[boomer]

Hi my name is Dermott, screen name Boomer and now on some forums so lucky. I have been on the forums for about 4 yrs , particularly Build UK for MND/ALS.
I recently had some amazing changes in my condition and thus I am now wanting to be proactive within the PD community.
Basically I was diagnosed with non-typical MND/ALS back in 2003/4 , but recently was put on Sinemet with some great gains , confirming a Parksionism differential diagnosis offered by one of my neuros some 2 yrs back.
I have fiiled out the evaluation test on "patients like me" Iam 44 yrs old and have stage IV Parkinsons. I would enjoy your input on my condition and to meet you all.



Here is a copy of a post I put on the ALS boards and emails sent to my friends.







Seems like great news on my progress!!!!!!!!!!!!

Here is a copy of a letter I sent out to my friends and family across the globe.

journal starting 10/6/07

Two years ago this September, I changed to Dr Caress. He is the director of the ALS clinic in Winston Salem. Previously I had been under Duke hospital.

Caress gave me a differential diagnosis at that time of Parkinson Disease, Parkonsism as the umbrella heading is called can cause virtually the exact same symptoms as ALS.The basic trembling that most people connect with PD is just a one symptom attributed to having PD.

I took a drug called Sinemet and immediately had improvement to the point ,although my walking was slow, I started to work out rather than "do physical therapy"
This was short lived and within a couple of weeks ,I had returned to my previous condition. These drugs made me really sick and I had trouble taking them etc...

So, to date on my last visit a few weeks ago to Caress, he labored on the point that I had a " non-typical form of ALS" similar to PLS and not as exact as ALS. A diagnosis that I had been hearing since day one even at Duke. However he was unsure and he mentioned he would like to think again and go back to the parkinsons and try the Sinemet, I told him although I had good results short term it made me sick..........and the conversation pressed on.
However, Caress told me again that I had "Tourettes " a diagnosis I had previously scoffed at, when he mentioned it on previous visits to him!!!
Tourettes as you are aware causes tics or vocal symptoms and is inherited. Too most it is assumed you have to swear and shout but only 5% of sufferers have those symptoms and it normally ceases at adult onset.
My Mom is apparently a sufferer as she constantly makes a humming noise! I have a facial grimace freeze which I am sure you that have met me have noticed also a short vocal hum tic.

The cause for this is too much Dopamine in the brain which works with the neuro-transmitters that controls movements.
After speaking to Caress and coming home I researched Tourettes and yes the neuro was correct. I have "typical Tourettes" it was always assumed that both my mother and I had some type of nervous complaint.

I decided to check on tourettes and ALS , to see if there was a connection. After about a week of study, I came up negative.
Then like a light bulb coming on I connected Tourettes and Parkinsons..............Parkinsons is not enough Dopamine ,causing the symptoms I have...........not just roughly but exactly.........the breathing problems, swallowing(dysphagia) , early tremor, stiffness, Dystonia and its 3 types , freezing of body parts etc. Infact there are over 30 symptoms associated with Parkinsonism also known as Parkinson plus disease and a sub set Multiple System Atrophy.

I reviewed over 50 websites on this disease and for about a week , became as knowledgable as I could on the variations of Parkinsons from the basic tremors associated in early stage onwards.
The main documents that set criteria for Parkinsonism as issued by the World Wide Medical Association I double checked my symptoms against the list and hit positive on the following:

Dyspahgia(swallowing disorder)
Tremor ( earlier stages)
Shuffled gait( earlier stages)
Akinesia ( inability to initiate movement)
Rigidity
Postural instability ( balance/falls)
Gait freeze
Cervical Dystonia (head pulls down to chest)
Oramanacular Dystonia ( My tongue moves slowly sideways) Dystonaia is basically abnormal movement due to pain/ muscle spasm
Multifocal Dystonia( assorted body parts effected)
Fatigue
Impaired dexterity with fine motor skills
depression
Slow reaction time
Short memory loss
Acting out dream occurence
Dizziness
Joint pain and stiffness
Constipation and gastric immobility
Weight loss
Abnormal breathing , particuarly when asleep

Now heres the kicker..........I spoke to the office of a Professor in St louis who works on researching Dopamine levels and how it affects us! They confirmed Dopamine levels fluctuate and I could have easily had too much when younger and now not enough and that the Tourettes tics are now habitual and my body knows no difference and they continue.
Also that Sinemet (cardoba-levodapa) works for a short time only, hours , days or weeks at certain doses and has to be regulated continously thru the slow release type or upped constantly to keep ahead of the curve. And this explains the short gains on Sinemet I had 2 yrs ago.
A Dr in Atlanta has confirmed these findings in his papers and it is widely known that Sinemet has unstable results.

So, I am excited that I do not have ALS , but Parkinsons..........which is no walk in the park with the strength of the symptoms I have, but is not the looming death sentence of ALS. As you already know when the breathing muscles are affected like mine with a Motor Neuron Disease( like ALS) its not too good !!!!!!

I have ordered the Sinemet. ............as it is much cheaper, buying it in Pakistan than thru my insurance.
Soon as it arrives, I will take it religously and ride the side effects the best I can hope fully they will be short lived. I went to my Dr last week and she has refered me to a local neurologist , so he can reguarly monitor me, rather than drive 3hrs to see Caress and the expense of seeing a diagnostic type Neurologist.

I have tried not to get too excited about this and infact only told Jackie ( my wife) last week. I do not want anyone to be dissapointed if i do not see any type of relief from these symptoms............However if any change is apparent then it is a very high probability that I have Parkinsons and not ALS...........which is the best news realisticly possible in my situation!
I will keep you posted!!


update 6/20/07

I picked up the Sinemet from walmart on Thursday 14th. The prescription had to be written by my neuro and my local Drs were not allowed to write it.So i still haven't recieved my order from pakistan
I started to take it immediately, the dose taken has been tripled from the one taken 2yrs ago.
The next day the family were amazed to see twitching in my feet and firing like jumping in my left leg, by the next day I could raise my feet from the ankle joint towards my shins, although ratchety and slow they were moving............i have had no movement in my feet for about a year.
Saturday afternoon I walked unaided across Sandys grass with a lot less foot drag and much better balance...........once again I believe those watching could not believe what they were seeing. I went in the pool , unaided pulled myself onto the floating bed and was kicking my legs pretty well.
The sickness I experienced with the drug was apparent on day 2 to 4 with the first dose of the day...........but now no side effects...........which is great..........these drugs really made me feel lousy before.The nurse came into day and suggested that because I am on a higher dose the drug is in my system longer and I may not be having the side effects with constantly introducing the drug on a once daily basis( if I have made sense)
Monday I regained more movement in my left hand fingers and can type with two hands again, all be it slowly with the left. I estimate a 25 % gain of strength in this hand and find it easier to grip a fork, bottle of water and such...........at present fiddly jobs stillseem a challenge.
Swallowing is easier and I find chewing less hassle and food and particuarly thin liquids like water are definetley going down easier with lot less choking and faster eating.

The breathing I can not monitor without coming off 02 and the bi-pap when resting, I plan at a later date to get hooked up to a 02 monitor for 48-72 hrs and monitor to see if my levels no longer drop below the dangerous 89% level as they were before being put on the supplemental breathing equipment.

So all in all...........I am having great results, PD although at the degree of symptoms I have is no walk in the park ...........it is a much better outlook for longevity than ALS. How many of my friends out there with the ALS diagnosis are mis-diagnosed and could be experiencing PD .I urge them to not give up and try Sinemet.

At present I have great hope that I continue to improve and although these improvements may not be regular on a day to day basis or last indefinetely, Sinemet levels can be raised up to a capped safe level to keep symptoms diminished. The only drawback is that in 70% of sinemet takers the symptoms return after no set period, normally within a few months to few years and the drug becomes inaffective in transporting dopamine across the brain to the neuro-transmitters that control movement.
But I will take any improvement I can get. Also it is very likely that motor neuron disease/ALS is not the cause as there has been no proof that one gets the slightest improvement when administering dopamine(cardodopa-Levidopa) based drugs like sinemet to these sufferers .............

well thanks for your support and reading this lengthy appraisal of my gains , I am thankful to Dr caress for his ideas on this and I have found out he infact wrote a book on mis-diagnosing ALS............I really struck lucky when I was refered to him!!!! My family Dr . Dr Figeuroa has been a brick to me, thru out my illness and I publicly recommend her to anyone.


My family, especially Jackie are the real beneficiaries from this and any future gains I may have.

update 1st July

6 days since I used bipap at night.........the ultimate goal in ALS is to preserve those diminishing muscles. PD so I have been instructed exercise is good so ........I am using my own muscles at night to breathe........no pain in the chest or tightness like I had been experiencing prior using the BIPAP.

Still using 02 24/7 but it will be interesting to see if my sat levels drop if I come off it for a short while..........we will see???

Walking is about the same as the 1st week on Sinemet, I am much more balanced, getting gait freeze and still fatigue but not like pre-sinemet.

Swallowing is awesome .......thank God my PEG( feeding tube ) was delayed for insurance reasons........I was choking on virtually every mouthful and reduced to eating thick liquids ..........now I only choke 1 in 10 , chewing is not hard work and moving food to the back of my mouth seems almost normal.
And i can drink water without choking it up my nose......hooray

left hand is great a few coordination probs but 50% stronger.

[reverett123]

You be one tough hombre, my friend! Honored to have you.

Just wondered if your docs said anything about agonists like Requip instead of or with the Sinemet?

Your post made a good case for spectrum disorders. It is hard to believe that all these afflictions are discrete conditions.

Hang around and be an inspiration. It doesn't pay much but it is noble work.

[Thelma]

Hi Boomer

I am really glad you have made it here I wasn't sure if you would receive my email or not. These are a great grouping of peoples that not only listen to you but respond with their own stories. You will find this much different than Build as there are far more people here. Paul hasn't gotten the other site up but it will be eventually but this one is the best for you .

I am really glad you don't have Als but not so glad you know finally that it is Parkinsons. But you do have a final diagnosis and that will make it so much easier to bear.

I won't be round after Wednesday for awhile, one ot two weeks perhaps but I will look for you if I can get a computer in the hospital.

Take care and again welcome to Neurotalk

[maryfrances]

Welcome Dermott!!

Nice to meet you.
I just turned 48.
I've been diagnosed w/PD for two years last June.
I take Mirapex.
It isn't easy.....It is a roller coaster ride.
Best wishes to you.
Hope you are doing well.

Mary

[EmptyNest68]

Hi Dermott...I am Steph, 39 yrs old and diagnosed w/PD in April 2003. I am also on Sinemet, recently from 3 daily to 4 daily. You have had a hard road from what you write, hoepfully things continue to improve for you. Someone metnioned trying agonists, they are beneficial, if you dont mind the side effects. Sinemet just seems to work the best for me!
Exercise IS also beneficial-i Usually work out a little each day and haven't for the past 3 weeks now, and am really feeling the repercussions of inactivity. A little each day, even if it's just walking.
Good to meet you, take care!