[YogaLife]

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.

[soccertese]

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.

[paula_w]

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!

[jeanb]

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

[EnglishCountryDancer]

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.

[krugen68]

[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 ).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

[jeanb]

ECDancer,

You said:

Originally Posted by EnglishCountryDancer

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

[reverett123]

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.

[EnglishCountryDancer]

Originally Posted by reverett123

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.

[olsen]

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