Newly diagnosed


#1
I am 55 and on 31st Jan I was diagnosed with PD and since the have been put on a cocktail of drugs Madapor, azletic and nuepro patches. I really am not sure that any of these are really making a difference to my symptoms. My shaking in certainly contained , however, the pain I have in the mornings is still there, and I believe my confidence in walking has diminished. I have had a series of falls recently, all to the right side I have not been physically hurt but my pride has taken a pounding.

My consultant is very slowly upping my madapor from 125 four times a day to 225 five times a day. Should this help? A year and a half ago I was an avid walker and now i walk very slowly and tire easily. i have had to give up my job as a drama teacher and am feeling very lonely out here.

#2
Hi Gourse, and welcome!

I too was formally diagnosed in Jan after finding I had it in Dec. I am 56. I was put on Sifrol ER (= Mirapex in UK), and my symptoms cleared up almost immediately. My neurologist wasn’t interested in putting me on Azilect, and he wanted to “keep levodopa up our sleeve”, so I am only on the one drug.

Sorry that I can’t help re your symptoms of falling, except to say that a friend of a friend who has been diagnosed for 8 years had trouble with falling, to the extent that he has a service dog to help him. The chief neurologist in our area recentlyish saw that his gait didn’t look Parkinsonian, so checked him out and found he has HSP (Hereditary Spastic Paraplegia) as well as the PD. He has neuropathy in his feet (and legs??) from this, hence the falling.

I can only recommend you give the drugs time to make a difference, and also check back with your specialist regularly, in case s/he can determine more about your condition. Others here have more experience and will be of better help.

Sorry to hear you had to give up your job. Are you still able to help part-time, or do related volunteer work?

Wishing you all the best and hope you check back in here often.

#3
Hmm, the HSP = Hereditary S pastic Paraplegia (hope the board allows this or I will be putting in some umlauts....)

#4
hi gourse
5 doses of 200mg of levadopa is a high dosage for someone diagnosed quite recently. I am on 700mg per day after 5 years. its also a little unusual to be given patches this early. I am not saying this is inappropriate just saying it is unusual.

#5
Hi

Thanks for getting back to me. On the last visit to my consultant he said he was disappointed with my progress on the three 125 madapor daily. So every two weeks I'm to add one 62.5 to one of my four time a day 125, until I reach 250 five times a day !! I began adding a 62.5 to my morning dose two weeks ago and on tues one 62.5 to my evening dose. I really haven't seen much of an improvement. I am a fighter but have become very down about lack of reaction. Do not feel I m any better than I was this time last year when I wasn't diagnosed. The only symptom that has been controlled is my shake.

#6
Hi Gourse, thanks for your feedback. I am wondering what is considered the “max” dose of Madopar. I have not heard of anyone on 5 doses a day before, although I have heard that smaller doses more often work better than bigger doses less frequently.

A colleague finds his dosages of Sinemet either too low or too high – no happy medium.

In regards to your walking slowly, do you take smaller steps? Do you find it hard to walk properly unless you concentrate? Do you find it hard to start walking on say your right side? Are there other symptoms to do with walking?

Sorry that I can’t help more. Keep in touch!

#7
Hi Sheryl

Thanks for getting back to me again. I haven't been told what max dose did. When I find it difficult to walk my knees feel 'wobbly' I walk heavily on my right side and my legs can feel heavy. Have you problem walking?

#8
Hi Gourse, and thanks for the reply.
I asked my neuro what a normal dose of my Sifrol ER would be (i.e. what he was planning to titrate me up to). He said 4.5mg. This is listed as the max dose in the patient literature online. No dosage levels are listed in the pamphlet that comes with the tablets. I am currently taking 1.5mg, although I have been up as far as 2.25mg when titrating up, so am slightly under-medicated.

My walking symptoms occur if I am more than slightly under-medicated (average daily dose less than 1.5mg), or completely unmedicated (before starting treatment). They are:

- walking more slowly
- taking smaller steps
- stooped posture and left arm not swinging
- having to concentrate to walk tall and take bigger steps
- my toes curling up
- feeling like I am going to slip and fall in shopping centres with smooth tiles floors.
- having trouble starting to walk (i.e. freezing of my left leg) (have not had this since taking medication)

I do not have that heavy feeling you describe, nor wobbliness and I haven’t fallen - yet...

#9

2

dd


#10

Hi out there, this is my third attempt at posting as I have accidently deleted the last two. I cant believe it been three months since I last posted!!  I am not really sure if my parkinsons symptoms are improving are not.

I didnt mention in my first conversation that on the October before I was diagnosed I hahd my C 4-5,5-6, 6-7 vertebrae   discs removed  anf three cages put in place My consultant saw me on the Monday and I was under the knife on Thursday! He explained that the operation was to stop anymore damage rather than fix any damage. At that point parkinsons was not diagnosed. Some of the symptonss I had were not spinal and some could have been spinal or pakinsons. 

 

I now can get in and out of a car a little more easily. My bladder incontinence  has become so bad that I am on a waiting list for botox. Although I am on 250 madapar x5 times a days plus azelec x 1 and 16mg of nuepro patches my walking has really slowed down. I can only describe like a cheap battery on xmas day. i just run out of energy.

My blood pressure is down to my boots and as result I have a few bouts of fallings. last Sunday I knocked myself out as a result of a fall. my blood pressure tablets have since been doubled. i am wearing A blood pressure monitor for  next 24 hours and after this I will have to self monitor at home.  I get very down some days as i feel nothing is getting better.  However I have some fairly good days. I just wonder where i am on the parkinsins scale, am i at beginning , middle or end. Or i am on wrong dosage.   very lonely out here


#11

Hi Gourse,

I'm new to all this. I joined in the hope of finding some encouragement and empathetic views which might help me come to terms with PD. I was normally a very posative person. PD has shattered my confidence and I want to repair it.

Your post rang some bells. I.E. The drugs being difficult to cope with. Pride being eroded. Confidence levels reduced.

This is my view on those issues. I have talked to the specialist nurse about side effects twice on the phone. She is extremely helpful. Have you got recourse to a specialist nurse? If not, ask for information and try to get one.....they are solid gold.

The pride I lost was in working hard, which I now can't do. DWP have treated me with very little respect, which made matters worse. I was feeling very low after their so called assesment. I am not, and never have been, a lazy person. To be genuinely unable to work and have someone make you feel you should be working (which for 40 years I did well) is both demeaning and well out of order. I contacted Age concern about this issue. They too are solid gold. They will help me when my case is reviewed and it restored my faith in the human race somewhat. If you need their help do not hesitate to contact them. They are on the net. They are kind, considerate and very empathetic to genuine causes. It helps to know we are not alone and some people out there care about us.

I fully appreciate your comments on confidence. I played football twice a week for different teams and trained twice a week. I was as fit as a butchers dog. I ran up hills and laughed at tiredness. Now I walk in short bursts, punctuated by sitting down and resting. I fall asleep at the drop of a hat and feel tired almost continually. I take heart from the fact I can still walk albeit in the manner described. I once worked with young adults with cerebral palsey for a short while when I was made redundant. It taught me a valuable lesson in life. Some would give their right arm to be able to walk like I can even with PD. I am not belittling our condition, I am merely pointing out things could be worse.

As for feeling lonely out there, all I can say is continue with this forum and talk to other professionals whom I have discovered are very special and very caring people.

We are not alone, we just need a little help getting in touch with the right people. If you read 'desiderata' by Max Ehrmann it says 'avoid loud and aggresive persons they are a vexation to the spirit'. I think he may have been refering to the DWP in this instance.....or am I just annoyed with them.......whatever.......it is a good guide to life, take a look. I am not a highly religious person, but this document puts life in perspective. It's on the net and is not attributed to any religious sect. 

 

     


#12

Orpheus

 

No you are not alone in your frustrations with DWP , i am also having issues with them , but the more difficult they are making things the more determined i become, i started part 1 of the PIP process nearly 2 months ago   for some unknown reason they are incapable of moving it to part 2 ,the parkinson's helpline and the people within Parkinson's uk have been  very helpful  in helping me sort this out .

Are DWP  deliberately making things as difficult as they can, there certainly not making it easy .


#13

Hi Shelly,

I contacted my MP Tim Farron about the ATOS assessment for incapacity benefit and the fiasco surrounding it. He is on our side and fully condemns the mess they have made. What started out as a way to stop ineligible people claiming incapacity benefit, became a mandate to send every sick and suffering person back to work regardless of their condition.

David Cameron is a typical tory (look after the rich), Labour are worse than useless (lets borrow more) and Liberals do not have enough clout.

While the benefit system needs overhauling I am sure a fair minded government could work a system which cares for the sick and elderly. They have systematically wasted our contributions and now we all suffer.

I did not join this site to rant, but this makes my blood boil. I helped David Cameron build his beloved infrastructure in weather and conditions you wouldn't turn a dog out in. I paid tax and national insurance. Now in my hour of need I am treated dispicably along with many other genuine incapacitated people.

Towards the end of my working life I stepped down a notch or two to stay in work. I took a massive cut in wages and did some care work. I was proud to see where my taxes were going and thought I was giving a bit back. I now see people on TV with placards in wheelchairs asking for their rights and dignity. I feel ashamed. How can they do this to these people.

We need a high speed rail link (HS2) like we need a hole in the head. It is an exercise in political vanity which will cost billions. It will of course benefit the rich and powerful, but not most of the ordinary population. And how come at the drop of a hat we always have money for war mongering.

Dear old Mr Cameron was straining at the leash to bomb Syria. While I feel sorry for the poor people of Syria (and I really mean that) there are so many countries being abused by tyranical dictators, it is impossible to solve all their problems. If you look at Egypt it has gone from bad to worse. Still he wants to stick his nose in the trough though.

Solve our domestic problems first, stop having wars and building monuments to stupidity.

If I had one wish it would be for a sensible government. They get dafter at every change.

If I had two wishes it would be a cure for all ills, then we could all work happily. I doubt I will ever live to see either.

If I had 3 wishes the third would be a spell check on here. I am a poor speller.

I apologise for all this and knowing how upset you will be feeling, I sincerely hope you get justice. Contact Age Concern as well as Parkinsons UK if you need further back up. I found them very helpful. My Parkinsons nurse has also offered me her help.

There are so many good people out there, it is not all bad news. Take heart and keep fighting. I didn't pay a small fortune in tax and nat ins to see sick and deserving people treated like little more than a number.