Just diagnosed

[markland]

Hello

My husband has just been diagnosed with Parkinsons after lots of other ongoing health problems.

He is 74 and his health has been deteriorating for the last 7 years. I did suspect Parkinsons in the beginning but he has had so many other issues that it has been difficult to diagnose and got lost in the morass of health issues.

We saw a neurologist on Friday, privately, at the Runnymede Hospital in Chertsey, Surrey who diagnosed Parkinsons disease. He thinks that John has had it for about 15 years and certainly now that I look back it explains a lot.

His follow up letter to G.P. suggests taking Sinemet 62.5mg three times a day for 2 weeks and then 125mg three times a day.

I am only just starting to research the treatments available and I definitely want to see another neurologist just to talk about medication etc. and to make sure that we are taking the best course of action. I realise that there is a long waiting list to see a neurologist on the NHS so would be prepared to pay privately. We live near Woking in Surrey.

His symptoms are exhaustion, agitation and doing everything very slowly plus lots of problems with his right hand side.

He has been having trouble sleeping for about 4 years as the problems in his right hand leg got progressively worse. He also finds sitting down for any length of time very uncomfortable because of the restlessness and pain in his right hand leg which we wrongly thought was restless leg syndrome.

He holds his right hand arm as if it was in a sling and he has developed weakness and loss of dexterity in his hands particularly the right hand.

Obviously this has all been getting worse over a period of several years and his walking is now characteristic of Parkinsons.

I have 2 questions and I would be grateful for others people's input. At this stage I haven't researched the drugs so what do you think about the dose of Sinemet?

My second question is: can someone recommend a good neurologist in the Surrey area or London if necessary. Preferably somebody who is more understanding than the one that he saw the other day.

Many thanks in anticipation

[park_bear]

Your physician's prescription is appropriate. Be aware that some patients do better on time release versions of levodopa. Details here:

healthunlocked.com/cure-par...

[markland in reply to park_bear]

Thanks for your help

[Bolt_Upright]

I'm sorry you all had to join this club. If you all join us on the Zoom calls MBAnderson is so nice to host, you can talk to people with a wide range of PD experience and treatments. You will be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[markland in reply to Bolt_Upright]

Thanks. That is very helpful

[Ctime]

My guess is that getting started on Sinemet is a good first step. You might have to start slower and ramp up more gradually as many of us have side effects. For example 1/2 pill 3x daily for 2 days, then 1 pill in the am followed by 1/2 and 1/2 in the mid day and afternoon, then 1, 1, 1/2, etc up to the max dose.

[markland in reply to Ctime]

Thanks for that tip

[Zella23]

Our GP was very understanding about us not liking or getting on with our first Neurologist.

We live the other side of London and asked our GP if we could change to a different Neurologist for a 2 nd opinion. We told her we d travel into London and she arranged for us to see one at the UCL Queens Square. We have been pleased with going there and it is definitely a different experience. It’s a similar journey for us. My husband has been diagnosed for 8 years.

Simemet or Madopar seems to be the standard treatment at first. My husband started with lower doses first, and then increased as you’ve stated above.

[markland in reply to Zella23]

Thank you. That is very helpful

[Gallowglass]

I’ve had pd at least 5-10 years. Diagnosed one year ago. By that time I could barely walk ( due to hip pain, weakness,and foot dystonia) write or speak loud enough to be heard without a dry cough and choking on water. During that year I’ve had good luck with C/L, physical therapy (pd specialist for balance, walking) and voice therapy, (helps avoid dry cough, loss of volume, and choking), regular gum chewing ( non aspartame) and disciplined Christian prayer. After that I was able to increase walking, stationary biking, and an now doing Rock steady boxing (me!) all of which help. These are not cures and I can still barely write) but helps a lot.

[chartist in reply to Gallowglass]

I think once your husband has been on Sinemet and gotten his dose adjusted to optimal, life will get better for the both of you!

Another consideration once he is stable on his Sinemet is this :

healthunlocked.com/cure-par...

Art

[markland in reply to chartist]

Thank you for that link. It is very interesting ascI am only just beginning my research into Parkinsons treatment.

[markland in reply to Gallowglass]

Than you. Not surecwhat C/ L is!

[Gallowglass in reply to markland]

Carbidopa/Levidopa in the USA.

[pdpatient]

Hi Markland,

C/L Is Carbidopa / Levodopa which is the generic name for the brand name drug Sinemet. I don't think many patients buy the brand name anymore. The generic version is a lot cheaper and equally effective, although anecdotal experiences that have been shared on this forum has suggested some absorption issues with some manufacturers.

You are on the right path and I send you my best.

[markland in reply to pdpatient]

Many thanks

[Zella23]

it stands for Carbidopa/levadopa which is Sinemet or another similar formula Parkinson’s Meds. Madopar is made up of levadopa and Benzerazide the only difference is the decarboxylase inhibitor used to make the Levadopa reach the brain more easily.

parkinsons.org.uk is a good website for explaining drugs used in PD as well as other information.

[markland in reply to Zella23]

Many thanks

[JohnPepper]

Hi. My PD started in 1992 and in 1994 I started to do brisk walking. I joined Run/Walk for LIFE and hav enever looked back since. I am now nearly 89 and still going sy=trong. If it will help, read my book.

[markland in reply to JohnPepper]

Thank you. I have just read your LinkedIn In page and will research this more as it looks very interesting

[JohnPepper in reply to markland]

I look forward to getting an email from you, after your search. What you put in is wghat you get out. Email me foe m,ore info.