Greetings from a USAmerican


#1

New to the forum, I am a retired man of 76 years, the last nine of those coping with Parkinson’s among other conditions. So far, my symptoms are mild to moderate. I have medicated myself with mucuna pruriens for the last several years, never having taken any other drugs, such as Sinemet. Mucuna works well.

Fortunately my son lives with me and looks after me, but I try to maintain my self-reliance. I keep busy with writing, graphic art, and exercise. And I often escape through video games. I go to bed each night thankful for having mostly enjoyed life for another day and I get up in the morning hoping for a reasonably good day. At my age I consider myself lucky to see another sunrise.

I joined the UK Forum to get less commercialized information about the disease, more reliable news about the search for a cure, and to share personal experiences with PD. I have enjoyed reading your entries, finding them informative and moving. I wish you all well and hope to communicate with you.

All the best–
Jack


#2

I enjoyed your post. Welcome. I have had Parkinson’s since 2007. I too climb in my bed at night and am thankful to have had a reasonable day. Last Wednesday I even managed to go into Leicester to do some shopping. Can’t remember having done that in a long, long while and my husband had the biggest smile on his face that I had done so well.

Here’s to many more good days for you and all PD sufferers.


#3

Thank you for the welcome. Good for you on your trip into Leicester! We must not let the disease imprison us.

Yes, to many good days!


#4

I totally agree. Today, is a ‘good’ day. I have a stoop but today, am almost walking straight. I know it won’t last for long, but I will enjoy it while it lasts. Off to my Parkinson’s gym class - it really lifts your spirits we all have the dreaded P word in different stages but ALL manage to laugh. It also helps if one of us has a problem; you can be sure someone in the group has had it or knows someone who has - it really helps to stop you worrying. We not only do exercises, but practical things like if we fall, we learn how to safely get up, etc

Nice to hear from someone across the pond. Is treatment the same as ours in the states?


#5

I find it admirable that you motivate yourself to go to a gym class. Fortunately, I am treated by the Veteran’s Admiration, which is socialized, but I haven’t made use of the opportunity to take physical therapy there. On the other hand I exercise regularly at home. Nothing makes me feel better than physical exercise.

Treatment here may be the same as it is in the UK with a big difference–we usually have to pay heavily for it. Meds alone can bankrupt a person.

I see that the camaraderie you enjoy in a gym class can be very beneficial.

Do you take medicine?


#6

Hi, have had PD since 2007 - yes I do take meds = Pramipexole 0.18 and Sinemet - plus and slow release (at bed time). I know we are very fortunate with our NHS and am very proud of it. I get annoyed at those who abuse it. Its not until we desperately need it do we realise how good it it.

I see you are treated by Veteran’s Admiration. What branch of the services were you in? Not wanting to pry or get over familiar. I am a product of the Anglo-American WWII effort if you get my drift. My Dad was in the 82nd.

Keep strong and don’t let it win - don’t give in


#7

I first noticed symptoms in 2010. I took no meds for the first few years, having heard bad news about the prescribed ones. Now, as I mentioned before, I take only mucuna pruriens. Do you suffer any serious side effects from the drugs you take?

I hope your dad survived the war. I was in the army. I too was a war baby and my father was in the Army Air Corps.


#8

I am fortunate, I suffer no side effects and to be fair, if I didn’t have this Captocormia which, is Parkinson related and only 10% of Parkinson people get, I would say I get by pretty well despite the number of years I have had it.

Yes, my Dad did come through WWII and I met him in 2002. I am proud of my US family - my Dad died just over a year ago and my half sister sent me photo’s - the old Vets gave him a gun salute and his coffin was draped in the USA flag. I met him only once for reasons I can’t go into. But my half sister and me have stayed in contact. His best friend was just 6ft away from him in the Battle of the Bulge when he was killed. My Dad was injured by a tree falling on him - he also has 3 Purple Hearts.


#9

I’m glad for you to be getting by pretty well after so many yerars. As you know this disease can inflict us with a host of ailments, most of which are very distressing. And it seems to afflict each of us differently. I try to be stoic in dealing with it.

Your description of your father seems full of pride. And your relationship with your half-sister probably helps to keep him in a good place in your heart.


#10

Hello Jack and greetings from rainy UK.
I’ve had PD since 2005. At least that’s when it was diagnosed. I take macuna–it tastes vile but does the job! I also take trihexie and ropinerole and I’ve recently started on lion’s mane. I had all the mercury removed from my teeth which was horrible but worthwhile. You sound like a very creative individual; has having PD contributed in any way to your activities? I know under the circumstances it hardly seems appropriate but being grateful for one more day keeps me going.
Best wishes


#11

Greetings to you! Do you take mucuna powder? I take it as an extract. What side effects do you have from trihexane and ropinerole and lion’s mane? How do they help? I’m always on the lookout for good natural meds.

Yes, mercury is reported to be a culprit.

I write poetry and make digital images on my computer. My self-portrait is in the Creative Corner of this forum. Having PD does require extra determination.

I too am kept going by being grateful for another day as a gift.

Best wishes to you too.


#12

Hi Jack - Hope you are ok. Had a bad couple of days. My son-in-law’s nephew (just turned 30) has been diagnosed with Motor Neurone decease and it seems to be running wild - he had his first twinge in November and is now finding it hard to even get out of bed.

Then, my Mum (she is 93) has a friend who recently lost her husband and is undergoing tests as she is quite poorly herself - well this friends young relative jumped in front of a train at the beginning of the week. Has really upset me mum as you can imagine. Makes you wonder why some families sale through life and others have bad thing after bad thing.

This in turn has made my old friend Twitcher run riot. Glad to say it has calmed down once more. The physio who runs our PD gym classes teaches us ‘mindfulness’ and I back in the day did meditation. Have to say when PD is off, these two things really help. Especially meditation.

When I was looking for my dad, I contacted the 82 Airborne museum and made a friend of a a lovely half Japanese lady Amikitoo - her mum and dad met at the end of the war - her dad was in the US Navy We have remained good friends ever since.

Hope you are going through a good phase.


#13

Hi, Eve. I extend my sympathy to you for the anguish you have endured at the suffering of others. I think much of life is a matter of luck, which seems to play favorites, but is good or bad for people at random. Unfortunately too many of us suffer too much bad luck in a lifespan.

Twitcher–hah! I like that. Some of that good old English wit. Yes, meditation helps me too, so I try to do it every day. I refer to my “off” times as being in a slump. Slumps hit me nearly every day about mid-afternoon, so when I lie down and meditate for 20 or 30 minutes after exercise, I usually feel better.

I’m feeling especially high today because it’s my birthday. Both my son and I were born on March 10th–twenty-six years apart–an example of that luck I mentioned.

May you enjoy good days for a change.


#14

Well hope you had a good birthday and your son too.

My Dad used to call me his ‘Yankee Doodle Dandy’ - yes, you have got it - Mine is 4th July!!!

I don’t know if you are aware of the latest trials for a cure failed - we had a two programme series about it and we were not told of the final result until the latter part of the 2nd programme- well at my PD Gym Class yesterday someone told us they had heard someone else is taking over - lets hope it works - although I imagine it will be selective for those being allowed to have it.

Keep well.


#15

You are a regular Yankee Doodle Girl!

I have more hope for UK medical research to find a cure, since your fine NHS probably has a stake in doing so. Whereas, here in the U$ofA, our medical industry stands to continue raking in wealth as long as people suffer from PD, so the big business of our medical health may be very content to avoid a cure.

Be well.