Disease progression


#1
When my wife was diagnosed a week ago her neurologist made reassuring noises about her being able, with medication, to lead a "reasonably normal life for 15 years or so". He also said he was optimistic of a breakthrough in drug treatment within the next 5 years that whilst not offering a cure would dramatically enhance the suppression of the symptoms. He also said the progression of the disease was measured in decades rather than years.

Friends have all said about the need to stay positive but I wonder whether they and the neurologist were simply trying to lessen the blow.

I'm trying to think of life as it is now and block out the future but the uncertainty is difficult to deal with.

I know that every individual's symptoms are different but I'd like to hear from sufferers and their partners as to whether there could be an element of truth in what the neurologist has said. Have others diagnosed some time ago managed to live the "reasonably normal life" the neurologist talks of.

#2
Hi reasonably new to the forum I was dx 4yrs ago medicated for the 15mths or so progression is different from person to person but in general positivity, moderate exercise and meds help:grin:
I know it probably feels a little bleak right now but after you get over the initial shock (takes awhile!!) there is light and life can continue, with some accommodation of the PD, for what its worth I'd tell your OH to enjoy as much as she can, it is as good as the meds. I still work full time and believe that keeping occupied helps too!
My progression is still happening but who knows what will happen in future but if we can enjoy the present it seems like a plan to me. It maybe naive but it gets me through.

I hope you both have a good Christmas and hope the neurologist is right on his timescales and optimism :smile:

#3
Hi I was digosed at age 41, now 50 (almost 51) and still working. I will explain the how and why a bit later. Disease progression depends on many things. Your age, relative health, types of medication able to be tolerated by the patient. In my case, it was reasonably slow for about the first 5 years. I didn't need to tell anyone, because it wasn't immediately obvious. I was on a combination of Levadopa and Dopamine Agonists (DA)and on the surface everything was fine. But the DA was my Achilles Heel and due to compulsive gambling, I had to cease taking any form of DA. This meant an increase in Levadopa along with Entacapone and this became combined in Stalevo. After 7 years, the medication began to wear off and I was only "on" for 1 hour out of every 3. I had to reduce my work hours to half a day and I don't believe I could continue working. In Oct 2010, I underwent Deep Brain Stimulation (DBS) surgery. It has been a godsend. Back working full time, a significant reduction in the dosage of Levadopa (200mg vs 1000mg) and I hope to continue working for at least another 5 years.

The neuro, I believe has given you guys advice that you can use as a positive, it's not all doom and gloom!:smile:

Regards,

Andy

#4
Hi Davech,

I'm 72 - two and a half years since dx - and my neuro said 10-15 years when I asked a direct question. At the time I assumed this was based on the normal life span and I pointed out that my mother lived to 100 under the misapprehension that he was talking about how long I would live. I later clarified with him that he meant the time during which increasing amounts of meds. would control symptoms adequately and since dx have not experienced anything to suggest that I will not get 10-15 years of reasonable "preservation of function" by which time I will be in my mid eighties which is not bad going for anyone any way. Certainly I am now
very fit and well - off to Nepal in February - with just an occasional tremor in my right arm.

You do not say what age you are as this affects the decision as to what drugs to start you off on, if you need them now which is why I started this with my age.

#5
Hi I have read that many people have what is classified as mild parkinsons and this can go on for a very long time without it progressing much at all.My h had mild pd for about 5 yrs and then it progressed a bit and is now moderate parkinsons after this is about 10 yrs now. He is a more difficult case because he is also blind, for separate reason, and so the whole exercise thing is very difficult for hime. I just read today on this forum someone who is doing very well and wrote a book called There is life after being diagnosed with parkinsons. I cannot find his post a second time, maybe the moderator could find it for us. He says once diagnosed he changed his lifestyle did loads of exercise and kept stress aaway and he seems to have gone one for ages with not much symptoms. love sunray

#6
Thanks all for your positive messages. Still at the stage where you cling to any hope that life will not change too much too quickly

#7
Of course the diagnosis is a bombshell, but actually I think it's quite realistic to expect that things won't change fast - my husband was diagnosed twelve years ago, in his mid-fifties, and is still working, travelling abroad a lot for work, etc. Proper medication has been very important - he didn't take any at all for the first few years, after that it's made a huge difference, and needs to be reviewed and altered as necessary. In the last year he's had a little physiotherapy input and that's been very useful too. We've made a few minor modifications around the house; he doesn't drive, but then he's never driven anyway! So really, life goes on, and I hope the prospect will soon feel a bit less desperate.
Wishing you all the best for the New Year!

#8
davech - thats an important point - time. normally pd is one of the slowest developing diseases - your wife has already had it for many years before diagnosis. there is plenty of time to adjust and learn about it. there is nothing you have to do right away that will make any great difference. i know its hard, but the main thing i believe your wife will need from you is to be a source of stability and support and above all, normality. Going by the medication things haven't gone very far very quickly and are likely to continue at a sedate pace. The longer the progression takes, the more time there is for new treatments to extend that time and functionality. You will probably only see your specialist once every six months or longer - they know that nothing sudden is likely to happen. it might seem crazy to suggest it now- but try and relax a bit, go and do something fun. i don't mean to be impertinent, so sorry if it seems that way.
best wishes
t

#9
Thanks guys .. Appreciated

#10
i am 46 yrs old parkinson suffer nearly 4 yrs back start this disease.now my symptom not control.my medication is requip xl 14 mg.i am waiting to good research result.good medicne:laughing:otherwise early depature from this world

#11
Hi Mannarakath.

Although we are all different I would like to give you some hope of living with pd. My husband was diagnosed with this very difficult disease at aged 39 just when he had been given promotion, he managed to keep working until aged 46 and then he joined what we used to call the club of switching from the fast lane of life into the middle lane where you get to appreciate many things you were too busy to be aware of before. We got in contact with other early onset people and would go for pub lunches and trips out, later we formed a branch for this area and started a short mat bowls group with a challenge cup, he went sailing with a group of other disabled people and many other activities.
My husband was always good at photography and spent many happy hours entering local and national competions, he also played table tennis, wrote poems and entered shows with his hanging baskets and other flowers.
Before PD he was very active at sport playing rugby, football cricket and ran a marathon. He was also involved with the scout movement the TA and the PTA at our son's school. He was often down about his illness but we used to have lots of good British comedy tapes and board games to play to get him over these times which didn't always work but usually he would feel much better after.
Some of our friends say he has done more in his life since PD than they were ever likely to do.He is 68 now and although after much heartache he is in a nursing home, he is going to college two days a week with his carer's and goes fishing during the summer months.
I don't know if you have a spouse/partner but if you have and they are fit you will have a head start on us as I have a chronic back condition which limited us as well.
I know only too well how difficult and challenging this condition can be for everyone but we have made some very good friends and had some great times including group holidays so chin up and be the boss of your PD.
With my very best wishes and good luck.
vivian

#12
manakarath - have you not been prescribed levadopa if requip not working?

#13
Vivian
thank you for sharing your story, I found it very positive and moving.
T

#14
Hi Turnip,

Thank you for you comment you are the only person to reply to me so it was lovely to have some feed back. Just some information on myself so you know that I also did my bit, I have just retired from being chair and many other committee positions from the branch we started with a few other friends. It was a very happy positive group and we have many happy memories. I also have an assistance dog called Lady she is a black lab and soon to be retired so I will have another dog, lady will still be part of our family she will live with our son and I shall see her daily. I go to schools and groups and tell them about her and the dogs for the disabled charity,and of course I tell them about life with PD and how she assists me.When my husband was at home and could'nt speak loudly he would hold up a clenched fist which was the sign for her to bark and let me know he needed me, they now train all the dogs with this command so you never know where useful tips lead to.
best wishes
vivian

#15
Vivian Thank you also for that. It was great to hear about assistance dogs too - didnt know they worked for PWPs

#16
a black lab would be an ideal companion, may get one when i retire. not only do they bark, they can change telly channels with their tails ( i had a lab as a child).

#17
Hi Summersky,
I don't know if anyone with PD has a assistance do but I am going for some training sessions in readiness for my new dog so I will ask about that. The charity does partner the trained dogs with adults with disabilities and children with special needs, it is worth a look on their web site www.dogs for the disabled and their main office is in Banbury where they have open days. There is also another organisation which was on GMTV this morning I can't remember their name at the moment but you could google it.
A thought for you all my husband always said if you don't use it you will lose it, he still plays scrabble and beats most people and on the wi he is very good. He also went to the Kilder trust outward bound place in Devon this year for 4days and he is 68years old now.
My suggestion to you all if you are not involved in any PD group which I know is not for everyone do get involved with national or regional office staff as progress in getting a better understanding of parkinsons still has a long way to go which I find really frustrating, so get out there and rattle a few cages, get involved in speaking to local colleges and if you can nurses doctors and other therapists, ask you doctor about students that come to their practice, we have had many come to our house and although my husband is now in a nursing home they come and talk to me about my disability and of course I talk a lot about our life with pd. Check with national office if they are having any training sessions in you area as most people like to hear from personal experience, I know that the local teams do take people with pd with them but you also need to involve carer's to get the whole picture.
Sorry for going on as a newbee I have a lot to learn about writing on this site but I always feel very passionate about PD and I hope to hear one day that where ever you go you don't have this constant battle to get people to understand this condition.
best wishes
vivian

#18
Hi everyone. Newly dx in nov at 52.i have cramp pains all the while which makes me feel tired.but I've started
Swimming two to three times a week.still feel the same but Im doing it to keep mobile not to ease the pain.
One point though the jaccuzzi worked wonders for the pain whilst in it.

#19
you might want to keep near the side if you get cramps,not very nice getting cramps in the middle of the deep end! went swimming with my 10 yr old last week and had to suddenly reach for the side when i got cramp in my foot.

will try jaccuzzi at next opportunity!

#20
Thanks for that turnip.looking at the time of reply.it looks like you don't get much sleep either.feeing all cramped up at the moment but still managing to get about.if you don't use it you lose it.im determined to keep moving.i did notice that my left arm had taken over jobs that my right used to do.so using right more but it feels like a pulled muscle all the time.another pain to deal with.also changed painkillers to capsules to swallow easier.this pd can be tiring can't it.