Interesting chat

[drew410]

I have just come home after seeing my consultant. During our chat he said that for someone who has had Parkinson's for 13 years I'm relatively in good shape - note relatively. Everything is relative! He is of the opinion that the reason for this is that I went and had myself checked out as soon as a symptom manifested its self namely slight tremor right hand. The sooner it can be diagnosed the better for the patient. Sounds obvious but how many people do you know who put off going to the doctor's until it is too late or at least detrimental to their condition. I know a few.

[Debfrmco]

Yeah right? I've had PD over 15 years and I do believe we with PD know more than the normal Doc and/or PA! I am also told I am relatively in great shape for 15 + years! Lol and I suppose it is all relative......?!

[drew410]

Congratulations. You know what I mean, in relative terms! Be well

[drew410]

Hi joealt, My email says you have left 4 comments but I cannot find them

[Joealt in reply to drew410]

Interesting.

I went to the Michael J. Fox Foundation web site to read up on Parkinson's disease after I was diagnosed. On the Site they mentioned a Parkinson's research study. I was refered to Northwestern Hospital, in Chicago, where I was given a complete onceover. I think it was the DAT scan that sealed my fate. I am glad to be working with the MJF Foundation because I don't have Healthcare coverage. I'm not sure what I'll be doing after The Study is completed.

[Court]

My first comment is - how lucky were you to have a chat!! I usually barely have time to sit down.

I tried for a diagnosis when I noticed a tremor in my right hand. The diagnosis of Parkinsons took quite a long time as I was tried on drugs for other things first. Also, when diagnosed, took a while before right drug was found. Have been on this combination of drugs for the longest time and it seems to suit at the moment. But it is all relative!

[drew410]

I am very fortunate now. My consultant gives me time. Usually Elaine joins us as a memory nudger and for her opinion which is valued all while having a cup of coffee. I bet you think I'm dreaming!?!? I thought so too the first time. When I lived down south it was the 30 second treadmill....NEXT.

Up here they know you. Call you by your first name, make you feel welcome. This may sound trivial to some people but it is not. I look forward to going! I am not making this up. The model set-up they have established is being copied throughout the NHS it is said but I fear the cities in England will struggle with that concept.

It's a sunny day for me today.

[Court in reply to drew410]

You are so lucky. Think I will move to where you live. All that and a cup of coffee as well. Sure no one recognises me, never mind knows my name and they certainly have no idea of what treatment I am on. They have to read my notes.

[drew410 in reply to Court]

Well Court, you could do a lot worse than moving up here. In our village the English/Scottish ratio is about 40/60 . My wife is English but I was brought up in Angus having been born in Aberdour, Fife.

Common theme for migrating here is sense of community, people talk to you, brilliant housing for the price, good weather (on the East side anyway) and for me of course NHS Tayside.

[Court in reply to drew410]

Can't think of anything better. Unfortunately family commitments keep us in this neck of the woods and will do for the forseeable future.

Never mind. I can always dream.

Sue

[wordworks2001]

My neurologist also says he is amazed at the slow progression of my PD. My initial experience was very different than yours, Drew. I began having tremors in 1992 and they were diagnosed as Benign Essential Tremors. I was started on propanolol and it helped for a while. By 1998, the tremors were much worse and accompanied by freezing, shuffle steps, and difficulty getting up from a sitting or laying position. I was afraid I had ALS so it took me a while to get up the courage to see a doctor. Once I did, he said I had PD. A neurologist confirmed the diagnosis and started me on Sinemet which made all my symptoms disappear for about two years. Since then, I remain on Sinemet and have had many different drugs to augment it. I have also had physical therapy three different times for several weeks at a time. I do concur that early diagnosis is important.

[shasha]

hello drew -

i think i had pd a long time before i was diagnosed - mostly due to the symptoms were not that outstanding - i.e no tremor at all but juat problems with my shoulder and writing - which no one would put down to pd unless you know- also balance - i fell down the stairs and cracked a vertabra in nv 2007 - which i was very bad for 6 months - all leading to me not really knowing that i may have had early pd - it was only after i came to france that the walking and stiffness became more appparent - so was then sent to a rhuematologist - then for traction and physio - and only after none of the stuff worked was sent to a neuro - in jan 2010 who dx me straight away so that wsat least 4 years when i had it but was not aware - mostly due to the lack of tremor --

[Susie01]

Thanks to all of you for sharing. I tried to take a look at everyone's location before I chimed in! Not sure since the maps are so small, but I was not sure there was anyone in the US in the group that commented.

I am in the US and the medical system here is not about helping people, but about how much money they can make as they run us through like cattle. I started having symptoms a full 7 yrs. before I was finally diagnosed by a wise neurologist who was not afraid to get down to the nitty gritty and be brave enough to make a diagnosis!

I think if I had been somewhere else, I might have been diagnosed much sooner and it might have slowed the progression, who knows...I was told by more than one doctor that we did not want to jump to conclusions...by another that I had neuropathy. Even worse, I am a nurse, I knew something was very wrong, I had to first find my answere searching the internet and had narrowed it down to either MS or PD. Finally, I found an MD who gave a care...

[drew410 in reply to Susie01]

Susie, it is very sad that medical people are into it for monetary gain.I have noticed that a lot of "information" sites for PD and other diseases from the US are backed by pill makers.

In my case I think the original consultant made a lucky guess but I am so glad he did.

My current consultant was not so sure I had PD so he sent me for a DAT Scan which proved positive. It was only after that when I explained my early disgnosis did he confirm that was the reason my progression was so slow. I wish I could remember the original consultant's name. I would like to thank him.

There are always good guys around - finding them is the trick.

I think you are the first to reply from US.

Be well

[PatV in reply to Susie01]

So true but I'm not sure about slowing the progression. Unless the stress of not knowing speeds the progression. As the song goes, "Always Look on the Bright Side of Life" haha. My story is similar. An observant and caring physical therapist insisted I see ANOTHER neurologist. Then dx, I had to find a neurologist who gave a damn ! I'm fortunate.

[par004]

Like a lot of people I've had to contend with docs who diagnose everyone using the SWAG THEORY . . . . Scientific Wild Ass Guess !!

[drew410 in reply to par004]

I like that. SWAG in UK means stolen money LOL. Sounds to me like the US medical fraternity in the main are into SWAG in one form or another!

[Susie01]

It was interesting when I went back to my Internist who did not want to pin down a diagnosis and told him I had been diagnosed with PD, he had to prove it to himself by going through all of the physical markers. He was baffled, but did agree that it was PD! I have seen him since 2003, but he just did not pick up on things, but neither did the first few neurologist Up until last year, the only person who really seemed to catch anything was the Physical Therapist when I went for a pre-employment physical. She had asked me to do something with my eyes closed. When I opened them she had a look of horror on her face and said that I had serious balace issues that needed to be addressed...

Drew, in the US, no one has said the first word about the DAT Scan, it amazes me...

[Hidden in reply to Susie01]

I also had a Physical Therapist who kept encouraging me to see a neurologist.

Physical Therapists have been the most helpful.

I have never heard anyone talk to me about a DAT Scan.

[maryalice]

I had the same problem with not being diagnosed for about a year. Then I was referred to a Neurologist. I'll never forget that appointment! He walked in the room did a few test and looked at the tremor in my right hand. He said you have Parkinson's Disease and told me to come back in a year. then he just walked out. Needless to say I tried other neurologist, but I still haven't found one. I can't find a Movement Disorder Specialist either. Can anyone help.?

[ParkinsonSpouse in reply to maryalice]

Hi maryalice,

I'm surprised that the neurologist diagnosed you with PD after a brief visit. My husband was having many strange symptoms so I searched the internet for one of them & found one reference to someone feeling shivers on the inside & that person was diagnosed with PD.

We decided to go to our family doctor, who did a couple tests & agreed with us, that my husband probably had PD. Our dr. was going to start meds; but because of what I learned when I searched online, we decided to go to Cleveland Clinic to see a neurologist to be sure. The neurologist did some simple tests & thought it might be PD. He prescribed amantadine which worked so well that 80% of his symptoms went away. That's when the neurologist diagnosed my husband with PD.

The neurologist said there's no real way to tell if a person has PD, other than dissecting the brain (if I remember correctly), but if 75% of the symptoms leave/are relieved with meds that it's very significant & probably PD.

Supposedly, there are other illnesses that are similar to PD; in those cases, PD meds don't help.

Later Azilect was added to my hubby's meds. It's very expensive & hasn't proven to help us much as drs. had hoped. But, since my husband was/is in the early stages, the neurologist thought it might help. And we think it did. Because of sleep problems, amantadine was stopped & for the last 5 months, Azilect is the only med my husband is currently taking. We've been pleasantly surprised that many of the original symptoms my husband experienced haven't returned. We think it's due to the Azilect. He still has problems, slowness, feeling fidgety, sleep problems have come back, & he has a lot of back pain & stiffness.

I don't know what state you live in. Have you done an internet search for

[maryalice in reply to ParkinsonSpouse]

Thank you for your interest. I got in touch with the Parkinson's Foundation and they gave me the names of a couple of people to get in contact with in my state. I've emailed them and I'm waiting to hear back from them. Hopefully they'll be able to help me. Blessings.

[cabbagecottage]

We knew nothing about Parkinson's , but when my husband started to have a problem struggling etc . I looked it up on the internet ., and asked the GP if it was possibly Parkinsons The GP treated him for High BP . It took 3 years for the GP recognised that my husband did have it

I have heared of many others who have had the same problem . .

We are now under the umbrella of the NHS seeing the consultant and GP regularly , but so much is still down to us the people who live with it in one way or another ..

[Hamish]

Hi Drew, as fellow golfer I have paid extra attention to your post, in Aberdeen. I'm sure your consultant is correct, earlier we spot things the better, I also felt a tremor in my right hand was a tell-tale sign. Over a period of 4 years or so I shared my concerns with 2 different GPs, in 2 different practices, they both gave the same diagnosis, " definatley not PD, your too young, its Benign Essential Tremor", I really feel at GP level there is a shortage of knowledge, but once you get to PD nurse level things dramtically improve.

Either way we have to deal with it, so lets keep going and get those handicaps in the single figures, I'm at 10.5, so realy going to try for 9.4 this season.

best wishes Hamish

[drew410 in reply to Hamish]

I do realise how fortunate I was in getting the early correct diagnosis. My GP did try and put me off seeing a consultant but as I was paying I was able to insist. One of my better decisions.

RE golf I played to 9 when it was the usual 4 ball 18/36 hole winner take all jobbie (they accused me of wearing spurs LOL) but put a card in my hand for a competition - I played to 12 if that. Unfortunately my legs will not carry me round 9 holes and standing still is worse. My big regret about having this lousy disease apart from the other obvious stuff.

Watch out for the big fade and the dreaded duck hook.

Keep swinging as long as you can - I do miss it. Get that single figure handicap - not many do! The average handicap in UK is 18 for non pro's,

Drew

Be well

[gran5-]

When I look for a provider, whatever their credentials are, I seek these characteristics:

1 willingness to spend time discussing my issues. Sometimes it means that I have to wait a little longer while another patient gets the same, as long as the wait is not from over scheduling.

2 Curiosity and determination to find answers in this icky unpredictable disease. I will not return to someone who listens to what I am presenting this visit, writes an Rx and is ready to move on to the next patient.

3 Have a sense of humor, please, please. Life is tough enough without working with a sour puss (could not think of a better description.

I have been fortunate to have found a neurologist, even tho' I have to fly from Santa Fe to LA to see him, and an anesthesiologist who specializes in pain management, here in santa Fe and is interested in all methods of approach, western, eastern and all inbetween.

So, altho the PD still has the upper hand, the people working with me are on my side. The beat goes on! JK