How did your PD progress?
 

Hello All,

I am new to these boards. My husband was disgnosed with young onset PD at 41 just a couple weeks ago. Its a heck of a Christams present and we are both just coming out of shock. There is not one group in the Dallas area for young onset PD, and yes we do intend to start one once we get our feet with this situation, however for the time being I have many questions.

Right now I was wondering if any kind person would be willing to share a little about their own story. It will help us connect with you and feel less alone, but also I am wondering about the different ways this disease progresses over time.

I was wondering how old you were when diagnosed? What were the early symptoms? What were the later symptoms and how long did they take to progress? Are you on a Levodopa drug and if so When did you begin it?

I'm happy to go first.

18 months ago David noticed when he was in triangle pose during yoga his hips and thighs would tremor with exertion. We did not think it meant anything. 12 months ago I noticed when he was mad or stressed or hungry his hands and sometimes torso and face would shake. He always shook a little even as a teenager so we thought it was an essential tremor perhaps getting worse with age. He also slowed down his movements.
We started going to doctors 8 months ago when he began noticing weakness in his right hand and his left index finger would extend when he wasnt paying attention. By 4 months ago his left wrist would also extend and his elbows bent up at the arms. By a month ago his right arm stopped swinging when he walked and now when he becomes upset or stressed he gets a full on tremor in his whole right arm.

We are on Azilect to hopefully slow the progression though we know it may not help. We are dubious about getting on a Levodopa drug until we have to because of the side effects. Is this correct thinking?

Thank you again. I look forward to getting to know you all and appreciate the fact that you are here.

diagnosed at 46, symptoms likely at 41. now 56.
played soccer and pretty much not slowed down for 6-7 years with no meds, then started on mirapex which could never tolerate side affects. last 3 years have gotten to the point where i need meds - selegilene + sinemet - while awake otherwise very rigid and mentally impaired - severe fatigue, slow thoughts, hoarse, memory impaired. when medicated, you wouldn't know i had pd but have had to give up competitive sports. unmedicated, initiating movement is an effort, typing is slow, i'm tired, everything is an effort. some days are ok, 10% really crappy. stopped working in year 9, working on getting disability.

my advice is exercise, exercise, exercise. i lift weights, recumbent bike, walk/jog. research studies currently in progress on affects of vigorous exercise.

everyone unfortunately is different

hope for the best, plan for the worst. stay as well informed as possible. noone forced me to start on any med, i started when i had to based on severity of symptoms, i wish i had started sooner.

first symptom was frozen shoulder, then lack of arm swing. what spurred me to see a doctor was reduced dexterity of my right hand. neurologist diagnosed me in 5min, 2nd neurologist said she knew i had pd just from my face. symptoms have progressed from right side to left in last 2 years.

pre-motor symptoms
 

Hello,

Welcome to the club you never wanted to join. We didn't either but some of us have been here over a decade and many have been here for years.

Even tho your husband's diagnosis was at age 41, there are many pre-motor symptoms/ Did he have consistent constipation? sleeping disorder?
slight memory difficulties and a certain "scattered ness" in speaking planning? Did he have gastro-intestinal problems, acid reflux?

It's highly believed these days that pd starts in the gut. Was he ever diagnosed with Irrtable Bowel Syndrome? Is he less likely to smile?

i was diagnosed at 42 but i believe Ron's source in his post about having it up to 25 years before a motor symptom appears developing in the digestive and elimination systems, where smooth muscle movements can be impaired and toxins, funguses, parasites,and inflammation can occur -yucky but true.

i hate to say this, but because i'm a smart aleck with hope that you have a sense of humor "people with parkinson's are full of s***."

if it helps many here have had it for many years. if you add it up all the way back to constipation, it would be in my twenties when i noticed it, tho i remember my mother used to give me enemas. That dates me - so when does PD really start? I am 60 now.

As peg says , impacted p*** is toxic.

i think you should seek a second opinion. see what another movement disorder specialist would select to treat you with. Dominergic drugs can be agonists or levodopa. Although not true for everyone, i have a question [a big one] about mixing sinemet with agonists or anything extended release like sinemet CR and comtan. most doctors do start you with an MAO inhibitor like azilect. then add agonists, and comtan, and extended release of it all or combinations thereof.

I've had it for more than 20 years and i recently discoverd that sinemet plus other domaminergic drugs cause dyskinesia . i take only sinemet regular now but started with agonists and selegiline, then when it was time for sinemet , they keep you on both to keep the sinemet and "dyskinesia away as log as possible." for me, that was precisely what gave it to me...taking too many dopaminergic drugs make the delivery inconsistent and it's hard to balance it.


lots of food for thought!

another story
 

YogaLife,

I was diagnosed eight years ago at age 51 with a tremor in one finger and no arm swing when I walked. Nine years ago I had a frozen shoulder. Twenty years ago I stopped swinging my right arm when I walked. Thirty years ago I started losing my sense of smell. And as Paula mentioned: constipation. I had constipation PLUS insomnia and depression at least thirty years ago (or more) as well.

Over the past eight years my tremor is much worse - I have bad leg tremors & restless leg pretty much all of the time. I have insomnia, bladder urgency, stiffness, drag a foot, akathesia, slowness, and pain. If i am under medicated, i have burning at the nerve endings (neuropathic pain). There are more but those are the main symptoms.

A future word of warning about the agonists (Mirapex & Requip), some people end up with obsessive compulsive behavior. At its worst it can manifest in out of control gambling, sexual addiction, shopping addiction. I had it but it was working on the computer 20 hours a day. It is a small percentage but just be aware of changes in behavior.

I’ve been on levadopa for 6 years now.

But let me ask you – how long has your husband been on Azilect? There are two opportunities he may still have, depending on the study. (sometimes studies that are looking for de novo patients will accept patients who have been on meds a short while and are willing to stop the meds.)

1. The MJFox Foundation PPMI study is looking for de novo patients in an effort to identify biomarkers. Participating in this could help all people with pd.

2. There is a clinical trial for a substance called Cogane which is looking for de novo patients. This new treatment is taken orally and crosses the blood brain barrier and in earlier trial is very promising to help pwp.

When I was de novo, I joined a clinical trial for a promising new treatment. I was in the trial for two years, and it ultimately failed. But 500 of us from that trial are still followed and participate in additional studies to add scientific knowledge about PD. Honestly, I'd join PPMI or the Cogane trial if I were eligible.

And my last bit of advice is to agree with Soccertese - Exercise!!

Good luck!

Jean, http://www.pdplan4life.com

Not young onset
 

Although my husband was diagnosed in his early 60s, so is not Young Onset, I am writing to reinforce the view that in some people although Parkinson's is present, it does not show all of itself, for decades before diagnosis. Secondly,to mention exercise.
Perhap thirty years ago,perhaps even longer, my husband developed a tremor in his right(Parky side)foot if annoyed or excited. This was identical to the tremor he now has in a more pronounced form in his hand and foot. There have been other small episodes over the years,which we now realise were probably Parkinson's related. In his teens he was a runner,dropping it in his twenties only, to start marathon running in his thirties.This meant serious training and he would often run 60 miles a week.Achilles tendon trouble plagued him and it was after a lay off from serious running that the hand tremor became obvious:starting first whilst running. He did not think much about it and then then it became more pronounced,being quickly followed by a dragging foot.This was put down to a running injury.Then,without us really noticing the masked face appeared,and the slowness.
Now,my theory is that my husband would have shown the full symptoms of Parkinson's much,much earlier if he had not been a serious runner.We are now five and half years since diagnosis and about seven years since we began to suspect Parkinson's. Despite medication:18 mg RequipXL plus Madopar100/25,three times a day the tremor is pronounced, but he still runs and on a visit to London last week he was walking up the stairs, whilst the young and fit were using the moving staircase.He stills continues his hobbies and plays the melodeon and Morris Dances. Perhaps, not as well as before Parkinson's but still better than many. We still have long haul holidays and on one of these. I asked him to rate his quality of life out of 10 and he said "Ten" So do not despair there is a good life for many years after diagnosis and by the time things become difficult, a cure may well be within touching distance.........BUT do remember the importance of exercise and a positive attitude. Keep an eye open for the non motor symptoms especially depression,which is often part of Parkinson's so be on the look out for it to get it treated early. I just hope this little report emphasises the importance of exercise.Every little bit counts.

...whatever works for you ....
 

[QUOTE=jeanb;729065]YogaLife,

But let me ask you – how long has your husband been on Azilect? There are two opportunities he may still have, depending on the study. (sometimes studies that are looking for de novo patients will accept patients who have been on meds a short while and are willing to stop the meds.)

1. The MJFox Foundation PPMI study is looking for de novo patients in an effort to identify biomarkers. Participating in this could help all people with pd.

2. There is a clinical trial for a substance called Cogane which is looking for de novo patients. This new treatment is taken orally and crosses the blood brain barrier and in earlier trial is very promising to help pwp.

And my last bit of advice is to agree with Soccertese - Exercise!!



Diagnosed in July this year, I currently take no meds and have put my hand up to try to get on the Cogane trial.

I would search the archives on here and learn from other's experiences (without scaring yourself witless :D).Form your own opinion of the current drug regimes, and map your own way forward. Everyone has their own coping mechanism, so trust in your own instincts and TRY not to think about it 24/7

off to raise my nicotine level :D

ECDancer,

You said:

Quote:

Originally Posted by EnglishCountryDancer (Post 729108) Although my husband was diagnosed in his early 60s, so is not Young Onset, I am writing to reinforce the view that in some people although Parkinson's is present, it does not show all of itself, for decades before diagnosis. Secondly,to mention exercise. Now,my theory is that my husband would have shown the full symptoms of Parkinson's much,much earlier if he had not been a serious runner.

I also believe that is true. I have a sister-in-law who, like your husband exercises a lot. She is dx'd with focal dystonia, but I see early PD symptoms. I believe that vigorous exercise is keeping full symptoms of PD at bay.

Krugen68, Good for you!! I hope you will share your experiences in the Cogane clinical trial. (Please PM me if you like) And I hope with all my heart that Cogane IS "good for you" and will eventually be available to help all pwp.

Jean
http://www.pdplan4life.com

YogaLife-
As you have probably already figured out, each of us has our own version of the same story and that is reflected in our individual view of what PD is and what we can do about it. We may all be right.

Here's mine- Noticed a tremor in my right hand in 1992 at age 39. DX as essential tremor. Difficulty walking in 1999 led to PD DX in 2000. Started on requip immediately. Sinemet added shortly thereafter. At the apex of my drug involvement I was taking 32 mg requip plus 800 mg sinemet. I am at present taking zero requip and 1500 mg sinemet. My intent is to whittle that down as well in coming months.

My experience has led me to believe that the concept of PD as a neurological disease is wrong. It is a combined disorder of the immune and endocrine systems that results in damage to the nervous system. There is also a tangential role for the GI system but the immune and endocrine systems drive it. PD is a slowly progressing problem but two things are known to accelerate it. One is chronic stress and the other is infection. If you read through the archives here you will find much discussion of both.

A nutshell summary- 1) Stress and the chemicals that come with it aggravate our symptoms and speed our degeneration. Note that overdoing exercise is a stressor. 2) Infection anywhere in the body can trigger an inflammatory reaction in the brain. Urinary tract infections and dental ones are common.

If you wish, you can read my two blogs for more detail than I want to burden this forum with.

Along with moderate exercise and stress and infection awareness, you might want to investigate intermittent fasting. And keep hope alive. A new view of PD is spreading, thanks in part to this little group of malcontents, and we may actually be on the verge of great things.

Stress is very much an individual thing.What one person finds stressful another might find exhilarating,challenging and exciting. The amount of exercise that is a stressor for one person may not be for another. To my husband running on a treadmill for 40 minutes at a brisk pace four times a week and dancing at least once a week, as well as walking the dogs is enjoyable. I cannot keep up with him and I do not have Parkinson's. It was forced exercise that was found to be helpful in Parkinson's, so it is a matter of listening to ones body and a very careful balancing act.

symptoms of PD
 

Reinforcing the "everyone responds differently" to this disease process (which I believe is directly attributed to the cause of one's parkinson's/parkinsonism), my husband cannot perform extreme exercise. With too much exercise, he develops apraxia (severe speech difficulty), becomes disoriented, and experiences increased balance and gait problems. Very difficult for him to judge what is too much exercise, owing to the fact he has always been an "extreme" personality.

Prior to development of this disease process, my husband was also an occasional marathon runner; in addition he ran at least 5 miles a day, 7 days/week. At present, he runs at least 1 day/week (maintains short, slow distances are now his specialty), performs Tai Chi at least 1 day/week, does Pilates 2 days/week and runs on an eliptical machine at least 5 days/week for a 20 min/session. If he attempts to run and do Pilates on the same day, he develops the above difficulties.

He developed symptoms 4 yrs prior to diagnosis at age 56(diagnosed aug, 2004 @ age 60). First symptom was ennui or what he described as a feeling of profound emptiness and loss of ability to experience joy. His next symptom was mask like facial expression, then a right hand tremor and shuffling gait (last 2 symptoms appreared about 1 yr prior to diagnosis). He started on AMantadine and Azilect in 2004. Sinemet 100/25, 3X/day was added 2007. He currently takes Sinemet 100/25, 1 &1/2 tablets 3X/day and has continued amantadine and azilect. (we re currently trying to wean him off amantadine. ) He has never had GI problems, though at present he takes 600 mg Magnesium Citrate/day, which is a hefty dose. May well be impacting his GI function, eliminating constipation.

I have found this group to be generous, gracious, kind and courageous. You have discovered a wonderful collection of individuals. madelyn

I cannot tell you what it felt like to come back here today and see so many detailed responses. Thanks :)
When my husband comes come from work I will show him all of your posts.

How about alcohol? Has drinking shown to be a bad idea with PD?

As for the questions asked of me...

Paula- Yes. I have also been wondering if the PD has been rearing its head for a lot longer. My husband has always had shakey hands, insomnia and digestive issues including constipation. He was an ER Nurse for 16 years, which is a highly stressful job. He used to be over 100 pounds overweight and never exercised. 4 years ago he began exercising and lost the weight. 3 years ago he began practicing yoga and tai chi and a year ago he switched to working from home as a nurse for an insurance company. It's gentle hours (9-5) and low stress. 3 weeks ago he was diagnosed with PD. We consider ourselves lucky to already have so many things in place.
As for the movement disorder specilist, we made an appointment. The earliest they could see him is August 3rd 2011.


Jean- This is the beginning of my husband's 3rd week on Axilect. He just moved up to 1mg. He has always had high blood pressure and is on a medication for that. SInce he got on the Azilect his bp has been very high so we may need to get off it regardless. David is a little nervous about doing drug trials but we'll keep talking about it.

English Country Dancer - Thanks for the hopeshot :hug:

reverett- I am very interested to read your blogs. Being a yoga teacher I always find a holistic point of view tends to make more sense that splitting the body up into various systems and isolating those systems into tiny pieces and parts. David and I were just getting into water fasting over the summer but then we stopped. I agree it may be a good idea to try it again. Lets stay in touch.

Progression for me
 

I was diagnosed in 2006 at the age of 55. I had been seeing an oncologist because I was diagnosed with breast cancer in 2003 at age of 52. I thought when my hand started to tremor it was the cancer spreading to the brain. The onc is who sent me to the neurologist after doing a brain MRI. She didn't think it was cancer tho. The neurologist told me PD. He didn't want to start me on medication till I couldn't function. I haven't been back to see him since.

My symptoms have progressed. It is hard to type now and dressing takes a lot of effort. My foot started dragging at some point. It takes a lot to run the vacuum. Even turning clothing right side out or taking wet clothes out of the washer takes a lot of effort.

What makes it worse is the recurring rashes since 2006 and the problem with IBS (irritable bowl). I am afraid taking medication for PD will make this worse. So for now I do nothing. In 2006 I was walking an hour on a treadmill till my toes started curling and had to stop.

I guess that is it. Where I'm at right now. I should have kept a journal and recorded my symptoms for it's hard to say at what point things started. Typing this I remembered the toes curling/treadmill problem. If I had it to do over I would have kept a record of symptoms.

journaling
 

marciaj makes an excellent point. While far from what it should be, I have kept a journal of sorts and it has been of great value. This is particularly true if one self-experiments.

calcium channel blocker drug
 

Have no idea how difficult it is to control your husband's hypertension, but you might wish to access posts on this forum discussing an antihypertensive drug, isradipine, a calcium channel blocker, which is currently in trials (i think) to determine if it is a disease modifying drug for PD. There is evidence the use of the drug is associated with decreased incidence of PD; I am unsure about its disease modifying effects.

YogaLife, just to be clear -- MJFox PPMI is not a drug trial, it is a series of tests where de novo people with PD are followed for several years (e.g. blood work, brain scan, spinal fluid test) with the hopes of identifying biomarkers.

Jean

Isradipine
 

Yes, I'm on this for my hypertension - Isradipine.
jean

Oh I see! Thank you for explaining this. I will tell my husband.

... I've spent hours googling this one !
 

[QUOTE=YogaLife;729178]How about alcohol? Has drinking shown to be a bad idea with PD?

There is a plethora of research on alcohol, dopamine and receptors, but I'm not sure of the real answer. You can find support for any stance out there. Excessive alcohol can be a causal effect of PD symptoms apparently.

I personally drink far too much, and find the first drink or two helps my tremor, but my foot drags increasingly as I drink more. However, in my defence, I don't have to take anti-depressants or sleeping pills :D

I guess a glass or two to help you relax is ideal, BUT I understand that alcohol interacts with certain meds, including some of the PD ones. That you need to check
Cheers :Crazy 2:
Peter

i drink a glass of wine daily and liquor once in awhile. noone lives forever.

My husband phoned up Parkinson's U.K help line about medication and having a drink.They said this was one of the most frequently asked questions.They said also that you really have to judge for yourself how your body reacts.He is on Requip and Madopar and has wine with his evening meal and a couple of pints of beer with his mates,once a week.Life is for living.

wonderful !
 

and inspiring. thank you.
Imad

Progression of PD
 

I was diagnosed 20 years ago at the age of 54.
(Paula, I have never said "had it up to 25 years before a motor symptom appears".)
My PD has developed slowly, my symptoms were very mild, cogwheel rigidity in my arms, dragging left foot, tremor when I got annoyed with a bad driver.
It was mild enough to continue my very stressful job for 5 years after diagnosis. I was in charge of a large chemical factory making the same explosive chemicals that the London bombers used.(organic peroxides). I retired at the age of 60 in 1997. not because of PD, I had always planned to retire at 60.
I did not study the disease much in the early stages, it was so mild. During my subsequent retirement, we were able to travel the world.
After about 10 years from diagnosis, the symptoms were starting to get more bothersome, and by then I had increased my sinermet from 150mg per day to 800mg. I started to study the disease and experiment. I think my decision to take 1,000mg curcumin per day from about 12 years from Dx, slowed progression considerably. My symptoms were still mld enough to continue demanding holidays right up to last year. such as 40 hours total flying time to Tahiti and back.
In the last few years, I have had helicobacter Pilori erradicated, and have taken care to avoid constipation by taking a fibre supplement and a polyethylene glycol lubricant. I continued to maintain a half acre garden for exercise. I take Manuka honey to avoid infection and fish oil also.
During this period, I was able to reduce my Sinemet steadily to only 150 mg per day. I also take Azilect, (1mg) Mirapex (1.4mg) and trihexyphenidyl
(4 mg) daily.
My major problem at the current stage is dyskinesia (uncontrolled movement. It means I have to go to the dentist or barber totally unmedicated.
Possible causes for my PD are
1. I started my career as a research chemist and made and handled some very toxic products, such as very unstable organomercury products, toxic anti fungicides such as organoarsenic products.
2. I have always had a very stressful job. Before I ran the chemical factory, I was in charge of 3 research centres 2 in the UK and one inthe USA..
3. In my younger days, I suffered from constipation.
4. I had been infected with helicobacter pilori.
What has slowed progression?
I suspect long term use of curcumin has had a major effect, and erradication of helicobcter P. avoidance of constipation have all contributed.
Unmedicated, I can still shower and dress myself, and as I mentioned, I can go to the dentist unmedicated. At 20 years my main problems are difficulty walking and dyskinesia.
Ron

sorry Ron, your linked article to Cure pD says symptoms can occur from 10 to 20 years pre-motor; didn't mean to imply you had that. Don' t recall where i got 25.

http://www.cureparkinsons.org.uk/cli...%20in%20PD.pdf

paula

side effects?
 

Thank you for sharing all of that Ron, I have never heard of that last drug, trihexyphenidyl. What side effects do you experience with it? I looked it up and some of them can be nasty, yet it has quite a high efficacy. I don't know why none of the PD experts we have seen have never mentioned it.

Do you not take dextromethorphan also? I thought that was one you took each evening.

Thanks again, sure sounds like this is working very well for you. It almost sounds like you do not really have PD, whatever that is (what they say it is)!

Dyskinesia
 

Hi Lurking,
Trihexyphenidyl (THPD) is an anticholinergic. You are probably aware that Dopamine and acetyl choline have to be kept in balance. So since our ability to produce dodamine is nearly totally gone, this delicate balance has been disrupted. The only way that can be achieved is to reduce the acetyl choline, for which we take trihexyphenidyl. When we take a cocktail of other drugs, it is difficult to assign any side effects to THPD.
I have not heard of dextromethorphan, so don't take it. You may be thinking of CPD choline or citicoline, which I used to take. I have had to get it from IHerb in the USA and gave up . I think it is quite a good sdupplement since it aids brain metabolism, and is used by doctors to aid recovery after a stroke.
Ron

benadryl
 

Dextromethorphan is the active ingredient in Benadryl, which many here take nightly in lieu of LDN.

Actually, Dextromethorphan is used as a cough suppressant and usually seen in Robitussion DXM. It can have a bad interaction with MAOB inhibitors such as Azilect. The active ingredient in Benadryl is Diphenhydramine.

I'm a nurse... It comes with the territory ;)

Curcumin
 

Hi Ron,

Can I take tumeric instead of curmerin ? And how much ? Right now, Im taking Prolopa 50/12.5 mg.

Thanks for your post!!'

Ronaldo

Tumeric
 

Hi Ronaldo,
Yes you can take Tumeric instead of curcumin. Tumeric is less concentrated than pure curcumin which is obtained from it. I have not taken Tumeric myself, so I can't remember the % curcumin. You will soon find it in a search.
Ron