Hello Help please!


#1
Hello there everybody My name is Kris and i am 38 and live in Bolton and have recently been diagnosed with PD. I am ok about it as it was suspected for about the last 3-4 months.

However i am really worred and I am really looking for advice from any forum members in relation to me struggling to walk, I mean I can walk but my left foot curves in and my left thigh gives way, and i was wondering if anyne else has had these type of issues and could give me any idea of any treatments that could improve my walking?

I have also had what i think is restless leg syndrome but since i have started on Pramipraxole this has improved.

The other thing that i have found is that when i am tired the more i feel the symptoms. Is this usual?

I still also go the gym but because i cannot walk i cant do as much as i used to ( i did a lot of running when i was younger!)Howvever I cycle instead but now after cycling i really feel my leg giving way so i dont know whether i am doing more harm than good as i come back tired and it starts to affect me yet my consultant says to keep exercising.

I know i have just joined the forum and I probably seem to be a bit full on, but I feel that i have not got much info on my condition and would welcome some advice.

In anticipation

Kris

#2
Kris,
Welcome to the forum. You will find people warm and knowledgeable people here who understand exactly what it feels like to be where you are.

I'll leave others with more experience of the impact on walking to comment on your specific questions about exercise. It is common that your symptoms will be more notable when you are tired (stress has a similar effect)

I understand what you mean about finding it hard to get information about the condition. This might be because the condition affects each of us differently.
I hope you can take some comfort from my situation. I was 39 when first diagnosed. I am 46 now and in pretty good shape. I am still working and can do pretty much anything that I used to provided I avoid getting too tired.

The time after diagnosis is hard and it can be scary and confusing. Take your time to come to terms with it. I look forward to hearing more about your situation.

Elegant Fowl.

#3
Hello Kris.

I recognise the foot turning in bit, my left foot does that and when I am tired my right ankle gives way and so my foot slides along.....!!

It is a matter of finding the right dose of the right treatment, and we all react differently. It will take a while for your current meds to help you (although strangely you can get some wierd side effects almost immediately)

My advice about exercise would be to not overdo it, but I'm in my mid sixties and never very keen on sports. I find if I push myself then I can suddenly get so tired that walking is like wading through treacle.

There are always people on here to talk to.

#4
Kris,

welcome.
DO not panic. All normal. I now use a stick on bad days: double wammy a) you can move people out of the way. b) it helps.
You need to get your drugs right. this requires patience and some vigilance.


At all costs keep talking and take it all steadily. SLOW is good.


mrs.t.

#5
Thanks for all the replys to my post.It is most appreciated it is realy nice talk over things with people who understand and i have to say you all seem really nice!!

As you may be aware. i am not the most patient person in the world and because I have had difficulty walking for over a year now i have become frustrated. I originally got sent to an orthapedic surgeon who said i had a chronic muscle tear but my neuro consultant believes this is part and parcel of my condition.

It really worries me as i worry about it getting worse, i have an appointment with my parkinsons nurse on wednesday so I will feedback my concerns over my leg and my new medication(prampipexole) then i really hope their is some alternative medication that will help.

Once again thnak you all for your kind words and encouragement

Kris

#6
Hi Kris

PD nurses are often the girls in the know. See how that goes and, as has already been said, take it from there. Good Luck!

Chris


PS I live only as few miles from you.

#7
Hi kris

I really worried like you at the moment.ive been shuffling my feet now for about 4 years.only 3 week ago the doc noticed I was shaking on my right side.he asked if I shuffle my feet so Im now to see a nueologist tomorrow .ive been on the net and I've got most of the non motor systems so like you I think I'm going to be diagnosed with pd.right away yo think of the worse case scenario .but I'm not concerned for me but for my kids one cerebral palesy and diabetic and one aspergers.i always thought I'd be there for them.

I drag my right foot more in the late afternoon and my speak gets more slurred when I'm tired.ive realised my left hand has took over the jobs my right hand used to do like washing pots,typing,painting etc

Just take your time but try to keep moving.just think if you don't move it you lose it.to be fair looking after the kids as probably done me good this has been coming on for a long while.

Sorry I've gone on a bit.there is a lot to take in with pd .but what I'm doing is typing in Parkinson's then any symptom I've got to see if it's related to it.

All the best
Twins99