Early-onset Parkinson's slower progression?

[earthdweller]

Hello, I just wondered if it's true that early-onset Parkinson's progresses more slowly than when you get it at an older age?

I've heard this but I'm not sure if it makes sense or why it would be true.

Thanks.

[Lizzie7]

Hi there, I've heard the opposite in fact, that early-onset progresses more quickly. I was diagnosed at 44, 10 years ago and I'm coming up to the advanced stage. If I wasn't taking any drugs I don't think I could walk. But I hope that I'm wrong about this. I expect that progression is still variable to be honest.

[LauraL]

Hi Earthdweller

I was diagnosed at age 46 after 2 years of testing for other things. Although i have had DBS to control tremors on my right side, I do not have other debilitating symptoms yet. I don't sleep well but there are worse symptoms. I feel blessed. I am now 61.

[JohnPepper]

Hi earthdweller. My first symptom appeared in 1963 at the age of 29. More symptoms followed until I was finally diagnosed in 1992. My first symptom was finding that I could no longer throw a ball properly. Had I have gone to a neurologist then, I would think that he would have been able to diagnose the Pd, but I never thought of going to a doctor because I could not throw a ball properly. In those days, there were not too many neurologists around anyway, and certainly not in the town where I lived. It is difficult to answer your question objectively as to whether it progresses slower than other forms of Pd. I have been able to overcome most of my Pd movement problems and have not needed to take any form of Pd medication since 2002. I am now 79 years old and live a fairly normal life.

Three unusual things happened to me since 1960. The first was that I injured my back very badly that year and after ten years of struggling with incredible pain, I was advised to do exercises to strengthen my core muscles, in order to overcome the back pains. That worked! As a result, I have been doing meaningful exercise ever since. Secondly, I was prescribed a monotherapy of an MAO-b inhibitor in 1994 and I continued to take that until 2002, when I came off that and have not needed to take any other form of Pd medication since then. That is unusual! Not many doctors prescribe MAO-b inhibitors, of which there are three. When they do prescribe it, they normally prescribe at least one other Pd medication, mostly those containing levodopa. The side effects from those other medications can be, and often are, worse than the Pd symptoms. Thirdly, I gave up my high-powered job, running a large company, which my wife and I founded in 1970. That cut down the enormous stress under which I had been working. I also gave up several other commitments that were causing me stress. Stress is a major trigger for all sorts of health problems.

It took 29 years for my Pd to be diagnosed, which is a long time in most people's minds. That means that possibly my Pd was very slow in progressing. The problem is, that there is no simple diagnosis for Pd. Bad walking (Shuffling) is one give-away. Only when I started to shuffle did my doctor realize that I possibly had Pd. He had been treating me for all the other symptoms as individual problems. I was taking a large number of different medications for all those problems.

I hope this can help answer your question.

John

[racerCP in reply to JohnPepper]

Hi John,

Is it possible that PD is several different diseases with different manifestations and progressions in different people? In hindsight I realize my first symptoms were a lazy foot or slight foot drop in racewalking and an arm that didn't move unless I made an effort, all on one side. That was around 2003. I also noticed that my swimming was not in a straight line because the same side didn't move as vigorously. My orthopedic doctors said it was aging and a back issue. After an completely uneventful hysterectomy from which I fully recovered within a week I noticed the tremor on the same side, all right side. I again went to my orthopedic surgeon and asked about PD, that was exactly one year ago and after exam he said absolutely not. On reading up on the internet I noticed I had more than two symptoms of PD, resting one-sided tremor and some stiffness with arm movement, which brought me to movement specialist with a positive diagnosis eight months ago. I talked to him about MAO-b inhibitors but he feels exercise is the only answer and that I don't need meds yet. My one symptom that is bothersome and new is insomnia but he suggested Melatonin which doesn't always work. Hopefully something will come along. Exercise is IT right now and I enjoy it tremendously. If PD gives me an excuse to do more so be it.

[PatV in reply to racerCP]

melatonin plus valerian plus going to bed same time every night. if I can't sleep I get up and watch old movies until i fall asleep. Stay undermedicated when you start and exercise and have fun!!!

[JohnPepper in reply to racerCP]

Hi Racer. We have to understand that Pd is merely the shortage of a neurotransmitter in a certain part of the brain. That means that any communication between that part of the brain and any other part of the brain is suspect. As there are millions of brain cells involved, the chances of mine and yours being in the same place is pretty small. That is why no two Pd patients have the same symptoms.

Having said that, What I think has happened to me, if I am correct, means that repairing the damaged brain cells by doing hard walking, three times a week, should work the same for both of us, if we have Pd.

You may not like walking fast, and you might choose to do different exercise, that is fine, but does that produce GDNF in the brain? Published studies have shown that the fast walking does produce the GDNF.

I have done other things among which, getting rid of all harmful stress, is a major contributor to my wellness. Have you managed to get rid of the harmful stress in your life?

I hope this helps you to make a proper assessment of your situation.

Kind regards

John

[racerCP in reply to JohnPepper]

You have been a great help to me in understanding and in action.

I hope to let you know next year that I am still med free.

Thank you, John

I am exercising and fast walking daily.

[JohnPepper in reply to racerCP]

Hi Racer. I don't know if you don't believe me about injuring yourself walking fast every day. You will injure yourself and, at the same time, you will not be getting any benefit from doing it. These are genuine study results. Do yourself a favour. Only do fast walking every second day.

Kind regards

John

[froggatt55]

It is not straightforward to answer earthdweller. The older (than me) people that I know seem on a more aggressive form of Pd but when they were diagnosed the less fit they were and the less they could be motivated to exercise. This is where agree with John Pepper - I haven't avoided the drug cocktail route but I do believe in intense exercise regimes which is keeping me fit and active at 70 with 11+ years on my Parkinson's clock

If older people when diagnosed took up intense exercising (I do boxing training twice a week and train every day) when diagnosed they could well slow down the progress of the condition

[earthdweller]

Thanks everyone. It really seems as exercise is the most important thing. I do love walking and I do some boxing, just by myself at home - so I'm not sure about whether I'm doing it completely right!

But it really helps me feel good. I'll look more into some more exercise. I'm 41 but I've been having symptoms that could be described as PD symptoms probably since my 20's or earlier. Although as I've also got Ehlers Danlos (EDS)/ Hypermobility Syndrome it's very difficult to distinguish which symptoms are which. I'm still reasonably fit, but because of the joint problems in EDS I tend to injure myself very easily. For instance I was doing some weights earlier in the year, which was having great effects on my strength but I injured my back quite badly. I want to find some exercises that are safe for me and get much fitter.

Really grateful for all your replies.

[racerCP in reply to earthdweller]

I would guess pilates, yoga and tai chi but doing it seriously.

[Pete-1]

I have heard this too but I don't know if it is just anecdotal or not The other thing I have heard regarding progression is that those of us who are tremor dominant (about 66% of us) will progress more slowly. I am not pleased to say that I am in the remaining third without a tremor.

[quirkyme]

early onset means slower progression is what I've always heard, though nothing is true for all PD patients across the board

[earthdweller]

Thanks. I suppose it's impossible to generalise in any situation. It makes sense to me that the younger you are the higher the chance of you being fitter and being able to exercise, and possibly slow down deterioration that way, like froggatt55 pointed out.