Interested to know how long from noticing your first tremor were you diagnosed? Was it hand or foot? My mum has had Parkinsons for 15 years so I am obviously super sensitive whenever I develop anything that I think could be a symptom. Are there any new developments in terms of treatments? Is it best to be diagnosed or not in this current environment? Especially if you are still relatively young and in employment? How about health insurance too? Thanks
Hello HavanaS in my case it was easier before I was diagnosed with PD. The reason being I though my symptoms were from sports, occupation, and turning middle age. I did have a aunt and uncle with PD ( they were brother and sister) but the family kept it swepted under the rug. I never thought about the possibility of PD.
Best advise I can give Live for today. Why if you want insurance bring it to the attention of an insurance company. If there are no exclusions covering PD the rates you pay will be cheaper. I think it would be likely that people with PD. pay a higher rate.
Next is just because your mum (USA mom) has PD does not mean you will get it. I believe the currant treatment if you are younger and symptoms are mild is to hold off on dopamine replacement. PD can progress very slow. Some I see exercising, show very little symptoms and don’t take a replacement seem to be fine. Some I have talked to wish they would of held off the meds.( Dyskinsia).
Some employers even though they won’t admit to it. Avoid hiring those with physical problem. There again why put a stigma over your head if you are functioning well.
I am certain some will reply beside me.
I am no doctor. So my advise probably falls short. But I have PD and live one day at a time. Before I had PD I lived one day at a time. Yes I prepared for the future,economically,lived healthy, did the best for my family. The truth is there is little good about worrying about the what if. ENJOY LIFE.
Thank you for your response. Really good advice. I actually noticed a twitch in the instep of my foot last night whilst I was watching television. Like you, I have put down some symptoms to middle age and tried not to focus on it too much. Quite hard to do when you have very young children and end up thinking into the future. Anyway, I will take your advice and live for today/ book the holiday/ buy the dress etc/ and try to get more exercise. Thank you
Hello HavanaS - not everyone with PD has a tremor & even if you do develop PD, your symptoms might not be exactly the same as your mum’s. The time to look for a diagnosis PD or not is, in my view, when/if you develop troubling symptoms. My husband had various symptoms that didn’t really interfere with life for 3 years before he saw our GP about them and it was another 12 months before he was diagnosed. He doesn’t have a tremor.
Yes- thank you. That is good advice. I feel like I am super sensititive to the symptoms and almost know too much about what might be coming. However, until there is some kind of advance in science for Parkinsons that halts the progression, then I guess all you can do is try and live healthily and get exercise and try not to dwell on it. Thank you both for your advice.
hi I first noticed my leg and hand had a little shake when after bowling having a glass of wine, this was in Aug it was the following March that I was diagnosed, that was in 2010 at the moment meds are working well. What I don’t understand is they say that PD doe’s not run in family’s but my bother has just been told that he has PD . Also my husband after a long, long consultation with GPs and Hospital Doc’s he was diagnosed with REM, this is also one symptom of PD but he has been to see specialist at QMC and he said that he has not got PD. But not in exactly these word’s. My husband has a lot of symptoms that I have, Holiday Insurance must admit now mature people we go with SAGA as their holidays include insurance but you still have to answer medical questions.
Mountianair,Mary1947 and HavanaS I am glad it was mentioned about PD with no tremor or very little and REM SLEEP DISORDER. I am in that category. IN fact my tremor feels more inside me.
Another obstacle about PD is (IMO) how you were brought up. My Dads family were taught not to tell about your illness. Sweep things under the carpet. Don’t bring attention to your weaknesses. My dad died of cancer at 64. After I found out I had PD. Caused me to ? other relatives about things pertaining to health. I found out My dads brother and sister that lived out of town had PD. We very seldom saw them.
Another obstacle one faces is and again (IMO) many family practice doctors know little about PD. Examples you are told it is just older age, arthritis, former injuries, it is from your spine, you are just under allot of stress and are depressed,nervious and it is essential tremor. Here take these pills. I feel many people have PD for years and pass from something else. Never got to the correct doctor. Never got a diagnosis.
To finish for where PD progresses faster. We can not adapt to the physical,emotional, and cognitive change fast enough to live life in comfort. It doesn’t take a doctor to see something is wrong. We end up finally seeing the correct Physician.
One must realize that when they go to the doctor prepare and consolidate all your symptoms. That way the doctor (if he is a Good one) will chose the right direction for your health care. Sorry for the long post. This is a good topic. Tom good day to all.
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My first symptom was loss of sense of smell about 15 years ago. Tremor was first experienced in April 2016 whist driving. Diagnosed by July confirmed by dat scan in October 2016.
I still work as a postman and feel better for it. It’s probably better to know if you have symptoms and try not to worry about it if you don’t.
Thank you. But how do you know if you have lost your sense of smell? How is it actually classified? I know my sense of smell is not great but I know it hasn’t gone completely. I can still smell perfume in the bottle etc (up close)
There are formal smell tests though not often used at the moment. In retrospect, my husband’s first symptom was loss of sense of smell 5+ years before he was diagnosed but it was pretty profound, he has no sense of smell at all and no ENT problems so not due to that. It can be dangerous as we discovered as he can’t smell anything burning or leaking gas etc. Not sure how he/we realised but it was pretty sudden at the time. Maybe coming on longer but he hadn’t noticed?
HavanaS in my case lose of smell was gradual. I never noticed it. My wife would make a comment about how something smelled. I never or hardly recognized the smell. There are many things that effect your sense of smell.(allergies, getting colds, working with bleach that damage cells)
My first post I left out most my case of PD for a reason. (I at times am included in my next statement) If a person hears a symptom and thinks about it long enough. It is easy somehow your mind plays tricks.(things that are seldom seem more often then they are.
This is not intended to get you angry. My personality is not antagonistic.
A doctor when they see you will want clarity of symptoms. My advise is to keep daily notes before you make an appointment. (hours slept, muscle cramps,sense of smell, tremor,how you walk and speed,and so on)Hope this helps.
There was no mistaking my symptoms. A gradual tremor in my right hand becoming more and more active together with an attendant loss of dexterity, depression and anxiety attacks - I had it all. I self-diagnosed months before the official verdict as my symptoms were so obvious. When I finally got to see a Neurologist it was drawing a couple of spirals and a walk down the corridor and I was officially diagnosed - tremor dominant PD. I don’t recall loss of smell at that time but it has become more obvious now. The strange thing is, there are times when my sense of smell returns (especially during muck spreading season!) however fleeting, but then again it might be my imagination.
ChasC hello the disease is progressive. I never saw anyone that had PD in person. But others around me new something was not right. I fought it. My Dad was a WWII army vet raised us to not show weakness. The Brits and Americans back then were a tough lot. Had to be. But PD pays no mind who we are or where we call home. Good to read your post.
Hi All. My smell and taste left me many years ago-but then suddenly started to return! Wonderful! buy before long it went/then returned,and has been doing this for the past few years. I read that the T cells in your nose are the strongest in your body! Maybe a transplant into our brain may help us? lol
My Partner doesn;t have PD,but has absolutely no sense of smell at all - so What;s the answer??
Thank you so much for your response. It’s interesting to hear that some of you have experienced your sense of smell coming and going. I came in the house yesterday and could smell baking cookies but I often wonder if my sense of smell is getting worse. It is so difficult to tell as you can’t get a sense of what everyone else is smelling.
HavanaS I have a suggestion that might act as a test comparison for sense of smell. Have some of your friends put different things that have a mild smell in a paper bag. You can not see what is inside.(banana, lemon, cinnamon, a rose and so on). The other person can readily tell what is inside with their eyes closed by smelling the opening of the bag. Then you do the same. That way you can compare your ability to theirs. Use only people you know don’t have PD. This way when you see the doctor you can give an accurate example of sense of smell. Tom
I first noticed my tremor in my left hand when i was unable to hold my Kindle steady when reading, I figured it was PD and was DX six months later. Had the tremor for two years now and its slowly got worse over time. Have been on Rasagiline for 18 months which initially worked really well for me but its no longer effective. so it looks like I will have to start taking Madopar three times a day to ease the tremor. Night times are worse for me with tremor in the early hours of the morning.