My story so far.

[Amytink]

72 years old. Diagnosed with PD. 5 years ago. Had a stiff neck and shoulder which caused the diagnosis.

Put on levodopa straight away. Now taking 25mg and 12.5 mg four times a day plus two 25mg controlled release tablets at bedtime. Approx 12 months ago Rasagaline added - one dose daily 1mg.

My symptoms have not increased greatly. Stiff and painful neck is still there but slightly worse. Lilttle things like bad handwriting have surfaced. Also find that sometimes it’s difficult to get to sleepy and beginning to have dreams which cause me to thrash around in bed.

I keep working 2 full days and 2 half days each week and find that I don’t notice the symptoms half as much whilst working. Also look after two grandchildren two days a week and take them back and fire to school.

All in all not too bad. If I had not had a PD diagnosis I would probably put my symptoms down to “just getting old”. I feel staying active by working , child care and dog walking are doing me more good than the meds I’ve been prescribed

I have now been prescribed rotigotine by means of trans dermal patches each day. The potential side effect notes that came with it were likes a separate book to read and quite frankly frightened me do much that I have not started taking them. “Suddenly falling asleep and , if so, bring advised not to drive are big problems for me. If I can’t drive then I would have to give up work and give up my childcare duties. I think THAT would then cause my symptoms to increase.

WHERE DO I GO FROM HERE?

[Hidden]

Facebook group:Parkinson’s thiamine hcl

[GymBag]

This is an important decision, and only you can make it. Agonists can be tolerated very well by some people with very little side effects , while others are allergic to them and must pay dearly for their benefit.

The problem is that when we start taking the medication everything is fine. Eventually the side effects increase as dose size increases and by this time it is difficult to get off it.

Falling asleep suddenly and leg and arm rashes were my price to pay and the sleep / drowsiness ended up costing me my driving as you suspected.

If I had a re-do, I would try to delay the start of taking it if I could. However it might not have been possible because it is effective. However there are also other reasons beside sleep that may cause you to have to discontinue use of a driving license. A lazy foot, inability to tell where you foot is, curling toes, etc which are PD symptoms that are all reduced by this medication.

[Jalia]

Hi, interesting to read your story. My husband is 73, diagnosed 2 years ago but probably had symptoms at least 4 years previously. He is taking Sinemet 12.5/50 mg daily. He has Dropfoot with this condition which makes walking any distance doubly difficult. He is extremely frustrated as he had to finish working when diagnosed at a job he loved doing. I'm afraid he also has quite a negative attitude as well as a result of all this plus lockdown didn't help.

I must say I'm impressed with all that you are able to do, not least your grandparent activities !

!Are you able to say whether Rasagaline has been helpful and in what way please !

I'm wondering why your levodopa was not increased before prescribing Rotogotine . ( not that I know very much at all about this awful condition !!)

Regards

J

[Amytink in reply to Jalia]

Hi,

Many thanks for your reply. I’m sorry to hear your husband is a bit down about everything.

Encourage book to get about and as much as he can. My own experience is that the harder I push to do everything then the easier it becomes.

As for the Levodopa, I can’t say I ever noticed much effect. The pain from my shoulder has never eased and is still there - slightly worse if anything. They ask me how long it takes for the levodopa to “kick in” and how long does it take to wear off?

However I have never noticed any real benefit in the form of kicking on and if I have forgotten to take them then I never notice a bad effect. When I had rasagaline on top of them I similarly never noticed anything.

Perhaps that is why I am reluctant t to start on these patches when I definitely don’t want to risk the possible side effects.

I’m sorry if I am not being very positive but please do encourage your husband to get with it. I know several people. Well into their 80’s with PD and still getting about. I’m sure that it is their positive attitude that gets them there

Best wishes to you and your husband.

[Jalia in reply to Amytink]

Thank you. We do get out and about as much as possible but miss social side of Whist clubs etc 3/4 times a week which of course were closed due to pandemic.I agree that positivity is vitally important and I do my best to try to.impart this to him ! He has taken antidepressants for many years and coped with that very well. Parkinsons diagnosis came as a great blow to him although I had suspected it for quite some time. If he could walk easily it would help !

[park_bear]

You are very right to resist the dopamine agonist rotigotine. Dopamine agonist serious adverse effects are all too common and can be devastating. Some seniors have lost their life savings due to compulsive gambling, and some cannot even get off the medication due to dopamine agonist withdrawal syndrome. Many lawsuits have been filed.

jamanetwork.com/journals/ja...

" An ICD [impulse control disorder] was identified in 13.6% of patients (gambling in 5.0%, compulsive sexual behavior in 3.5%, compulsive buying in 5.7%, and binge-eating disorder in 4.3%), and 3.9% had 2 or more ICDs. Impulse control disorders were more common in patients treated with a dopamine agonist than in patients not taking a dopamine agonist (17.1% vs 6.9%; odds ratio [OR], 2.72; 95% confidence interval [CI], 2.08-3.54; P < .001)."

I personally suffered disabling orthostatic hypertension [Loss of blood pressure upon standing] as a result of a dopamine agonist. Fortunately I recovered. In one study 34% of patients suffered orthostatic hypotension upon the initial dose of a dopamine agonist:

pubmed.ncbi.nlm.nih.gov/110...

In my opinion dopamine agonists should be reserved for patients who desperately need relief and cannot get it any other way.

[GymBag in reply to park_bear]

ALL true ParkBear

BUT

There comes a time

[Seamus6]

I'd second PB's comments.I was offered DA's by my neurologist but declined .(didn't want to take the risk)

Five years in still doing pretty well on C/l

...one mind altering drug at a time for me 🙂

..... but I know for some people they can work.

[Amytink]

Thank you all for your replies. Much to think about but all very helpful.

[jeffmayer]

Have you tried or been offered cortisone for your shoulder

[Doohat]

I'm a little confused when you say you're taking "25mg and 12.5mg" of levodopa. That sounds awful low. Are you splitting the pills in half or in quarters? Normally they start you off at 100mg of levodopa in addition to 25mg of carbidopa (ie. Sinemet 25/100) taken 3x a day. I would recommend tweaking your levodopa dosage rather than taking a dopamine agonist. It's much safer I think and probably more effective. Just my opinion. Talk to your doctor first.

[Hidden in reply to Doohat]

I presume the OP gave the Carbidopa amount…

Which for some reason comes first! Levodopa gets no respect.😀

[MinMichy]

Have you ever practiced guided meditation? I had severe neck and shoulder pain upon getting diagnosed about 3 years ago. I downloaded and tried several meditation apps on my phone. I start each day and end each day with a relaxation, calming or breathing meditation. One meditation I like is called a body scan. There are several, you can experiment with until you find what you like. The app instructor guides and helps you focus. Don't be too hard on yourself if you have trouble meditating, they call it "practicing meditation" for a reason. You get better as you practice! You focus on the body areas that are called out during the meditation and try to relax that area. I have a lot of muscle rigidity and tremors. When I focus deep breathing and relaxation I am able to sometimes even stop my tremors. My severe neck and shoulder pain is gone. It also helps me fall asleep in the evening. Meditation practices are my "go to" for moments of anxiety, muscle tension, or in need of a calming moment. I sometimes just have to take a few deep breaths and I'm much better. It helps me tolerate PD, I hope it might help you too!

[gginto in reply to MinMichy]

Agreed- the Body Scan - Mindfulness meditation is Great as it takes you through your whole body ..moment by moment. I also find it calms the mind and body right down and seems to linger through the day.. This along with a good exercise program works wonders against pd!

[Erniediaz1018]

I say keep up the good work!