannot do all that I was once able to do but PD has made me discover lots of new things.
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@GARY1967 and @SheilaW welcome to the forum.
@Lizzyg for example, we finally went out shopping together for the first time in months today and after half an hour my husbandâs meds had worn off. All he could do was hold on to the trolley for support. He couldnât unload shopping on to the conveyor belt, help with packing etc. I even had to help him into the car again. Heâs 47 and two years post diagnosis. When thus happens he has the mobility of a 85 year old
Sorry to hear that. So is that how it is for your husband on a daily basis? Iâm guessing that is the situation for many others. Being totally new to the disease and having no clue how it can effect each individual. I am doing my best to do my research and understand the disease.
I suppose everyone becomes aware of how it effects them and knows at what time of day the medication wears off. Does your husband exercise? From what I have learnt so far exercise is vital for PD patients to give them more flexibility.
Wishing you a happy new year.
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Hi there Momyali
I am so sorry to hear you are i this situation relatively soon after diagnosis. We can all theorise as to what is going on but everyone is different. In your situation I would ask for a second opinion from a neurologist who specialises in PD or contact your neurologist secretary, tell him/her what is going on and ask for an urgent review. Given the current situation this is something you may have to pay for privately but it will be money well spent. See if you can find a hospital with a dedicated movement disorders centre as can be found in many major centres. Unfortunately at the moment you often have to fight to get good care. A good neurologist will give you a plan which will make you feel more confident and able to move forward. Once you are certain the meds are right you can address the other issues using other therapies to enable you both to live well despite his illness.
I send you love and care Julia
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@yogalady Many thanks for your reply. I think you are right. A second opinion is something I have been thinking about. Something just doesnât feel right.
Hi Lizzy, He tries to exercise, mainly walking, but canât do so for too long. I feel itâs his diet that is causing most of the problems. I guess itâs a matter of trial and error for a while longer.
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Hi Momyali, I am fairly new to the forum and the thing that surprises me is the number of people who have been diagnosed with PD but have not had any scans.
As I understand it there about 10 different types of PD, if medication is being prescribed without the full knowledge of the type of PD, then to my mind it would be like diagnosing Cancer and trying to treat it without knowing what type of cancer or where it is located, it just would not happen.
Best wishes to you and your family - hopefully you will soon get the answers you so obviously need - the consultant sees a small pin prick picture, you have the full video.
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Hello SheilaW and everyone else. My wife, also Sheila, was only diagnosed in April 2021 with PD & LBD. This after two years searching and being side-lined with pneumonia, gut issues and of course lockdowns etc. She has now been on Rivastigmine patches since May 2021 - for which we cannot see any results, and has been on Careldopa since August 2021. Built up to the max dose of 6 tabs a day, taken as two each time. She has developed distressing side effects of shallow rapid breathing, inability to talk or find words, heavy mucous nasal discharge and heavy salivation, always around 1-2 hours after taking the tabs. With doctorâs advice have reduced to one tab at a time, early morning, and evening before early bed. Side effects remain. Have seen the PD team only twice and last time was 6 months ago, again due to C-19 and lack of specialist staff. I like the idea of the straight line test, so simple. But very concerned at the side-effects and would really like to take her off Careldopa completely. What are the alternatives? Has anyone else had such side-effects? I feel really guilty for not being able to find solutions and to help improve her quality of life. We see the videos and read the booklets, but so many people seem to be younger (we are both over 70) and off dancing, painting, running etc. We do a daily walk of about 2km, any longer and she is shuffling and leaning heavily on me. Nights are broken by frequent trips for a wee, and I have to help her get up and down from bed or chairs, do all the housework, cooking, shopping, manage vehicle and house. What meds might improve any of this? Thanks for sharing, means very much!
Hi Chrisheila,
Welcome to our forum community. We wanted to say hello and to thank you for sharing your story. We certainly understand how difficult it can be for carers as well as PWP. Please be aware of the resources on our website here. A simple search using the bar at the top of the page can yield loads of helpful results. We also recommend you call our free and confidential helpline. This is an easy way to get answers from our team of highly knowledgeable and kind advisers, all of whom are capable of helping in a wide range of ways.
Wishing you both the best,
Jason
Moderation Team