Newly diagnosed


#1
My wife as been newly diagnosed with PD.

Any advice you can give in coping with the disease in its early stages would be appreciated.

Current symptoms are an intermittent tremor in her right hand, a stiff neck, a "heavy" right leg and foot when sat down for any period of time, slow deliberate movements.

She has been prescribed Rasagiline (Azilect®)

Thankyou

#2
hiya,im ali welcome to the forum,im 42 years old and have been dx for 11 years now,it seems along time since i was first dx,but i remeber i had my family around me to help me ,even though mom,bruv and dad was very ill at the time.family and friends are the most important thing to u ,specially when first dx,and also bein able to come on a forum,able to chat to others with the same condition.i think at the mo,gettin as much info as u can get would help a great deal,and bein there for her as well,it not just a shoack to the person ,it is to the family as well,some times people forget that part,stick togeather and u will cope through it.thats all the advice i can give rite now,be there for one another x:smile:

#3
Thats good advice Ali.

A stiff neck was one of my first annoying symptoms but I find gentle neck exercises which the hospital told me to do alleviate it greatly. Mainly gently turn head from side to side as far as possible without forcing too much.

Hopefully medication will speed up movements, it has helped me a lot. I was diagnosed about 6 years ago aged 57.

#4
Thanks Polly. My wife to has a stiff neck and is exercising it as well as having massage. Seeing doctor today to get first dose of Rasagaline.

#5
Thanks Ali. How has your condition progressed since you were first diagnosed? I appreciate everyone's experiences are different

#6
What my wife and I are finding difficult after the shock of the diagnosis and all the emotions raging around our heads is the uncertainty of how the disease will develop and how quickly. It's also hard to come to terms with the fact that the disease has no cure and will therefore not go away. I know no two cases are the same but it would be good to hear some positive stories where medication has slowed the progress and/or helped with the symptoms

#7
I was diagnosed six years ago aged 44, but thinking back had symptoms for some time.

Its difficult to come to terms with the unknown - how quickly it will progress. The advice I would give is to make sure you are there for your wife when she needs help, but dont smother her. I hate it when people see me struggling and just take over - I know they are only trying to help, but it would be so much better if they would just ask if I need a hand otherwise I just feel useless. Sometimes its winning that struggle that keeps me cheerful and feeling that I am still in control.

Progression for me has been slow, but its a condition you are always aware of and it can be quite dehabilitating. On the other hand, it makes you appreciate what you hold dear in life and fight to maintain some normality.

The medication does help - but I think it is more a case of learning to live with the condition and not letting it take over. You have to adapt to a new way of life and not see it as the end of the world. At times it feels like it, but that just makes me want to fight harder to maintain a "normal" lifestyle.

The fact that you have taken the time to check out this forum proves that your wife is a lucky lady to have you around. Make sure she feels comfortable asking for help when she needs it, but also allow her to work out easier ways of doing routine things.

#8
I think one of the slogans is " KEEP MOVING " / easier said than done for a lot of people . My husband suffered with neck . shoulder problems even from a young man , he is 77 now . He had all sorts of treatments which was no help at all ..

He swam daily all his life believing it would help ..

Once he started doing the rolling , turning , stretching he also on Sinemet it improved enormously . The stress of living with Parkinsons doesnt help ..

#9
Hi! I was diagnosed 10 years ago at the age of 48. One piece of advice I would share is that those who are very close to you will probably not know how to respond to you physically and emotionally. They won't know whether to offer to cut your food if you appear to be struggling or wait for you to ask for assistance. Your spouse, particularly, will want to show they love you and wish to support you but may inadvertently be doing the opposite! I think if I could turn the clock back I would have explained when, where and it what ways they might help at a much earlier stage. Sometimes I need help with shoelaces- my husband waits to see whether I do it unaided rather than using that infernal phrase..."Can you manage?" Guidance from the PD person can avoid frustration and irritation with those for whom this also new, unchartered waters.

#10
I've been dx two and half years. I was prescribed sinemet straight away because of right-sided tremor of the arm and leg (and whole body for that matter) which developed soon after a car accident. I know it is not effective for tremor in everyone so I am lucky. The sinemet took away all but an intermittent tremor in the right arm and also brought me back to "normal" mentally whereas before dx I was all of a dither, could not concentrate and got easily flustered. Before meds. I also found that I was walking "funny" towards the end of a morning's ramble for want of a better description. The meds. took away the stiffness particularly in my hips which had culminated in bursitis in one hip. We are all different and as it is a whole body condition it affects us differently, e.g. I was walking slower and changed the group I walked with but as I walked fast in the first place I did not end up walking slowly as soon as perhaps someone else but I had noticed a tendency to trip easily with my right foot and broke my wrist that way. Frozen shoulder is another symptom which can be identified with hindsight. I'm a bit stiffer now but none of the other symptoms and debating whether I need to up the meds or the exercise or both.
When you think of all the different symptoms you might you begin to realise that there's no point in thinking about bridges you might never have to cross anyway.

#11
Thanks everyone