Hello from a newly diagnosed PD recruit


#1

Hi

diagnosed last September, big shocker, but now getting my head around it.

I am 55. I have not been prescribed any medication yet, looking forward to that one lol razz

Went to my first Parkinson's support meeting yesterday. Wasn't sure what to expect but everyone was welcoming and really helpful. It was so beneficial, mentally, to see so many positive people still living their lives to the full. Will definitely be going again.

This forum is great as well so much invaluable information.

I have to say this is a club I never thought or indeed wanted to be part of but it is what it is and thankfully there are so many good people offering great advice and support. Keep up the good work. I know it's been a great help to me in these early days of PD.

Dory


#2

Hello Dory, what a mighty fine fish you is. This is indeed a club for people who don't want to be its members - but are jolly glad they are.

Don't be frightened of meds. If you can't do all you need to or most of what you want to , then take the drugs.

Fin up!

Semele


#3

Hello Dory welcome to the club i am in agreement with Semele I call it gimmey the drugs they only control the symptoms but that's better than nothing. 

I joined this forum not wanting to be a member and yet I find I can actually help others who are having trouble getting to grips with their dx.

The support groups are so important I first went to ours expecting to see everyone really old and looking ill. Now I have applied to be branch secretary and at 49 I am the youngest member.

Any time you need someone to talk to I will do my best to help.

BB x 


#4

Hi Dory

 Welcome to the club, I was DX last June at 57 years old though nuro thinks I had it 5 years before,

Finding this forum was the best thing to come out of having parky as I've found out more on here than all the " professionals put together have told me. Also the sense of humour most members have can change anyones mood for the better,

so welcome and live well   Cc


#5

Thank you for your replies.

Semele, I don't like the way your looking at me lol, yes keeping your sense of humour and being positive is the key, I think, to feeling as good as possible.

doctor has said we will discuss meds at our next appointment. He is referring me to his NHS clinic as I originally went to see him privately after having 3 NHS appointments cancelled!!!

Thanks for all the kind words, positivity and the warm welcome to the club

Dory x


#6

Hi this is my first post, I was given a pd diagnosis in Dec 213 by neuro Dr and have been taking a slow releasing pramipexole tablet since then and felt so much better , my symptoms  are tremors more on my right hand then left ,slowness in walking,sleep problems,short term memory loss, fatigue,restless legs
I had a dat scan last summer which has come back negative, just had my first appointment in 13 months with the neuro Dr and she now says that it can't be pd because the scan is definitive but she is not going to take me of the tablets because I feel so much better , I don't know what to think now surely the symptoms speak for themselves can any one out there advise I feel so low now not knowing what's wrong with me


#7

Welcome to the forum, Libby Jane!

I'm not the most knowledgeable member of this group in medical matters, but it was my impression that no scans were really definitive for PD, that they were used to rule out other ailments.  Maybe I'm wrong.  However, all the symptoms you describe are associated with Parkinson's.  Pramipexole is what I took first also, and it reduced my symptoms to almost nothing!  If it is working for you, that is probably more important at the moment than labelling your illness.  (I know what you mean, though, about not knowing with any certainty exactly what is wrong.)

I wish you well in finding answers and in dealing with the symptoms.  You have done the right thing in accepting medication early, I believe.  I've had this disease for 18 years, and there are still surprises along the way, but I am living the same life as always.  We all learn to cope with and sometimes to overcome our symptoms.

Sincere regards,   
J


#8

Hi J of Grey Cottage

I read your response to Libby Jane who is recently dx and felt your positive response has really helped me over the last couple of years. Now on a low dose of sinemet and feeling like my old self again. Had to find a new neuro after a lot of frustration with appointments etc with last one but now feel much happier.  Like you I feel Azilect has really helped and hopefully it will mean I need less levedopa. Only a half (100/25) tab with food the first week twice per day had my husband commenting on my big improvement and it took no time to lose most of my symptoms. Glad to hear you are doing well.  

Kind regards

Libby

 

 

 


#9

Hi, Libby (not to be confused with Libby Jane)!

Thank you for your post.  I always feel great gratification in knowing I have helped another pwp in any way.  When I read the "About Me" section of your profile, I was surprised by how much our two cases of PD have in common.  If there are different varieties of PD, you and I definitely have the same one.  I hope your case follows the same course of non-development that mine has taken (18 years without significant advancement). 

I'm so glad you found a new neuro!  Decisions on treatment are life-changing to us pwp.

Best wishes,

J


#10

Hi J of Grey Cottage

i certainly hope I am following a similar pattern to you. Enjoyed a cruise before Christmas and it was so enjoyable looking at another this September.  This time I'd like to try out at the line dancing lessons which looked a lot of fun but at that stage I wasn't feeling so steady!  Amazing what a little med will do!

best wishes

Libby


#11

Libby, I'm so glad to hear your meds are working!  They make us return almost to our old selves again.

I'm doing a lot of travel, too.  On the theory that PD will eventually advance, I am trying to see what I want to see of the world while I still feel up to the rigours of travel.  At the end of this month I'm taking a riverboat cruise through parts of Belgium and the Netherlands.  Then I'm booked on a garden tour travelling throughout Oxfordshire.  In the fall my sister and I are taking a Tauck tour (a company in New York) to Alaska.  That one consists of a week of touring by bus (or motorcoach, as the brochure writers always say) followed by a week on one of the Princess cruise ships.  I'm working on two trips for 2016 as well.  My sister will accompany me to Hawaii to celebrate my 70th birthday in February.  Although we have no reservations yet, a friend and I plan to take a walking tour in the Dordogne in France, then spend a week on our own in England's Lake District.  If my health remains stable, I may get one more journey on my 2016 schedule.

With best regards,

J


#12

Hi J of Grey Cottage

Gosh J  you have a wonderful schedule ahead of you. makes me think we need to get travelling seriously again.  We used to do a month in Europe or Canada/USA every year over a 12 year span. Big trips from Australia but over the last two years have felt it might have been too much but feeling so good now am getting that travel bug back again.  We went on a Princess cruise around NZ in late November and caught up with my brother in Melbourne at the same time.  Next one is to spend time in Singapore and return home on a Princess cruise ship in October. It will be share our experiences.

Best wishes

Libby


#13

Hi J of grey Cottage

Your  travel plans are inspirational, particularly the walking tour in France.  We did six canal holidays, hiring boats with friends and taking 3 weeks at a time, we did 3 in France, and one each in Holland, Ireland and the last was on The Thames in 2012 before I was dx.  It was a lot of fun. 

My neuro said I have had an excellent response when I visited last week so I now don't go back for six months.

Kindest regards

Libby

 

 


#14

Hi, Libby --

Sorry to be so slow in replying.  I was away on a short trip to California, my home for 52 years, and I wasn't online often.  I attended a college reunion and a few meetings with other friends -- lots of fun.

Your travel ideas sound great!  I really think we must do as much as we can as long as we can in travel.  My walking tour of France had to be postponed, but in its place, a friend and I are going to visit the San Juan Islands near Seattle, which neither of us has ever seen before.  Meanwhile, the long trip I mentioned (to Belgium, the Netherlands, and England) is fast approaching.  I probably won't be very active on the forum over the next month, though I'll check in every so often.

My best,

J


#15

Hi J

Thanks for your news. California must be a special place for you after spending so many years there. We spent a year in Ottawa Canada  on teaching exchange and had a sister in law living in Vancouver so visited quite  lot.  On one visit we took in the San Juan islands, a lovely trip on the ferry. We also sailed in a power yachting event out of Roche Harbour, a great experience.

We have been over in NSW to spend a week with my sister and her husband, two flights, so a long trip from WA. It was a wonderful week but I have returned home with a very sore foot and a suspected stress fracture.I find out tomorrow results of my bone scan.  That's going to slow me down when I have been travelling so well. Thems the breaks! Haven't checked the site for awhile either.

Enjoy your trip to the Netherlands, another place we have enjoyed visiting.

Best wishes and look forward to hearing how it goes.

Libby

 

 

 

 


#16

Hi, Libby --

Just returned a few days ago from 24 days away.  The river cruise through Belgium and the Netherlands was beautiful!  We saw numerous cities and small towns on our shore excursions:  Maastricht, Hoorn, Veere, Rotterdam, Delft to name a few.  Then I joined the garden tour based in Oxford, with day trips out to such gardens as Waddesdon Manor, The Old Rectory, Rousham House, Lime Close, Pettifers.  Those extensive estates gorgeously landscaped take one's breath away.  Though I'm not much as a photographer, I came home this time with 160 pictures!

One highlight was having tea at the home of Sir Jeremy Morse and his wife.  He was Colin Dexter's friend and the inspiration for Inspector Morse of detective fiction.  Our group of 12 was just the right size, congenial people from all over the U.S.  Overall, it was a wonderful trip!

 


#17

cool

      Well Libby and J , I will type this quick or you will be off around the world again, , the two of you must have travelled more miles than Eric the Bounty hunter the most  travelled human ever, over  1 000 000 and 6 miles and of course I am delighted to read of your exploits,, what is a ploit by the way, and how do they change into exploits, unfortunately my version of  pd has introduced motion sickness to the rest of  his buddies, so after 4 or 5 miles I bring up every thing consumed in the previous 3 weeks, oh joyful my feel towardingly  the evil inhabitant, BLACKHEART OF FED, who resideingly lives in the grey foldens of my faulty brain, not only have I lost my job my car and all the benefits included there, but I cant even travel as a passenger or , well you will know of projectile vomiting,well this is Balistic vomiting I can hit a bucket from 6yards, and thats blindsided by a 6ft fence , it does not effect my  mobscoot, as I am in charge and I can see the ground, so I will ask does anyone else suffer in this way, and as the drugs to combat the awful retching are not compatible with my other meds, including  DUODOPA.

,                 ONWARD AND UPWARD GUYS,,,,,,,,,,,FED

 


#18

Libby Jane,

Please don't upset yourself over this DaT scan. It is the only scan that comes close as a diagnostic tool for Parkinson's BUT it relies completely on the skill and experience of the person interpreting the image. So critical is this that in the whole of the USA there are only several medical facilities regarded as being competent enough. I maybe out of date with my info but I believe it isn't even approved by the American FDA for the diagnosis of Parkinson's disease. So I am surprised your Dr was so convinced.

Basically my understanding is that a negative scan result does'nt always mean you have'nt got Parkinson's.

Take heart that you are responding well to the Dopamine Agonist, this is by far the better diagnostic method and suggests you may well have idiopathic Parkinson's disease. While I have every respect for the intellect, knowledge and skill of our Physicians, particularly Neurologists I'm afraid the lack of certainty in all things Parkinsonian leads me to not take anything at face value.. This is of course my personal opinion, I am no expert either and  seek neither to teach or preach.

May I ask about your health prior to diagnosis Libby Jane, in particular mental wellbeing, any periods of stress/anxiety/depression ? I am interested in stress as a causative factor in 'Parkinsonian' symptoms and possibly the involvement of other neurotranmitters rather than just dopamine. 

I fully understand your anguish Libby Jane and hope it soon passes.

Love and mercy be with you.

Uncleniggs


#19

Hi, fed old friend --

By the way, put the emphasis on the "friend" part. 

I used to have motion sickness that could be set off by any little thing.  And if I tried anything so foolish as going deep sea fishing, I was hanging over the rail before the dock was out of sight!  When PD struck, it hit my stomach very early, giving me gastroparesis (ultra-slow functioning of the stomach).  This condition was diagnosed, but no one knew at the time that it was part of PD in my case.  I began taking Domperidone, which is often prescribed for PD patients with stomach problems of all kinds.  As a side effect, I no longer have motion sickness!  I have not so much as felt queasy on a vehicle or craft of any sort since I started taking this med. 

The FDA in the U.S. has not approved this drug, so my doctor gave me the contact info. for a drug company in Canada.  But it is commonly used in most parts of the world, including the UK, I believe.  You might ask your doctor or nurse about it.  However, it is a pretty strong drug with possibly dangerous side effects for some people.  All I can say is that it has been a great success in my case of PD.

J


#20

 

         Hello J, thanks for the info but you are correct in your view that Domperidone  is not PD compatible,  least not for me,I feel I am becoming tolerant of my main Armament in my war, Ddpa each day  BLACKHEART advances , and my carefully constructed mine fields booby traps, snipers and forward planning, are one by one destroyed,its a case of 2 forward and 2/10000th back, only tiny each hour that passes, but when I survey the wreckage of the past year it really worries me, however I wont dwell on that, I was reading in our Daily paper ,the authorities in Oregon are attempting to disperse the Harbour seals in seaports along the western seaboard regions of  your county, how do you DISPERSE large colonies of wild creatures that have learned to live alongside the most dangerous of all life forms on our planet, humans, they simply do not fear us, big mistake,and they will pay the ultimate price  methinks,.My dear wife has just gone up the wooden hill to Bedfordshire,I remember my Mother saying that to me when I was  6 yrs old J and I would reply ," dont be daft mum, Bedfordshire is a large English County,,thousands of people live there, they wont all fit in my bedroom" but she persisted with her strange meaningless incantations, like "BAH BAH BLACKSHEEP HAVE YOU ANY WOOL,,!??  NO BU??ER OFF",, oh no need for that, WELL I  DONT HAVE ANY BLOODY WOOL  SO BU??ER OFF, oh right, but I will take measures preventing you from wool production in the future,,,OH ERR OH MMH WELL i MAY HAVE 2000 FLEECES IN THE BACK SHOP IF YOU WANT TO HAVE A BUTCHERS??? but you said you did not have any,,ANY WHAT,,wool wool, I distinctly heard  you