Bewildered

About Parkinson's and health Newly diagnosed
21

Thank you kindly for your comments & I find what you have said much easier in logging into my account. I see what you mean it tells you what new messages you have.

Also thank you, its nice to know you can log on at anytime & have others to talk with who know how your feeling. I haven't met my local support nurse yet. In fact I haven't heard from anyone since learning of my PD on xmas eve. I feel if honest fairly alone with it all! People close I have told about it have more or less shrugged it off as so what it shouldn't change anything. & you just get on with it. I am waiting for some sort of scan to be done, I haven't been told a name just its a head scan. I have just started on taking 3tablets aday, & my goodness today do I feel light headed & so tired. I feel fairly unsteady if honest.

The tablets haven't been too bad i'm really trying to get use to them. I did have to call the PD helpline to speak with a nurse on Wednesday last week as after taking my 2nd tablet I could hardly stand, & my head just felt so weird. I really felt unwell. The nurse told me she thought it sounded as though my bp had dropped. She said this can sometimes occur. I am prone to low bp so I think she was right. What made it drop that day though bewildered me! But i'm hoping it don't happen again, as it took me off my feet. I spent the whole afternoon lying on the sofa!

Thank you again J of Grey cottage. Actually your name has brought back happy memories for me I use to have a lovely friend who lived in a cottage called grey cottage. You take care, you too Klou! I can't find your last post to mail you. Best wishes to you both, & enjoy your Sunday, its sunny here. x

22

Hello again, autumnleaves --

I looked back to your first post to see what medication you are taking.  Unfortunately, we're in different countries, and the meds do not have the same names everywhere.  I do not recall whether Madopar is the British equivalent of Mirapex (pramipexole) or of something else.  Besides, I'm not a doctor and shouldn't try to give medical advice.

That said, however, when I once started on a medication that made me lightheaded, my doctor immediately reduced my dosage.  That was Azilect (rasagiline) to delay the progress of PD.  Sometimes, too, a doctor will change a patient to another drug when one causes side effects.  You should not have to lie down for an entire afternoon because of your meds.  That makes the treatment worse than the disease, in my opinion.  In most cases it does take some experimentation to find the right med or combination of meds.

I was pleased to hear of your association with the name "Grey Cottage."  My house is more modern than the name might imply, but it is built in cottage style, painted grey with white trim.  It is one of the smallest homes in the neighbourhood, but that is a rather good thing now that I am widowed and living alone.

Continued good wishes to one who received a terrible Christmas present!

J

 

23

Hello again J of Grey Cottage, 

Thank you so much for your message to me I am most grateful & found your advice helpful. I have felt a little better the last 2 days, but today have spent the afternoon ironing, once I stopped my balance was awful & I took a real stumble on the stairs just now! Ouch! No doubt tomorrow I will have a bruise. I just have the bed to make up that I changed today then I will relax tonight. I don't know about yourself my friend but I have found that I can only do so much in a day now. I get very tired. I use to clean the whole house in a morning then, garden or paint in the afternoons, but those days are long gone. I have been finding that I have been slowing up now for the past few years, but Drs & hospitals have all been checking me & testing for something else. 3 years ago I lost over a stone in weight in just 4wks, & as I have stomach health issues in my history I think they panicked & automatically thought it was something going wrong there, but I now believe it was the start of this PD. As every few months new symptons have started to happen & i've found I am doing less.  At least I now know what is wrong, but I must say its a dreadful shock to me, I still get very down, lost, when I think about it all. & worry about the future.

Your home sounds delightful, I use to live in a largish home in Norfolk, then downsized 14years ago, then 5years ago downsized even more. I now live in a modern house too, & if honest I am now thinking about downsizing even more into something with a small courtyard if a garden at all.  Lets see & hope that 2015 brings us some happy times.

Very best wishes to you J. & take care. Autumnleaves

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Hi Autumnleaves

I've been reading the posts between you and FedEx and J of Grey Cottage and completely sympathise with your situation.  I was dx in October 2000 and have had to regularly see the neuro-consultant and neuro-psychiatrist and now neuro-urologist (that means every six months). 

I shouldn't really moan as when I was getting the symptoms really badly, they couldn't have been more helpful.  

I'm still working as a secretary for a mental health team but I gave my notice in and I finish on 22nd March.  I'm happy about this because although I need t get up and shower and dress ready for the day, I can really do without going to work, have to learn new things and interview for my own job because there will  be great changes in the Service.  Hoping this doesn't happen until I've gone.

I've been working for the Trust for 26 years so I think I deserve a rest but you're much younger so do keep going as much as you can. It's a feeling of satisfaction when you set yourself a goal and you achieve it.

Good luck for the future.

Best wishes

Casie

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Hi FEd and Autumnleaves

thanks for your kind words of support. As you know I don't have this dreadful disease but I will not let it beat my other half! He hasn't been diagnosed yet but I feel sure that he has Parkinsons. His depression is the worst thing because he has always been a very positive person but I encourage him to play golf and exercise which gives him a more positive outlook and also reduces the tremor that he has In his right arm. I have explained that the forum is a great place to access support and he has begun to ask me to look up tips on diet exercise etc so you never know he might be posting himself before long! 

Take care everyone klou

26

Hello Billywhizz,

Just thought i'd drop you a line this morning to see how your wife is getting on with her medication.I was only dx almost 4weeks ago, has your wife been dx long? I am still taking the Madapar 3times aday 50mg. I felt awful last week, but think it wasn't helped by a fluy bug then stomach one to follow.

I am finding since taking these tablets tought I am constanly so tired, I could quite happily sleep most of the day. & my swallowing seems bad too. It sounds quite strange to say this but I seem to have more stiffness, feel more lightheaded, tired & weak in hand & arm on right side then I did before being even dx!?? Yesterday was hopeless I dropped a vase & a cup & felt like screaming!! I have now got my 1st appointment through to see the Parkinson's nurse for 12th Feb, so i'm just hoping I feel better by then.

I do hope your wife's symptons have settle down, as you say I guess its trial & error with the meds. I feel happy that this medication hasn't upset my stomach or had bad effects in that direction like some can, but must say i'm finding the get up n go & lightheadedness when out walking still difficult. Will plod on I guess like we all do.

I still struggle with the forum here, I wanted to just come on one day last week when I felt quite down & unwell just to say hello to everyone but you can't seem to do that, you seem to have to click onto a thread or precise subject. I was hoping it would be a bit more like the fb set up where you could just log on & say hi. I find it difficult to often find the few people that i've met on here to speak with them again. No doubt its me & my head not in right place understanding it all yet. Lol.

Give your wife my regards, & I do hope she is coping well. Take care both of you Autumnleaves.

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         Hello Autumleaves   

                                   Thanks for your post, my wife is doing ok although her meds have not changed yet.She saw the neuro and he   suggested to reduce her antideppressant tablet because this could be causing her low blood pressure and then later up her sinemt from 3 to 4 25/100mg. We are waiting for our GP to get in touch about this. My wifes symptoms are mainly tiredness/fatigue- tense jaw-shoulders ache/stiffness-involuntary tongue movement-balance-difficulty getting up from chair and turning over in bed. She did have problems swallowing and a bad shake in her right hand but the shake isnt that bad now and the swallowing problem is fine after taking sinemet.My wife has fallen a few times too but with most things is it the parkinsons or the side effects of the meds thst cause some of the problems....I wish we knew.

                         Thanks.....Billywhizz and Sanfairyann

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          Autumleaves

                             Forgot to mention start your PIP clain when you can as it takes more than 26 weeks to get from them receiving your completed form,also get in touch with parkinsons uk and they will send someone out to help withe the forms (they are really good )

                              Billywhizz

29

Hi, autumnleaves --

I'm sorry to hear that you're still struggling with probable side effects from medications. I hope that appointment with the PD nurse helps and that next month is smoother.  Once you get established with a nurse, you should be able to handle med changes by phone, right?  You can't wait weeks for an appointment every time you require a consultation!

The slowness and tired feeling are typical of PD.  I know I move and perform routine tasks much more slowly than I used to.  But the more I exercise, the more energy I have and the more quickly I move.  Around the holidays I slacked off on exercise and have paid the price in terms of what I accomplish each day.  Now I'm working on getting back in better condition.

Good luck!      J

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Hello Everyone I have just joined the forum today. My gentleman friend has just been diagnosed with Parkinsons he is very down at the moment. He wanted us to end our relationship. We live separately about an hours drive apart. He does'nt want to be a burden. I love him so want to help him as much as I can.  I will tell him about the site eventually when the time is right he may want to join at some point I'm sure it would be a great help to him. I know research, treatment, support etc has come on leaps & bounds in the last 31 years since my Dad had Parkinsons he died with pneumonia. All the best to you all. Cottage

31

Hi, Cottage!   From my cottage to yours . . .

If your friend has just been diagnosed, he is still slightly in shock probably.  Although I've had PD about 18 years, I can remember my diagnosis clearly.  It is really a jolt to be told you have a "progressive disease."  I imagined the worst and mourned awhile for my good health, lost forever. 

Well, in my case, PD has not even approached the images of my fears.  I am still living the same life I always did, only I'm taking two handfuls of pills per day and have some mild symptoms, such as awkwardness in using knives and an off-and-on loss of my senses of taste and smell.  Every case of this ailment is different, we're told.  But some principles apply generally:  exercise is good for us (vital, really); caffeine is beneficial; positive thinking helps (but don't expect this too soon from one recently diagnosed). 

Your friend is lucky to have such an understanding parrtner.  You can make him realise that he has not changed into a different person; he just has a new challenge in his life.

Best wishes to both of you!

J

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Hello to both of you in lovely "Cottages"!  Cottage & J of Grey Cottage

I am sorry to hear of your friends recent diagnosis too, I was diagnosed Xmas Eve as dear J of Grey Cottage knows. The advice given is right, its early days yet for your friend & your friend is so lucky to have such a caring loving companion as yourself to support him. I find most people I have spoken to about my diagnosis apart from the nice people on this site that I have communicated with, have rather just looked at me as much as to say, "Yes &"! & that's been it really! The first words i've heard from almost everyone that i'v confided in has been, well its not life threatening & treatment has come on heaps & bounds. All of this is quite true, but it is still a shock to be told that you have the illness, & as J of Grey Cottage has said it is a progressive disease & it is scary to hear. Its a fear in my case of the unknown & if its still possible for you to achieve your future dreams & plans. So I do understand how your partner is feeling. Its almost 4 weeks for me now & I still feel lost & like I don't know what to think about my future. I know of a couple of people I can call that understands this illness well, one being the Parkinson's number on this site. The other a very kind, nice, helpful lady whom got in touch with me via this site. So try to encourage your partner to join as he will never feel alone with it. This site has helped me greatly, & I know I can leave a post & someone out there with this disease or someone who knows a lot about it will reply. A reply alone is nice as you suddenly feel someone is there with you & for you.

I at the moment like J Grey Cottage haven't too many bad symptom's at the moment. & Although I have not long been diagnosed I personally think my Parkinson's started some 3 years ago, when I lost a stone in 4 weeks with no explanation. Since then i've noticed lots of small things happening. My main problem at the moment is feeling a bit disorientated when walking & weakness in my right arm & hand. I can't grasp things in that hand, my strength has gone. Also the past 6 months or so I have started to find I become breathless very quickly, & just can't do what I use to do. Its so frustrating for me as I use to buzz around the house & garden. Now I just can't do it, I get very tired. 

Before this diagnosis was made xmas eve, my plans were to move back to Norfolk & live by the sea again. In fact a nice Cottage came onto the market just 2 months before xmas, & my plan was to go & view it  this month. ( I guess that's why i'me finding it nice talking with you both, as i'me assuming you live in a Cottage! Just the word Cottage helps me think of my dream still, Lol!! Daft I know! Now it all  seems to have gone out of the window for me, as I tell myself how can I now move & live miles from family etc & start to drive again & enjoy the life I had planned for myself!! I also yesterday heard of a beautiful flat on the sea front that has become available too, in the same lovely area of Norfolk where I wanted to be. But again i'me down as i'm thinking how can I now be thinking of any of this having been given the news I have this disease.

I guess I am mentioning all of this to let you know Cottage, that I expect your partner is feeling the same as I am & many others too after being told of this life changing news. He is worried no doubt about what the future holds for him & any plans he had or has he may be feeling like myself at the moment just muddled about everything.

Its very reassuring though to hear other stories on here, such as J of Grey Cottage who has said that life has changed very little over the years. So the same could be for your partner! Its certainly has given me encouragement.

I am on Madapar medication 3 tablets a day of 50gr. & my concern right now is that when out i'm still feeling a little spaced out, & feel just unsteady I guess is the word. My head feels in the clouds, I also am finding that I wake up so late, & didn't use too. I have bad hot flushes too.  I am cross as these symptoms hot flushes, feeling nausea, pain in my back, & aching everywhere, all the pd sort of symptoms I have had for a long time, & I feel because I also suffer with panic attacks, that is what (not all, but some of the medical profession) have just past me off as being overly anxious.  I feel I could have been on medication a while ago if honest & it might have made a difference to me today! But who knows!!

Well  i'm sorry for waffeling on, & boring you, but do give your partner time to come  around to understanding this disease, "say's she who still doesn't" & try to encourage him to join this site, there are some helpful people & such nice one's too. I just wish the forum was easy to understand. I often just want to come on & say hello to someone!! & just have a quick chat to pass away a bad hour or so, but I just don't get how you do it. You seem to have to have a specific subject or topic to say something. I tried the other day just to come on & say hello, but I couldn't because I didn't have a specific topic or comment to ask about. I wish it was like a fb site where you could just log on say hi & just see who is around to speak with. Still, its a brilliant supportive site so hope to hear from you or your partner soon.

Best wishes to you & J of Grey Cottage. & I hope your day is a good one. Thinking of you both.

Autumnleaves. PS sorry for long message & spelling, its one of those days!!! Lol.xx 

 

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Hello again, autumnleaves!

If you want general chat with anyone and everyone, I think the "Living with Parkinson's" section is the best choice.  If you'd like personal exchanges with someone active in the forum, click on "Search."  Then near the top of the page you'll be offered "Member Search" and can see if the person you want to communicate with accepts private messages.  I've started a couple of email friendships that way!  One woman in Florida and I (in Oregon) email nearly every day; she is a caregiver for her seriously ill husband and appreciates a distant and undemanding friend.

By the way, you sound as if you're managing quite well for one who has been dx so recently.  I didn't even confide in anyone outside the family for several months!

Wishing you a great day!

J

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Hello again J of Grey Cottage,

Thank you kindly for explaining the forum to me, I appreciate your help very much as I do find it can be confusing.

Thank you also for your comment regarding how well I am coping. I wouldn't say I am myself if honest, & I am really a very private person regarding talking to people. But one thing I have learnt from other issues regarding my health is that you need to seek advice & any help from others who know about the situation your in or matters regarding it as this is always helpful.. I wouldn't just talk about my dx to anyone. I find it quite difficult if honest to even think about it myself, & guess that's a reason i'm trying to get other people's opinions on it.  I have only been out 3 times since being dx. & I haven't seen my medication mentioned by anyone's post that I have read. & I am trying to find out how others are finding it, & if its a fairly normal medication to start on.  

 I feel more comfortable just having one or two people who understand & talk more one to one. But on the forum I haven't found a way of doing that other then entering a post which is about a certain subject & which a lot of others are involved with. I think perhaps by mentioning  the fb method of communication perhaps I have confused things & come across as someone who enjoys a lot of group conversations, which is far from how I am.  I have been trying to find a way of using the forum to contact just a couple of people on here whom have been helpful to me.  I haven't understood how to do that. Your advice has made it a bit clearer for me. I am hoping that once I meet my area nurse I won't need to bother anyone on the site.

Thank you for your help & advice. Take care, & I hope you are keeping warm & well in this cold weather.  

35

Hi, autumnleaves --

You keep saying farewell and are probably wishing I'd go away.  But in every post you mention something I want to respond to.  So here I am . . .

Madopar is, I know, often used as a first treatment.  That doesn't mean it's the right first treatment for you.  If your side effects are strong, your doctor or nurse may choose to change your medication.  I take an equivalent of Madopar now, but my initial med was Mirapex (pramipexole, a dopamine agonist).

If you want to read what people have said about taking your drug, just put "Madopar" in the search box to the right of the helpline number at the upper right of the first screen or page.  I tried it and got so many responses you'd think I had put "sex" in as a Google search.  There have been lots of posts on the subject -- Madopar, that is, not sex.

I understand your being a private person.  In general, I am one also.  To this day I have refused to join a support group.  I don't want group discussions on how I'm feeling or anything of a personal nature.  But on the forum, we can remain anonymous and yet communicate, too, and learn from others.  We know each other and yet we don't.  Some forum members choose to meet.  For me, across the Atlantic and then across a continent, there is not much opportunity for that even if I wanted to.

In regard to getting just two or three people in a semi-private forum conversation, have you asked Ezinda yet?  She can be reached through the "How to Use the Forum" section.

When you see your area nurse, be sure to mention all the symptoms and sensations you are experiencing.  (It helps to make a list ahead of time.)  The fact that you have only been out three times since diagnosis may indicate a need for a change in your treatment.

I'm thinking of you and wishing you peace and strength.  And now I'll go away for a while.  :)

J

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Hello J Thank you  for replying to my message & for your positive comments. Cottage

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Hello Autumn Leaves Thank you for replying to my message & for all your helpful comments. I am feeling abit lost at the moment as I have'nt seen my friend since he was diagnosed last week because he has been unwell & we have had heavy snow falls I don't drive so I have to wait for him to come to see me. All that may have to change eventually as he might not be able to drive in the future. I can't wait to see him & to have a proper talk about things. Thank you again Cottage