Different Symptoms than "Average PD" - Anyone else?

[Writer]

Hi,

I was diagnosed with Young Onset PD at age 42 and am now about to turn 50.

In addition to PD, I have Rheumatoid Arthritis, Vasculitis and Diabetes. Sometimes I get mildly aggravated with people when they say I don't "look" like I have PD because my tremor is mild and my jerky movements are at a minimum. However, I DO have falling episodes, balance problems, walking issues (I use a walker) weakness, leg/back pain, sleeplessness and exhaustion as my overwhelming symptoms.

I'm so grateful to MJ Fox for putting a face with the illness of PD, but it is like everyone expects you to have the same symptoms as him! Am I crazy? Does anyone else feel the same?

Thanks for listening...

[Jeni]

I too was diagnosed in my early 40's about to turn 49 in July. I have RA, IBS and GERD. I am very lucky though right now, I have tremors on my left side, some balance issues, and sleeplessness and a lot of exhaustion!!!! I am tired all the time,,,,all the time. I take no medications right now, I am stubborn and want to wait as long as I can, I still work, drive and just take my time with what I am doing so I don't fall. My dr. insists I go on medicine but I am just not ready. I am hoping something else will come out better and save me.....wishful thinking...but you never never know.

[Hidden]

I often get told how well I look, in fact I look so well my DAT scan must have made a mistake eh ........ What I conceal is the fact I cant.raise a fork of food to my mouth and struggle to walk at times with my parky leg weighing 10 tons! I can't get to sleep at night and when I do I have really vivid dreams. But hey I still look good - cant be bad lol. xx

[Writer]

thanks guys, I was beginning to think it was just me!

[merlethegirl]

I have good days and bad. The pain I have 'over the counter' pain killers don't work anymore. I'm holding back asking for an Rx. Walking helps, laying down

helps........stretching and moving around......it's hard to do when your medicine won't kick in but I push myself and deal with it. It's getting to me.

I get tremors occasionally, tight muscles and dyskinesia(sp), dystonia sp) are a daily problem. I've fallen a few times...I just find myself down......in a split second. My legs stop working and there is never anywhere to sit down, usually in a store. Never any electric carts avaiable. I stagger and can't walk a straight line. People look at me and I just smile at them and explain that I have PD..................and so it goes.

[kath33]

i get bad neck bad foot my baance not that good i bin told depressiion can be sympton bit the tsblet make me feel sick do not want to try sgsin but doc dsud ii should i try and not let things get me down i dance andwatch bands i admire michael j fox he very brave he does good work i have his books any nore boojd thst sre good books bad typing sorry

[shanaandbear in reply to kath33]

Read John Pepper’s “Reverse Parkinson’ Disease”. He will give you comfort and hope....as well as great suggestions on how to deal with this disease. I’ve had it at least six years....I’m 71...can’t take the drugs because of the side effects. So, I am eating a healthy, mostly vegetarian, diet....exercising...doing mind games daily. Trying to stay positive. Best wishes! ❤️😘

[kath33]

has anyone else had their disabikity money cut an was told im ok to work bt eds but im not esa gave me a medical failed

[PatV]

I tell everyone I have it . Few tell me I look like I don't have it . Any more. My gait has gotten peculiar and my dyskinesia is bothersome (to me)! I feel I have regressed to the hyper kid that was always being told "Sit still!"

[CJ49]

I have "terrible" posture. I try to straighten out but my severe scoliosis and osteoarthritis doesn't help. Just 2 days ago I found out that my vertibrea on the bottom of my spine is missing a disc, and I have bone on bone, which presses on a nerve, so far it's not to painful that I can't bare it yet. ( I don't want to have spine surgery.)

The arthritis already tore apart my left hip and socket..(I had to have an artificial hip put in "further" than normal into my bone because of the deterioation of the socket.)

Another thing that really "bugs" me is that my neck "sticks out" and I look like a "turtle." When I try to hold my head up "straight" there's something that just feels like there's a big "knot" stopping me from keeping it straight.( I hate this the most).

My son and his family already treat me like I'm to "frail" and when they converse......they may as well be in a different state, because they "exclude" even "looking" my way when they talk.

Oh and I also had thyroid cancer, and had my thyroid extracted.

Sorry I am "dumping" on you,,,,,no one ever listens anyways.

[dubdiva in reply to CJ49]

Im sorry your going thru that. Im also cant keep my back straight and Im not sure what comes first the discs going or the stooping. My mother ahd it very bad (she had PD too) and U know that even when I was a kid everybody say stand up straight, and it wasnt till I git a 'looks loike PD diagnosis that I heard that many if us havve that issue. Thryriods issues are a nitemare as the other doctors blame everything on you thyriod (I have Graves) I ran aroud (very slowly and telling doctors somethings wrong, Im exhausted and they say see your endecronoligist and ask her ti reduce my tapazol as I couldnt keep awake and so the circle would go,,Its veruy hard with multiple diagnosis as I know for myself as it hard to know whats doing what and which meds make it worse, ect. Have your thyriod removed must have been traumatizing, aAnd I agree with your spine descision>r My pain management dr, said not does it not help in most cases but can actually makes it worse. as for other people I realize that they usuallysay stupid stuff like ' but you look well ,,is there parkinson group you can go to?

Ps I tried those dumb posture typr bras frpm dr lenords which kist mad em more uncomfortabe, but there must be a brace somewhere that will help , will have you in ypayers tonight

anniexx

[CJ49 in reply to dubdiva]

Thank you dubdiva. I always can use the prayers. Thanks for "caring." God Bless

[fishinggirl in reply to CJ49]

I'm new at this but I heard what you are saying. This journey we are on is not an easy one. We all have our own symptoms and experiences. I also hate it when someone treats me like I need help before I even try. I'm a big girl and know how to ask. Take care

[Mitagen]

Theres two types of PD; tremor dominant and rigidity dominant! The movements of MJ Fox are due to side effects of the medication called dyskinesias. Not the actual parkinsons at all! And not everyone gets the bad side effects, but most do eventually. Anyone who tries to discredit what your suffering, just gently point out their ignorance