Hi my name is Margaret I was diagnosed in march after a long array of blood tests scans mri you name it I had it I first noticed something wrong with my hand when I was writing invitations for my husband and I' pearl wedding anniversary. my writing got smaller as I wrote them out this was march 2012 our anniversary was april 23 we had the party and we all had a lovely time I never thought about the difficulties of the in vites things were good until the 16th may 8.55 am my husband passed away he was 48 he had cardiomyopathy as does my eldest son my son was diagnosed when he was 24 at the time John + I had barely heard of this disease but we all got tested and turned out John sen had it too my other 2 kids were fine they did not have it what has this to do with parkinsons well the morning John passed my son and myself had to perform cpr on him but by the time we got to hospital he was gone and by the time I realised my right hand and arm were getting stiffer and went to Drs at first it was stress I was having a hard time coming to terms with losing John but then my right leg started to stiffen up I was reffered to the stroke clinic butnope that came back clear then started the merry go round of Drs xrays scans the lot I finally got an appt for a spec scan but meanwhile I had convinced myself that it was my guilt at not being able to help John but then I finally got diagnosed Im not sure how I felt then or even now. My mobility is shaky at best I noow wallk with a stick on a good day and have a zimmer for the bad days I went back to work for a while but couldnt cope with it and went back on sick leave jan of this year and now Im retiring next week due to ill health sorry Iwasnt sure what I was gonna write I went aa long road for a shortcut if you are still reading this thanks for sticking with it xx
Welcome to the forum
I am so sorry to hear your story , i was diagnosed in August this year although i had probably had it for about 3 years now i first noticed my tremor about 2010 after numerous visits to the dr it was put down to my anaemia, then i noticed i was stiff getting out of a chair and out of bed in a morning another trip to the dr to be told it was due to my thyroid problem then i noticed a very painful left shoulder and neck and the feeling like i was shaking on the inside , went to see a different dr who did the usual tests then referred me to a neurologist who diagnosed PD , my mother who is 76 also has pd, i was only diagnosed in August but i am having some mobility issues to which has resulted in the physio saying i need special shoes and splints on my legs which shocked me as i thought my main problem was my shoulder, i guess my pd is taking the same route as my mothers she lost the use of her leg but i am trying to stay positive and hope that a intense course of physio exercises and splints etc will help me retain my mobility .
Hi Shelly I did write a reply earlier but don't no what I did I lost the whole thing lol my computer skills are rubbish. I wanted to tell you that I attend physio and it has helped me enormously. I got splints and not really special shoes but they definately shoes not trainers or boots like I would normaly wear I got them in clarks weren't too expensive but man are they comfy even wi the splint it did help me but I also have reiki on a rregular basis. The Dr put me on another tablet called sinemet and that seems to be helping along with the exercises. As little as 5/6 weeks ago I could hardly stand now I am walking about the house unaided even went to my dr yesterday on my own which believe me is quite a big thing for me lol xx
Thank you for replying Margaret
The hospital are providing the shoes i do not have to get them they offered me trainers but i rarely wear trainers , they have not given me any idea what the splints are going to be like ,do you mind me asking what kind they gave you do they come all the way up your legs to the knee or are they more discreet i am not being vain i just don't know what to expect i suppose it is fear of the unknown ?
I am only taking Rasagiline at the moment but due a appointment with the neurologist this month so fully expect him to add something like Sinemet well i am hoping he does x
Hi Shelly I actually got two of them a plastic one for daytime when I was more out and about. It comes to just the ball of my calf and nobody can tell under trousers quite discreet. The other one is made of material with plastic inside that one is for wearing in bed. Its padded so it shouldn't cause any discomfort. Its not vainity as you say its the fear of the unknown. They're a bit tricky at first getting the straps in a position that suits you but you will get that in a few days. I can definately recommend the sinemet I hope if your dr gives you it you get same result as me xxx
Thank you for the info , i think i know what you mean are they like rigid plastic that goes round back of your leg and have a flat part for your foot ? ,i didn't realise they had to be worn in bed to , but i will do whatever it takes to try get some of my strength back and hopefully not losing the use of my leg like my mother has but she had already lost the use of her leg by the time she was diagnosed with pd so hope for me yet
Did you have to wear them on one or both legs ?
Glad your feeling better on Sinemet , i don't care what i get given as long has they work lol x
Stress of any description is really bad. Emotions which are very strong ( normally family related) are crippling.
Strategies to cope with this are vital.
Above all, be kind to yourself. It helps.
thank you for the advice mrs t , i do try to avoid stress but not been easy lately
I know. Sometimes it is good.
Also we can all preach. The main advantage of this site is that we start out with a buit-in advantage: mutual understanding.
If one more medical professional tells me to:
I shall punch someone.
I only wear it on my right leg cos thats the leg that disny work properly it seems to be my right side that all my weakness is have had to learn to do things wi my left very strange lol xx. Its no just medical people tell me that friends and family do it too. sommetimes . I feel like screaming I can speak for myself and iif left alone I can do some housework and fix myself something to eat. I had a uti recently and it knocked me for six. everyone keeps asking are u ok do u want this seat etc. Don't get me wrong there is still things I need help wi but I can tell them enough moaning. Last week Iwent to a halloween party dressed up and everything even got up to dance a couple of times I just keep telling myself ." Every day in every way I'm getting better and better" in the words of Frank Spencer haha got to keep laughing thats good for just about everything xxx
Absolutely agree with you Margaret , i am lucky in a way its my left that is weak i am right handed so to do things with my left would be very alien to me
yes same here i know people mean well when they offer to do things but i try to say in a nice way let me do it if i need help i will ask
well done on getting so far Margaret and i agree you have to keep laughing x
Hello, shaky mama & shelly & mrs. t ---
If I may join your discussion a bit late, I'd like first to offer condolences to shaky mama on the loss of her husband. I'm so sorry you had to suffer a double disaster. I lost my husband of 40 years in May of 2012 but had had PD for 15 years at that point, so my diagnosis and his death were at least separated in time.
It's good to hear that you are benefiting from Sinemet. It works for most of us with PD, I think, though I started taking it very late. My doctor prescribed Mirapex (pramipexole) first, and it eliminated virtually all my symptoms. But after some years, the symptoms emerged again and called for new medications. Now I'm taking a fistful of pills every day, even though I used to be the sort of person who avoided all medication if possible. But I'm lucky in having good results and no side effects at all. The meds plus lots of exercise are keeping me fairly steady for the moment.
I couldn't agree more with all of your comments on people offering unwanted help. I guess they don't realise how insulting it is, really. But I try to be patient and follow Shelly's polite method.
Sorry to be so wordy. I notice mrs. t can say in three lines what it takes me three paragraphs to express!
Best wishes to all!
Hi thanks for the condolences much appreciated. Its my wee granddaughters 6th birthday today and we were all over yesterday cos shes too busy to see grannies on her actual birthday lol. I got new stick last week and she was a bit dissapointed cos this new one has a shaped handle the last one was perfect for her to do her Mick Jagger impression but not to worry. Her wee 15 month old wee brother is using it as a cross between a light saber or horse haha they are great therapy my mind cant dwell for long wi them around. Ye try to not be too helpless when they aroud by the time they leave Im shattered. But kids leave you smiling for days after dont they. Amy is great fetching and carrying light things for me. She loves being asked to help. Last week she rolled out some pastry for me for dinner and when she told everyone she told them she had to help cos of grans arm isny working the innocence of kids you gotta love it. This is leading me to say if only the adults could do the same wait til they asked. I know big long story for a shortcut thats me haha xx
so sorry about your husband Margaret i first read the post on one of those nights or should i say early morning when i was unable to sleep
i do not have the joys of grandchildren yet maybe in the future but my sons who are 24 and 25 do not seem in any rush to find girlfriends let alone anything else , to comfortable at home x
I no the feeling my eldest and youngest still here with me though to be honest I'm dreading them moving out my daughter is going out with a lovely boy. and they talking of getting their own place soon though he has to finish uni and get a job so may be a while lol while my eldest is saving for a deposit for his own place so I think at some point soon they will both fly the coop xx
Mine do not seem to bothered to leave home just yet life far to easy at home , but to be honest i don't mind i enjoy the company x
Same here I would be lost without them. I know at some point they will move on.Hopefully not too soon haha. They give me a reason to moan lol.Only kidding they really great kids I don,t know what I would have done without them this past 18 months. They been such a source of sanity and comfort to me. Then the PD too they give me hope everyday I can,t feel sorry for myself with them around.We try to see the funny side where we can and this week bonus time at the weekend grandkids coming overnight so be plenty to make us laugh then lol xx